Well, the tumor board meeting will review her case tonight and they will decide what plan of action to take with her new tumor. I told the oncologist the other day that I would not eat dinner until I heard back from him...so we will see. I am nervous, but very excited to get to the next phase because I know that everything will work itself out.
Kaydence is having the best day ever! She breast fed today and was a pro at it. I was so happy that she latched on the way she was supposed to. It can be a huge challenge for babies to take to the breast after they have gone to a bottle. We practiced for about 20 minutes and then she took 40ccs from her bottle too. That little girl was wide awake for 3 hours, so needless to say I did not put her back in her crib! lol. I was holding her, and loving every minute of it. She is regulating her temperature great, and she has good head control too. This is completely opposite of yesterday, and I can see that all the sleeping paid off!
I layed an outfit out for Paula to put on her last night when I left. They told me that I might not be able to change her anymore because her picc line is in her arm. They said that we could try to change her every few days when they change out her line...so I was content with that. Well Paula came to the rescue and changed her anyway! So she was super cute in her new outfit this morning when I saw her... it was a pleasant surprise.
I knew that it was a good day, so I was going to leave the hospital early evening because she was so stable. My nurse told me that she couldn't wait to hear the results of the tumor board meeting, and she was going to make sure we both found out before her shift ended at 7 p.m. So around that time, Dr. Justin came over and told me what everyone had decided on. He had a huge smile on his face, and told me that yes there is a mass that is 1.5 x 2 but the board does not feel that she needs surgery at this time. They do not think that there should be any concerns for cancer, and they will just monitor the mass with occasional ultrasounds. He also told me that they set a goal for Kaydence to get ready for discharge. All she needs to do is eat all her feeds by mouth, and she will be sent home!
I cannot express how I felt when I was hearing all of it. My breathing was different, my chest cavity felt light as a feather...almost like I was floating. Monday I was slammed in the face with all this horrible news, and now they are telling me that she is a week or two away from coming home! Of course I had so many questions, but I knew that they would explain it more to me during rounds tomorrow morning. He and I laughed and he said that they just wanted to test my patience and mess with me this week. I smiled and said, no...someone is testing my patience, and my patience is paying off. God is taking care of everything, just as we knew he would.
I called Larry and we had a huge celebration about the news. I still want to know why one team was so concerned and the board was not...but I will ask them tomorrow. Tonight, it is great to know that she will be coming home and our normal life will begin together as one! Larry and I miss each other a lot, so I will be going home tomorrow to spend time with Kaylee and him. We will be heading back to Children's Friday night and staying in my apartment until Saturday afternoon. I can't wait to give Kaylee a huge hug and share great conversation over a home cooked meal.
Update:
Most feeds are taken by mouth
Breast feeding is getting better
She has complete control of her temperature
NO SURGERY IS NEEDED
Scheduled to go home in a week or two
Mass will be monitored by ultrasounds
Brain bleed will be monitored by ultrasounds
AFP levels in her blood will be randomly checked
Wednesday, April 30, 2008
Tuesday, April 29, 2008
April 29, 2008
Reminder about the Usborne Book Fundraiser
Website to order: www.ubah.com/HOS112750
FRIDAY- May 2, 2008 is the last day for the Usborne book orders.
25% of the retail sales will go towards Kaydence
Thank you to everyone that has already placed an order!
We really appreciate your support!
_______________________________________________
Kaydence is very sleepy today, and has not wanted to take her milk by bottle much. They took more blood this morning to monitor her AFP levels, and the physicians were able to discuss the results of the cat scan with me during rounds. Great news...there are no signs of any masses in her thoracic area (chest area), and they are pretty certain that she only has the one tumor on her sacrum. They also feel that this tumor is cystic just like her last one. Cystic means fluid filled, and that lessons the chance of cancer cells. It is more common to have cancerous cells around solid tumors, but there is still a chance that hers is cancerous. They will definitely test it once it is removed just to make sure.
They told me last week that she can now wear clothes, so I washed up the ones from gifts and we also bought some more at Target and Wal-Mart. I think I have enough to get us through her preemie stage, and I am excited to see her in them. So my night nurse, Paula, held off on changing her outfit because she knew I wanted to do it this morning. I had butterflies while I was choosing what to put on her, lol!! I just feel like it is one more step closer to being normal, ya know?
Overall, she had one of her bad days...and that is expected with all preemie babies. They had to move her picc line from her left foot to her left arm. That procedure is nothing to smile about, and I had to leave the room because I didn't think I could hear her crying. A picc line is a line that is run through her veins to her heart. Then they have to xray it to make sure it is placed correctly. I was gone for 3 hours in the cafeteria so I wouldn't see it, and they were still adjusting it when I came back. She was exhausted all day long, and this procedure just drained her even more.
Concierge Services snatched me up and took me downstairs to show me a surprise that they put together for me. I just love love love those people, and they were apparently planning something special for me today. They take me into a room and give me a car seat/stroller travel system from Target! I had no idea they were planning to do that, and I just stood there in shock. Amazing, just amazing that people that hardly know my family would want to do special things like that. It definitely brightened my day! They are truly wonderful people that go out of their way to make me smile.
Website to order: www.ubah.com/HOS112750
FRIDAY- May 2, 2008 is the last day for the Usborne book orders.
25% of the retail sales will go towards Kaydence
Thank you to everyone that has already placed an order!
We really appreciate your support!
_______________________________________________
Kaydence is very sleepy today, and has not wanted to take her milk by bottle much. They took more blood this morning to monitor her AFP levels, and the physicians were able to discuss the results of the cat scan with me during rounds. Great news...there are no signs of any masses in her thoracic area (chest area), and they are pretty certain that she only has the one tumor on her sacrum. They also feel that this tumor is cystic just like her last one. Cystic means fluid filled, and that lessons the chance of cancer cells. It is more common to have cancerous cells around solid tumors, but there is still a chance that hers is cancerous. They will definitely test it once it is removed just to make sure.
They told me last week that she can now wear clothes, so I washed up the ones from gifts and we also bought some more at Target and Wal-Mart. I think I have enough to get us through her preemie stage, and I am excited to see her in them. So my night nurse, Paula, held off on changing her outfit because she knew I wanted to do it this morning. I had butterflies while I was choosing what to put on her, lol!! I just feel like it is one more step closer to being normal, ya know?
Overall, she had one of her bad days...and that is expected with all preemie babies. They had to move her picc line from her left foot to her left arm. That procedure is nothing to smile about, and I had to leave the room because I didn't think I could hear her crying. A picc line is a line that is run through her veins to her heart. Then they have to xray it to make sure it is placed correctly. I was gone for 3 hours in the cafeteria so I wouldn't see it, and they were still adjusting it when I came back. She was exhausted all day long, and this procedure just drained her even more.
Concierge Services snatched me up and took me downstairs to show me a surprise that they put together for me. I just love love love those people, and they were apparently planning something special for me today. They take me into a room and give me a car seat/stroller travel system from Target! I had no idea they were planning to do that, and I just stood there in shock. Amazing, just amazing that people that hardly know my family would want to do special things like that. It definitely brightened my day! They are truly wonderful people that go out of their way to make me smile.
I changed one of her dirty diapers today, and yuk...formula fed babies stink!!!! I could smell her from far away, and she never smelled bad with the breast milk. I will be glad when that formula gets out of her system and she starts smelling better...lol. She is back on breast milk until I can't make enough again.
Right before I left for the evening, they did another ultrasound on her brain to see how the brain bleed was. I was talking to the guy that was working on her, and he said that in his opinion, it did not look any worse...but the physicians would look at it in more detail tomorrow.
I found a weight conversion chart today shows converts grams to pounds and ounces...and she weighs 5 pounds 3 ounces already! Wow...I was still thinking that she was under 5 pounds. Now I am worried she won't get the chance to wear all those preemie clothes we got! lol.
April 28, 2008 Cancer?!?!?!?!?!
I drove back to DC this afternoon to stay with the baby for the week. Now, I have been away from her for 5 very long days, and we have been calling to check on her during that time. I wanted to know the results of the MRI, and each nurse told me that they were not notified of the results. While I am driving today, I called and asked the nurse what the physicians said during rounds. I specifically asked her if there was any word on a possible surgery. She said no, and that she too did not know anything about the MRI.
I get to Kaydence's cribside and let her know that I was back. I talked to the nurse and told her that I wanted to talk to a resident about the MRI. My motherly instinct told me something was shady, and I wanted to get down to the bottom of it. I left the room because she told me that someone would be around in 15 or 20 minutes. Next thing I know I see my baby being pushed down the hall to an elevator! My heart was in my throat and I freaked out! I ended up scaring the nurse because I frantically ran up to her asking her where she was going with my baby! She was fumbling over her words and told me she was going down for another MRI. How many freaking MRI's do they need to do, and why!!! She corrected herself and said that my baby needed a cat scan on her thoracic area rather than an MRI. Again.....why?!?!? She told me to go in and talk to the resident.
I was scared out of my mind, because I knew all along that they were keeping something from me. I just knew the MRI showed something bad while I was gone...because the nurses are fully informed of her status, and each one told me that they didn't know. Dr. Justin came over to where I was sitting and had a very long talk with me. The MRI showed that she has another teratoma (tumor) on her posterial sacrum area. It is a little higher up from where her last tumor was, and they don't know if it is a reminant of the last one, or a new one. The reason the MRI from Saturday took 4 hours was because they wanted to scan her entire body for any other tumors that may be growing. Today, they ordered a cat scan of her thoracic area to see if there were any lesians (masses) on her lungs. They now have the oncology department staying close on her case, and they will be discussing her condition with the "tumor board" on Wednesday night to discuss which day they will conduct the surgery and treatments.
---So what does all that mean in our language? Kaydence has another tumor (1.5 x 2 in size) on her butt area. It is a little higher up than the last one, and they are not sure if it is a new one or left over from her last one. Oncology deals with tumors and cancerous masses, and they are concerned that it is cancerous. They wanted to make sure that it has not spread throughout her body and that the possible cancer did not spread yet. Wednesday night, they will set a date and she will have another surgery to remove this tumor. If it is cancerous, she will immediately have chemotherapy treatments.
I listened to Justin as hard as I could without losing my focus. I broke down right at the end and started to cry because all these questions were filling my body up. What about her brain bleed? What about the ASD (hole in her heart), can her heart handle another surgery? What about anesthesia, morphine, possible chance of infection? Cancer!!!! Chemotherapy!!!! Is my baby going to survive? He answered all the questions honestly, and told me that with certain chemotherapy treatments....there are known cases of cardiac arrest. So yea, there is a chance that she will not come home, and that scares me to death.
I didn't want to text Larry and tell him the news. I knew that I would be a mess and that would get him all upset. I texted him and asked him to call and talk to a resident... but he knew that something was wrong. So I did what I could and told him what I knew. He admitted that it is hard to keep his faith when Kaydence keeps getting hit with more battles to fight. He just wants to know when it is going to let up. I wanted him to come to the hospital to be there with me, but I didn't want to ask. Today was his first day back to work in Martinsburg...I don't want him to miss any days. He kept telling me that everything was going to be okay, and that she is going to be fine. I knew that he wasn't sure if she really would be though.
So, let's look at the positive:
She passed her hearing test today
I brought in more breast milk and she is back on it for her feeds
Her bowel movements are still regular
I started my herbal supplements to help with breast milk production
She took a whole bottle (43 cc's) by mouth from me at the 6 p.m. feed
She is very alert when she is awake
She is gaining weight
**I know that she is a gift from God, and I know that he is the provider of life. He chose to give us this miracle child, and he would not give us any more than we can handle. She has touched our hearts and shaped our souls more than we could have ever imagined. All of this is happening for a reason, and we may not ever know why. We have to keep our faith in him, because he has the final decision on where her life is. Her condition may not be what we wanted to sign up for when we wanted to have another baby, but no one signs up for an unhealthy baby. God gave us Kaydence because he knew we would be excellent parents, and he knew we could handle her condition. There are plenty of parents out there that would not be able to cope with the news that they were pregnant with a baby that had a sacrococcygeal teratoma. Those parents would have opted to terminate their pregnancy. God knew that we wouldn't, and we would do anything in our power to make sure that she would have the best life possible. Larry, Kaylee and I are still continuing to do that. Kaylee is so proud to be her sister, and she has never complained that Kaydence has something wrong with her. She has never questioned why God is allowing the baby to go through all of this, so why should we? She loves that baby unconditionally, and talks about her all the time. She knows in her heart that everything will work out and her sister will come home one day. Who are we to shatter that faith when we know that God is amazing.
Please continue to keep Kaydence in your prayers. Share this blog with friends and family so they too can help keep our baby strong in prayer. It's going to be a long road to recovery, but there will be a recovery!
I get to Kaydence's cribside and let her know that I was back. I talked to the nurse and told her that I wanted to talk to a resident about the MRI. My motherly instinct told me something was shady, and I wanted to get down to the bottom of it. I left the room because she told me that someone would be around in 15 or 20 minutes. Next thing I know I see my baby being pushed down the hall to an elevator! My heart was in my throat and I freaked out! I ended up scaring the nurse because I frantically ran up to her asking her where she was going with my baby! She was fumbling over her words and told me she was going down for another MRI. How many freaking MRI's do they need to do, and why!!! She corrected herself and said that my baby needed a cat scan on her thoracic area rather than an MRI. Again.....why?!?!? She told me to go in and talk to the resident.
I was scared out of my mind, because I knew all along that they were keeping something from me. I just knew the MRI showed something bad while I was gone...because the nurses are fully informed of her status, and each one told me that they didn't know. Dr. Justin came over to where I was sitting and had a very long talk with me. The MRI showed that she has another teratoma (tumor) on her posterial sacrum area. It is a little higher up from where her last tumor was, and they don't know if it is a reminant of the last one, or a new one. The reason the MRI from Saturday took 4 hours was because they wanted to scan her entire body for any other tumors that may be growing. Today, they ordered a cat scan of her thoracic area to see if there were any lesians (masses) on her lungs. They now have the oncology department staying close on her case, and they will be discussing her condition with the "tumor board" on Wednesday night to discuss which day they will conduct the surgery and treatments.
---So what does all that mean in our language? Kaydence has another tumor (1.5 x 2 in size) on her butt area. It is a little higher up than the last one, and they are not sure if it is a new one or left over from her last one. Oncology deals with tumors and cancerous masses, and they are concerned that it is cancerous. They wanted to make sure that it has not spread throughout her body and that the possible cancer did not spread yet. Wednesday night, they will set a date and she will have another surgery to remove this tumor. If it is cancerous, she will immediately have chemotherapy treatments.
I listened to Justin as hard as I could without losing my focus. I broke down right at the end and started to cry because all these questions were filling my body up. What about her brain bleed? What about the ASD (hole in her heart), can her heart handle another surgery? What about anesthesia, morphine, possible chance of infection? Cancer!!!! Chemotherapy!!!! Is my baby going to survive? He answered all the questions honestly, and told me that with certain chemotherapy treatments....there are known cases of cardiac arrest. So yea, there is a chance that she will not come home, and that scares me to death.
I didn't want to text Larry and tell him the news. I knew that I would be a mess and that would get him all upset. I texted him and asked him to call and talk to a resident... but he knew that something was wrong. So I did what I could and told him what I knew. He admitted that it is hard to keep his faith when Kaydence keeps getting hit with more battles to fight. He just wants to know when it is going to let up. I wanted him to come to the hospital to be there with me, but I didn't want to ask. Today was his first day back to work in Martinsburg...I don't want him to miss any days. He kept telling me that everything was going to be okay, and that she is going to be fine. I knew that he wasn't sure if she really would be though.
So, let's look at the positive:
She passed her hearing test today
I brought in more breast milk and she is back on it for her feeds
Her bowel movements are still regular
I started my herbal supplements to help with breast milk production
She took a whole bottle (43 cc's) by mouth from me at the 6 p.m. feed
She is very alert when she is awake
She is gaining weight
**I know that she is a gift from God, and I know that he is the provider of life. He chose to give us this miracle child, and he would not give us any more than we can handle. She has touched our hearts and shaped our souls more than we could have ever imagined. All of this is happening for a reason, and we may not ever know why. We have to keep our faith in him, because he has the final decision on where her life is. Her condition may not be what we wanted to sign up for when we wanted to have another baby, but no one signs up for an unhealthy baby. God gave us Kaydence because he knew we would be excellent parents, and he knew we could handle her condition. There are plenty of parents out there that would not be able to cope with the news that they were pregnant with a baby that had a sacrococcygeal teratoma. Those parents would have opted to terminate their pregnancy. God knew that we wouldn't, and we would do anything in our power to make sure that she would have the best life possible. Larry, Kaylee and I are still continuing to do that. Kaylee is so proud to be her sister, and she has never complained that Kaydence has something wrong with her. She has never questioned why God is allowing the baby to go through all of this, so why should we? She loves that baby unconditionally, and talks about her all the time. She knows in her heart that everything will work out and her sister will come home one day. Who are we to shatter that faith when we know that God is amazing.
Please continue to keep Kaydence in your prayers. Share this blog with friends and family so they too can help keep our baby strong in prayer. It's going to be a long road to recovery, but there will be a recovery!
Sunday, April 27, 2008
April 27, 2008 "To Do Lists"
So we got up, went to church, went out to eat for lunch, and started on some of our chore lists. I washed up all the preemie clothes we had to get them ready for the coming weeks, while Larry and Kaylee got ready to meet one of his friends.
Larry was trying to get my piece of junk car ready to run so I could take it to Hagerstown so he could return his grandmother's Hybrid. He jump started it, and drove it around town for a little while to see if it would break down on him. All was looking good exept for the dead inspection sticker, so he was scraping it off to get it ready for a new inspection. Next thing you know Larry came into the house to tell me that the front windshield spiderwebbed while he was taking the sticker off! Now we need a new windshield for my junker! We hate that freaking car, and even my mechanic has said that it is time to get rid of it! It's always something with that thing...and now it won't even come close to passing inspection! lol. So Larry took my car, and I kept the Hybrid to go to the hospital.
After I folded the baby's laundry, I was off to see little miss Ava Grace at Washington County Hospital. Ava was so adorable, and so quiet while she was bundled up in her grandfather's arms. Oh my, she made my heart melt when I saw her, and I was so happy for Mariah and Josh. This is the first grandchild too, so you know she is going to be spoiled! I felt bad for leaving the hospital, and just leaving Mariah's side because I feel like I need to be there for her more than I have been since Kaydence has been born. I know that she has lots of support from her family, but I still want to be there to help out my best friend with motherhood. I got her a gift bag full of stuff for Ava, and everything I thought Mariah would need in the coming weeks. She knows that I will be at her house every weekend helping out in every way I can too.
Larry sold his motorcycle today to a friend of his. We need the money for bills, and when he put it up for sale last year, the idea was to put that money towards a Ford F150 extended cab for him. Now, we could use that money towards all the bills we are behind on. I feel so bad for wanting to put that money on bills, but I know that we will both be able to drive reliable vehicles one of these days. We need a family 4 door car right now more than anything, but I am scared that we will not be able to afford a car payment with a new baby in the family. So I am going to put the money in the bank, and sit on it to see how I should spend it.
We drove the Hybrid out to his grandmothers tonight to give it back. Man, that was hard to hand that car back over to them! I told Larry that I want a reliable vehicle more than ever now that we have driven hers around for a few weeks. I will be taking the Explorer to DC this week because we know it will get me there. Granted it is a gas hog, but we just can't take the chance with my car.
Kaydence had a great day. I tried to get the results of the MRI, but the nurse said that she did not know the details. She said that she would try to get the physician or resident to call me with them, but we never heard from anyone. I don't know if that is a good or bad thing...I am not going to worry until they tell me to though. She is still taking an average of half her feeds by a bottle, and then they put the rest down her feeding tube.
I am driving to DC tomorrow morning for the week. This is the longest I have ever left her, and it has been driving me crazy to not be by her side. Dad picked me up on Wednesday, and it will be 5 days in a row that I did not get to hold her hands! Larry and Kaylee are talking about coming to visit Tuesday or Wednesday night. We didn't get to visit her on our normal Saturday's, so we want to make sure Kaylee gets to spend some time with her each week.
Larry goes back to work at the Martinsburg City Police Department tomorrow morning. It is still hard for him to believe that he doesn't have to go back to the academy this week, and the numbness is still wearing off. He has talked to a few of his classmates on the phone since the graduation...I just hope they keep in contact with each other. He is also glad that many of the cadets from the other class will be sent to Berkeley and Jefferson County when they graduate. I think he said thirteen of them are going to be moving here, and they were really good guys. That's good, Larry will see them from time to time in our home town and not 5 hours away!
I finished my night up with making my "Honey Do" list for Larry. lol...lol. He hasn't seen one of these in months, and I am not so sure he is going to be happy to get this one. I filled the front sheet up with things to get done this week, so we will see how much of it gets accomplished. I figure if I keep him busy, he won't miss me as much....right?!?!?! lol. I did make one for myself too, so it won't look like I put it all on him.
Larry was trying to get my piece of junk car ready to run so I could take it to Hagerstown so he could return his grandmother's Hybrid. He jump started it, and drove it around town for a little while to see if it would break down on him. All was looking good exept for the dead inspection sticker, so he was scraping it off to get it ready for a new inspection. Next thing you know Larry came into the house to tell me that the front windshield spiderwebbed while he was taking the sticker off! Now we need a new windshield for my junker! We hate that freaking car, and even my mechanic has said that it is time to get rid of it! It's always something with that thing...and now it won't even come close to passing inspection! lol. So Larry took my car, and I kept the Hybrid to go to the hospital.
After I folded the baby's laundry, I was off to see little miss Ava Grace at Washington County Hospital. Ava was so adorable, and so quiet while she was bundled up in her grandfather's arms. Oh my, she made my heart melt when I saw her, and I was so happy for Mariah and Josh. This is the first grandchild too, so you know she is going to be spoiled! I felt bad for leaving the hospital, and just leaving Mariah's side because I feel like I need to be there for her more than I have been since Kaydence has been born. I know that she has lots of support from her family, but I still want to be there to help out my best friend with motherhood. I got her a gift bag full of stuff for Ava, and everything I thought Mariah would need in the coming weeks. She knows that I will be at her house every weekend helping out in every way I can too.
Larry sold his motorcycle today to a friend of his. We need the money for bills, and when he put it up for sale last year, the idea was to put that money towards a Ford F150 extended cab for him. Now, we could use that money towards all the bills we are behind on. I feel so bad for wanting to put that money on bills, but I know that we will both be able to drive reliable vehicles one of these days. We need a family 4 door car right now more than anything, but I am scared that we will not be able to afford a car payment with a new baby in the family. So I am going to put the money in the bank, and sit on it to see how I should spend it.
We drove the Hybrid out to his grandmothers tonight to give it back. Man, that was hard to hand that car back over to them! I told Larry that I want a reliable vehicle more than ever now that we have driven hers around for a few weeks. I will be taking the Explorer to DC this week because we know it will get me there. Granted it is a gas hog, but we just can't take the chance with my car.
Kaydence had a great day. I tried to get the results of the MRI, but the nurse said that she did not know the details. She said that she would try to get the physician or resident to call me with them, but we never heard from anyone. I don't know if that is a good or bad thing...I am not going to worry until they tell me to though. She is still taking an average of half her feeds by a bottle, and then they put the rest down her feeding tube.
I am driving to DC tomorrow morning for the week. This is the longest I have ever left her, and it has been driving me crazy to not be by her side. Dad picked me up on Wednesday, and it will be 5 days in a row that I did not get to hold her hands! Larry and Kaylee are talking about coming to visit Tuesday or Wednesday night. We didn't get to visit her on our normal Saturday's, so we want to make sure Kaylee gets to spend some time with her each week.
Larry goes back to work at the Martinsburg City Police Department tomorrow morning. It is still hard for him to believe that he doesn't have to go back to the academy this week, and the numbness is still wearing off. He has talked to a few of his classmates on the phone since the graduation...I just hope they keep in contact with each other. He is also glad that many of the cadets from the other class will be sent to Berkeley and Jefferson County when they graduate. I think he said thirteen of them are going to be moving here, and they were really good guys. That's good, Larry will see them from time to time in our home town and not 5 hours away!
I finished my night up with making my "Honey Do" list for Larry. lol...lol. He hasn't seen one of these in months, and I am not so sure he is going to be happy to get this one. I filled the front sheet up with things to get done this week, so we will see how much of it gets accomplished. I figure if I keep him busy, he won't miss me as much....right?!?!?! lol. I did make one for myself too, so it won't look like I put it all on him.
Saturday, April 26, 2008
April 26, 2008 Another baby is born!
We layed in bed all morning long, and it was great! Kaylee slept in until almost 11 a.m., and she never does that! Once we finally got motivated to be productive, Larry talked me into going to his favorite place to eat, Chili's. I am not a big fan of Chili's at all, and he normally goes there with friends of his and leaves me at home...but I was okay with going this time because it was our little graduation lunch.
We ran into the Greenwalt family at Chili's...they were there to celebrate Donald's birthday. It was good seeing them out, and we chit chatted for a little bit while they were waiting for their seats. Once we were done our meals, the server told us that they had taken care of our bill! That was very sweet, and we were so thankful for their generosity.
Our bellies were stuffed to the max, so we skipped Costco and Wal-Mart and went right back home to be lazy again! We didn't want to be bums, but we couldn't help it...our bodies needed the break. Larry thinks he is catching a cold and I had a bad headache most of the day, so we took a quick nap.
My best friend, Mariah had her baby today! I am so excited to be Aunt Kristen, and I am totally going to steal her baby when I am home on the weekends. As soon as I got the call that she was in labor, I wanted to bolt over to Washington County Hospital. I held back because I wanted her to be able to have family time with her husband and her parents. Ava Grace was 5 pounds 8 ounces, and has beautiful brown hair. I can't wait to see her, but we have to wait until tomorrow for a visit.
Update:
Kaydence needed another MRI today
Her stats are very stable
She is taking formula very well
I'm still pumping...hoping for more breast milk
We ran into the Greenwalt family at Chili's...they were there to celebrate Donald's birthday. It was good seeing them out, and we chit chatted for a little bit while they were waiting for their seats. Once we were done our meals, the server told us that they had taken care of our bill! That was very sweet, and we were so thankful for their generosity.
Our bellies were stuffed to the max, so we skipped Costco and Wal-Mart and went right back home to be lazy again! We didn't want to be bums, but we couldn't help it...our bodies needed the break. Larry thinks he is catching a cold and I had a bad headache most of the day, so we took a quick nap.
My best friend, Mariah had her baby today! I am so excited to be Aunt Kristen, and I am totally going to steal her baby when I am home on the weekends. As soon as I got the call that she was in labor, I wanted to bolt over to Washington County Hospital. I held back because I wanted her to be able to have family time with her husband and her parents. Ava Grace was 5 pounds 8 ounces, and has beautiful brown hair. I can't wait to see her, but we have to wait until tomorrow for a visit.
Update:
Kaydence needed another MRI today
Her stats are very stable
She is taking formula very well
I'm still pumping...hoping for more breast milk
Friday, April 25, 2008
April 25, 2008 GRADUATION DAY!
I had the best sleep of my life last night! Wow, I need to find out what kind of mattress and pillow's the Microtel uses, because I want one of each! The pillows were amazing, and the bed...oh, it was wonderful! It was the best hotel experience we have ever had!
We met up with Larry's family, and all of us drove over to the West Virginia State University campus for the first part of graduation. My heart was racing a mile a minute, and I kept going to the bathroom to grab paper towels so I would have "tissues". His dad couldn't understand why I was so nervous, but I was nervous for Larry! I was, because I knew he was, and I wanted him to have the best graduation ever. Kaylee was so pretty in her little dress, and you could see the excitement all over her face. When the 133rd basic class marched into the room, my heart started to pound in my throat. This was it, the day was finally here that I could put this part of our lives in the history books. I wanted to savor every moment, but there was so much to absorb!
Larry was nominated to be the class speaker, and he was introduced before he gave his speech. That was such a proud moment to hear someone introduce my husband to a group of individuals that have waited for this day just as much as I have. Larry's speech was happy, sad, and everything in between. Yea, of course I cried...it was one of the most exhilarating moments I have had. This was one of the most important days of his life, and we were able to share it together, with Kaylee, and with our family.
After we were done at the campus, everyone was invited to see the class give their final march at the academy. This was definitely Kaylee's favorite part, and she marched just like her daddy did for the rest of the day, lol. I had the opportunity to meet so many of his classmates, their wives, and almost all of his class supervisors. Kaydence was the topic of conversation, and many tears were shared with lots and lots of hugs. A few people blessed us with gifts and cards to help us out with things we needed for the baby. It was so hard not to just walk around and cry from being so happy, but I stood as strong as I could. Our baby has touched so many people, and it is hard to comprehend sometimes! People were meeting me, and they would just immediately choke up! I felt so much love today from so many "strangers". Walking away, I knew they weren't strangers afterall...they are our extended family that God has given us. We are in their lives every day, every night, and in every prayer. How do you say thank you? Are there even words to extend our gratitude?
Pulling out of Academy Drive was a bitter sweet ending for us. We were so happy to know that he would never leave for that long ever again, but he would also never be with all of them as a team again. The closer we got to Martinsburg, the more it started to hit him. He is really going to miss everyone. They were just starting to bond, they were so united as a team...and then each person went their separate ways.
We called to check up on the baby throughout the day. She had an MRI today because her AFP levels were still too high. They told us later this evening that they have to do another MRI because she moved around too much. That one is scheduled for tomorrow morning, and they will need to sedate her to ensure accurate results.
We met up with Larry's family, and all of us drove over to the West Virginia State University campus for the first part of graduation. My heart was racing a mile a minute, and I kept going to the bathroom to grab paper towels so I would have "tissues". His dad couldn't understand why I was so nervous, but I was nervous for Larry! I was, because I knew he was, and I wanted him to have the best graduation ever. Kaylee was so pretty in her little dress, and you could see the excitement all over her face. When the 133rd basic class marched into the room, my heart started to pound in my throat. This was it, the day was finally here that I could put this part of our lives in the history books. I wanted to savor every moment, but there was so much to absorb!
Larry was nominated to be the class speaker, and he was introduced before he gave his speech. That was such a proud moment to hear someone introduce my husband to a group of individuals that have waited for this day just as much as I have. Larry's speech was happy, sad, and everything in between. Yea, of course I cried...it was one of the most exhilarating moments I have had. This was one of the most important days of his life, and we were able to share it together, with Kaylee, and with our family.
After we were done at the campus, everyone was invited to see the class give their final march at the academy. This was definitely Kaylee's favorite part, and she marched just like her daddy did for the rest of the day, lol. I had the opportunity to meet so many of his classmates, their wives, and almost all of his class supervisors. Kaydence was the topic of conversation, and many tears were shared with lots and lots of hugs. A few people blessed us with gifts and cards to help us out with things we needed for the baby. It was so hard not to just walk around and cry from being so happy, but I stood as strong as I could. Our baby has touched so many people, and it is hard to comprehend sometimes! People were meeting me, and they would just immediately choke up! I felt so much love today from so many "strangers". Walking away, I knew they weren't strangers afterall...they are our extended family that God has given us. We are in their lives every day, every night, and in every prayer. How do you say thank you? Are there even words to extend our gratitude?
Pulling out of Academy Drive was a bitter sweet ending for us. We were so happy to know that he would never leave for that long ever again, but he would also never be with all of them as a team again. The closer we got to Martinsburg, the more it started to hit him. He is really going to miss everyone. They were just starting to bond, they were so united as a team...and then each person went their separate ways.
We called to check up on the baby throughout the day. She had an MRI today because her AFP levels were still too high. They told us later this evening that they have to do another MRI because she moved around too much. That one is scheduled for tomorrow morning, and they will need to sedate her to ensure accurate results.
April 24, 2008 One day 'til graduation
Oh my gosh, today flew by so fast because I had a million and one things to get done before we left for Charleston to see Larry graduate from the WV State Police Academy! I had our cousin Keisha with me and we did everything we could to find a dress for Kaylee and me so we would look nice for him. I tell you, that was a very very very stressful time for me! I almost had a few panic attacks in the stores because it didn't matter what I tried on, it would not fit! I am only about 5-10 pounds away from being at my pre-pregnancy weight, but even though the weight is close....THE BODY IS NOT THE SAME! So I wanted to get at least one pair of jeans to wear at the hospital, but I could not find anything to fit. We did find dresses for graduation, so mission accomplished!
While I was in Kohl's, I get a phone call from one of the residents at Children's. He told me that her AFP blood results came in, and this second test also came back high so they need to do an MRI. The MRI is scheduled for tomorrow morning at 10 a.m. and they are going to look for signs that the teratoma has either grown back, or a small part of the previous one might be still there. I hated hearing those words, knowing that I would not be at the hospital to support her...but I know that she is in good hands. Once the graduation is over, both of us will be close enough to drive there for things like that. The nurse also told me that she took a full feed by bottle today for the first time! Yep, I wasn't there for that one either! The news is still outstanding to hear, I just wish I could have given her that bottle, ya know!
So, my dad drove us to Charleston, and Larry's grandmother was kind enough to let us use her Hybrid vehicle to save us tons on gas! We keep trying to talk her into giving us the car, but that hasn't happened yet...lol!!! So we hit the road around 2:30 p.m. and headed for the Microtel in South Charleston. The drive was long, but so mountains were so beautiful. I was proud of myself, I did not sleep at all. Larry always gets mad because I always fall asleep on long drives, but not this one. I was so excited to see him graduate, and my nerves kept me awake.
One more day until graduation! Can't wait!
While I was in Kohl's, I get a phone call from one of the residents at Children's. He told me that her AFP blood results came in, and this second test also came back high so they need to do an MRI. The MRI is scheduled for tomorrow morning at 10 a.m. and they are going to look for signs that the teratoma has either grown back, or a small part of the previous one might be still there. I hated hearing those words, knowing that I would not be at the hospital to support her...but I know that she is in good hands. Once the graduation is over, both of us will be close enough to drive there for things like that. The nurse also told me that she took a full feed by bottle today for the first time! Yep, I wasn't there for that one either! The news is still outstanding to hear, I just wish I could have given her that bottle, ya know!
So, my dad drove us to Charleston, and Larry's grandmother was kind enough to let us use her Hybrid vehicle to save us tons on gas! We keep trying to talk her into giving us the car, but that hasn't happened yet...lol!!! So we hit the road around 2:30 p.m. and headed for the Microtel in South Charleston. The drive was long, but so mountains were so beautiful. I was proud of myself, I did not sleep at all. Larry always gets mad because I always fall asleep on long drives, but not this one. I was so excited to see him graduate, and my nerves kept me awake.
One more day until graduation! Can't wait!
Tuesday, April 22, 2008
April 23, 2008
So after reading your comments, I am going to fill the Reglan but hold off until next week to decide on starting it. I will go out and get some more vitamins other than my multi-vitamin and search for the Mother's Milk Tea and try it. Even if the tea tastes horrible, I can eat lots of cookies to kill the taste!!
It is going to be difficult to pump Thursday and Friday because I will be in Charleston for Larry's graduation...so milk storage should be interesting. lol. If I don't have a fridge in the hotel room, I am going to have a freaking cooler with ice in my dad's trunk! I can't afford to pump and dump because Kaydence needs every drop right now. My pump even has a car adapter plug in, so I am sure my dad is going to love that during our long drive down to Charleston. Hey, when ya gotta pump, ya gotta pump! Maybe I will sit in the back the whole way there and let him be my limo driver!
Dad came up and saw the baby today and took me home so we could get ready to leave for Charleston. He even got to hold her and feed her this afternoon. It was a very special time for the both of us, and she was so cute in his arms. This was the first time they got the chance to meet because he was keeping Kaylee for us when she was born a few weeks ago.
We went home, and I tried to get some stuff done around the house before we left for Charleston on Thursday.
It is going to be difficult to pump Thursday and Friday because I will be in Charleston for Larry's graduation...so milk storage should be interesting. lol. If I don't have a fridge in the hotel room, I am going to have a freaking cooler with ice in my dad's trunk! I can't afford to pump and dump because Kaydence needs every drop right now. My pump even has a car adapter plug in, so I am sure my dad is going to love that during our long drive down to Charleston. Hey, when ya gotta pump, ya gotta pump! Maybe I will sit in the back the whole way there and let him be my limo driver!
Dad came up and saw the baby today and took me home so we could get ready to leave for Charleston. He even got to hold her and feed her this afternoon. It was a very special time for the both of us, and she was so cute in his arms. This was the first time they got the chance to meet because he was keeping Kaylee for us when she was born a few weeks ago.
We went home, and I tried to get some stuff done around the house before we left for Charleston on Thursday.
April 22, 2008 Almost out of milk
So my little nap from last night turned into 13 hours of sleep! I didn't wake up until early this morning. I never even got up to pump, so that was one of the first things I did to relieve some pressure.
I listened real hard and took notes this morning when they did rounds on the baby. I wanted to hear something about the blood test and I also wanted to get an update on her brain ultrasound. The brain ultrasound wasn't done until after I left yesterday, so I never got to hear if her brain is getting better or not. Her brain bleed is getting a little worse, her ventricles looked more expanded, but they are not categorizing it to a grade 3 yet...it is still a grade 2. Then they started talking about her AFP being high and that they requested another test to be run. I let them finish everything and then I asked for answers. They came clean and told me that her blood came back from last week saying that she was anemic and that she has abnormal tissue. Anemia is common in preemies, but the tissue is not. The AFP will help detect if there is going to be some kind of abnormal growth, and they think that her SCT might be trying to grow back. Some tests can be wrong, and before they go sending her into exploratory surgery, they wanted another blood test done. The blood tests are sent off and takes about a week for them to come back. If this next one comes back high, then they don't know what they are going to do next. They were very honest with me that they don't know why her SCT would grow back if her coccygeal bone was removed. They assured me that her coccygeal bone was removed during her surgery, so my understanding of all the research I did during the pregnancy is that it can't grow back. Also, her SCT was cystic and did not have any mass in it other than fluid...so what does this "tissue" have anything to do with a new SCT. When you look at her butt right now, it is perfect and it is not swelling or even appear that something may be trying to form. So I think that all of us are very confused at this point, and we are all hoping that the first test was wrong. I am nervous about it because I do not want her to go into surgery again, but all of this is in God's hands and he will make sure she is safe.
After rounds, my social worker came up to me to talk. I have not talked to her in over a week, and when she approached me when I was crying on Friday morning with Paula, I told her I was fine in a very blunt way. She knew in the tone of my voice that I wanted her to leave me alone. So when she came up to me this morning, I could tell she was a little leary of what to say. We had a nice, calm discussion and I came clean and told her that I was very disappointed in the way she has handled our case. I told her how I felt about everything, including what she told Consierge Services about me staying in their apartments. In the end, I told her that I would like to start off with a clean slate with her, and put everything behind us. She apologized and admitted that she conflicts with Consierge Services, and realized that it has affected her cases (like mine) in a negative way. On a great note, she did tell us about some things that may help us pay or some...if not all of her medical bills. It is a waiting game, but I have all the time in the world if there are grants out there to help. Trust me, Larry and I got the bill for the helicopter transport....and WOW, we will be paying $5 a month for the rest of her life just on that one! lol.
So Kaydence did great without her nasal cannula, and they don't think she will need it again. Her saturation is perfect, and she maintained her stats all day long yesterday. She has also been moved back into an open crib and she is now responsible for regulating her temperature. I came in this morning to see the new crib, and they even had a little sleeper outfit on her. Everything they have is huge on her, and the nurse asked me if I brought outfits for her. Uh, I don't have any preemie outfits! I know that I have maybe 3 or 4 from what people have given me, so I will have to bring those in when I come back for next week. That's exciting that I can put clothes on her everyday.
Overall, she really struggled today compared to how she has been doing. I personally think that they put her in an open crib too soon, because she could not maintain her temp today at all. While I was at lunch, she got real cold and vomited all over herself. The nurse said that they can have an upset stomach when they are burning calories to try to keep their temp up and being unsuccessful at it. They pulled up a warmer and put that over her crib to help her out...but I would like her to go back into her isolette for another week. I told the night nurse that I would not be upset if she moved her back into the isolette after I left, hoping she got the hint.
I knew it was going to happen, but I did not think it would happen so soon...but they have informed me that they are almost out of the frozen breast milk. I just can't produce enough, no matter what I try. I called my OBGYN and they called in a prescription for Reglan, and it is supposed to help me produce more milk. I will pick up the medication tomorrow night when I get back into Martinsburg. I'm bummed because I doubt what I brought in from the apartment will last her until Saturday when we come back.
The physicians said that they would like me to try to breastfeed twice a day, so that is just what I did today. This morning, she didn't want a thing to do with it. She would not do anything, and the nurse was working really hard and trying to get her to latch on. This afternoon, she woke up around 5:15 p.m. and she was rooting and sucking on anything she could get in her mouth. She wasn't supposed to feed until 6, but Jackie let me try to nurse her. That little baby sucked for 40-45 minutes like she was a pro. She was wide awake, and did everything perfectly. I felt bad for her because I can only pump 1/2 of what her full feed is right now, so I know she was still hungry. The breastfeeding time was nice though...she was so cute and she wanted to hold both of my hands the whole time. It was hard because I had my hands full...but I made sure I had an extra finger to give her from each side.
So I was at the hospital from 9 a.m. to 10 p.m., and I have concluded that I really don't like to depend on other people. I was so ready to go back to the apartment at 7:30, but I have to wait until they are ready. With as exhausted as I am now, I don't want to be waiting on anyone. I can't be mad because then I would be ungrateful, but I just feel like I need to have control over something when it comes to being here...and being able to leave on my terms sounds like a good start. I think next week I will be driving myself around DC...as scary as that sounds! lol
Goodnight everyone! I'm hitting the shower and going to bed.
I listened real hard and took notes this morning when they did rounds on the baby. I wanted to hear something about the blood test and I also wanted to get an update on her brain ultrasound. The brain ultrasound wasn't done until after I left yesterday, so I never got to hear if her brain is getting better or not. Her brain bleed is getting a little worse, her ventricles looked more expanded, but they are not categorizing it to a grade 3 yet...it is still a grade 2. Then they started talking about her AFP being high and that they requested another test to be run. I let them finish everything and then I asked for answers. They came clean and told me that her blood came back from last week saying that she was anemic and that she has abnormal tissue. Anemia is common in preemies, but the tissue is not. The AFP will help detect if there is going to be some kind of abnormal growth, and they think that her SCT might be trying to grow back. Some tests can be wrong, and before they go sending her into exploratory surgery, they wanted another blood test done. The blood tests are sent off and takes about a week for them to come back. If this next one comes back high, then they don't know what they are going to do next. They were very honest with me that they don't know why her SCT would grow back if her coccygeal bone was removed. They assured me that her coccygeal bone was removed during her surgery, so my understanding of all the research I did during the pregnancy is that it can't grow back. Also, her SCT was cystic and did not have any mass in it other than fluid...so what does this "tissue" have anything to do with a new SCT. When you look at her butt right now, it is perfect and it is not swelling or even appear that something may be trying to form. So I think that all of us are very confused at this point, and we are all hoping that the first test was wrong. I am nervous about it because I do not want her to go into surgery again, but all of this is in God's hands and he will make sure she is safe.
After rounds, my social worker came up to me to talk. I have not talked to her in over a week, and when she approached me when I was crying on Friday morning with Paula, I told her I was fine in a very blunt way. She knew in the tone of my voice that I wanted her to leave me alone. So when she came up to me this morning, I could tell she was a little leary of what to say. We had a nice, calm discussion and I came clean and told her that I was very disappointed in the way she has handled our case. I told her how I felt about everything, including what she told Consierge Services about me staying in their apartments. In the end, I told her that I would like to start off with a clean slate with her, and put everything behind us. She apologized and admitted that she conflicts with Consierge Services, and realized that it has affected her cases (like mine) in a negative way. On a great note, she did tell us about some things that may help us pay or some...if not all of her medical bills. It is a waiting game, but I have all the time in the world if there are grants out there to help. Trust me, Larry and I got the bill for the helicopter transport....and WOW, we will be paying $5 a month for the rest of her life just on that one! lol.
So Kaydence did great without her nasal cannula, and they don't think she will need it again. Her saturation is perfect, and she maintained her stats all day long yesterday. She has also been moved back into an open crib and she is now responsible for regulating her temperature. I came in this morning to see the new crib, and they even had a little sleeper outfit on her. Everything they have is huge on her, and the nurse asked me if I brought outfits for her. Uh, I don't have any preemie outfits! I know that I have maybe 3 or 4 from what people have given me, so I will have to bring those in when I come back for next week. That's exciting that I can put clothes on her everyday.
Overall, she really struggled today compared to how she has been doing. I personally think that they put her in an open crib too soon, because she could not maintain her temp today at all. While I was at lunch, she got real cold and vomited all over herself. The nurse said that they can have an upset stomach when they are burning calories to try to keep their temp up and being unsuccessful at it. They pulled up a warmer and put that over her crib to help her out...but I would like her to go back into her isolette for another week. I told the night nurse that I would not be upset if she moved her back into the isolette after I left, hoping she got the hint.
I knew it was going to happen, but I did not think it would happen so soon...but they have informed me that they are almost out of the frozen breast milk. I just can't produce enough, no matter what I try. I called my OBGYN and they called in a prescription for Reglan, and it is supposed to help me produce more milk. I will pick up the medication tomorrow night when I get back into Martinsburg. I'm bummed because I doubt what I brought in from the apartment will last her until Saturday when we come back.
The physicians said that they would like me to try to breastfeed twice a day, so that is just what I did today. This morning, she didn't want a thing to do with it. She would not do anything, and the nurse was working really hard and trying to get her to latch on. This afternoon, she woke up around 5:15 p.m. and she was rooting and sucking on anything she could get in her mouth. She wasn't supposed to feed until 6, but Jackie let me try to nurse her. That little baby sucked for 40-45 minutes like she was a pro. She was wide awake, and did everything perfectly. I felt bad for her because I can only pump 1/2 of what her full feed is right now, so I know she was still hungry. The breastfeeding time was nice though...she was so cute and she wanted to hold both of my hands the whole time. It was hard because I had my hands full...but I made sure I had an extra finger to give her from each side.
So I was at the hospital from 9 a.m. to 10 p.m., and I have concluded that I really don't like to depend on other people. I was so ready to go back to the apartment at 7:30, but I have to wait until they are ready. With as exhausted as I am now, I don't want to be waiting on anyone. I can't be mad because then I would be ungrateful, but I just feel like I need to have control over something when it comes to being here...and being able to leave on my terms sounds like a good start. I think next week I will be driving myself around DC...as scary as that sounds! lol
Goodnight everyone! I'm hitting the shower and going to bed.
April 21, 2008 Blood Tests
I sleep the best when it rains outside, so I REALLY wanted to sleep in this morning. Doug Fortney had to go to work, and he is my ride...so I was up at the crack of dawn to go to the hospital. I have definitely hit a wall, and my body is exhausted.
Allison was our nurse today, and we really like her. She is so freaking smart, and she is all about the NICU being a family care center. She, along with every other nurse, had heard about what Terry did last week...and assured me that Terry was very inaccurate in what she said to me. Tara, the nurse manager, tracked me down and we had a long meeting in her office about the episode. I told her that I wanted to take positive things from Terry...and I expressed my ideas that I thought would be beneficial if they implemented them in the NICU. She liked my ideas, and asked me to be a part of a parent group that meets once a month with 20 faculty members. I would not be able to be part of the group until Kaydence has been discharged and out of the NICU for at least 6 months. She commended me for my patience and my will to stay strong with Terry. Tara admitted that she would have knocked her out if it had been her. So that made me feel very proud of myself for not losing my cool. :)
I told Allison about my ideas that I told Tara about, and after lunch she told me that she wanted to help me out and create it for me. She went to one of her superiors and she said that we could get it approved faster than waiting for the parent board meeting to do it. I am so excited that we could get things rolling! The hospital has a "bear" theme in a lot of things they refer to. Allison and I are creating a care sheet called "Momma & Papa Bear Care" and it will be posted by each baby in the NICU. This is a sheet that the parents can give their input on what they would like done with their baby. Most parents cannot be with their babies, and may just want the nurses to tell their baby that they love them and miss them. Other parents, like myself, are there every day and know what their babies like. For example, Kaydence likes to lay on her left side, and likes her dog on her head when she is cranky. I might not be there for every shift to make sure each and every nurse knows that. During shift change, these little things are not passed on to the next nurse. They are worried about what medical test has been or needs to be done, blood work, ultrasounds, ventilation, etc. This extra care sheet will help ease the parents, and help their babies heal faster. Allison wanted to add a progress sheet on the bottom of it for the parents to refer to. It is a gestation chart, and shows what goals you should have for your baby depending on their age. This chart will help them with their decisions on what they might want to request. Cool, huh?
I was thrown off guard today when a person came to her isolette to take blood. She asked my nurse if I needed to leave, and I said that I was not leaving...and I wanted to know why she was taking her blood. In very medical terms, she was telling me what they were testing for. I kept asking her what she meant, and she would give me more medical terminology. She kept saying that she was testing her AFP. Well, her AFP was checked back in January when we had to get an amnio done...so why are they testing it now. I also saw in her charts last week that she had an AFP test done, and no one told me that her blood was taken then. So the lady took her blood, and I still don't have a clue why. I am going to ask the physicians during rounds in the morning. I feel like they are hiding something, and I have a bad feeling about it.
I spoke with two Lactation Specialists today because I feel like I am still making an inadequate amount of milk. Both think that I am just way too tired and stressed to produce more. One of them mentioned that I may need a prescription of a certain med that will help me produce more. Another one told me about an herbal tea called Mother's Milk Tea that could also help. I am not giving up on breastfeeding yet. I really want to make it work not only for my baby, but for financial reasons as well. It is nutritiously better for her, the bond is very special, and it will save us hundreds on formula....I will make this work!! The specialists were shocked that the physicians weren't letting me try to breastfeed yet...so they spoke to them to see why. After explaining to the doctors that she would not be getting a whole lot from me, but needed the practice of latching on and sucking, they allowed me to try. So Kaydence and I tried for 30 minutes and at first she was clueless. She is very stubborn (LIKE ME) and was totally against having to work for her feeds. Once everyone gave us some alone time, she relaxed and finally latched on. She has realized now that if she sucks, she gets milk...but it was not consistent. Even still, she learned a lot from trying...and practice makes perfect.
Early afternoon, I was starting to get really tired and fall asleep at her crib side. Chris Fortney was not feeling well, and wanted to get some things done back at the apartment, so she was taking a taxi home. I told her that I would go back with her. I need a nap in the worst way.
Update:
She is now on room air with no nasal cannula
Plenty of dirty diapers, and they have no concerns with her movements now
They took blood to test her AFP levels (whatever that means)
She tried to breastfeed
They are weaning her from the isolette
Started to give her a multi-vitamin once daily
Allison was our nurse today, and we really like her. She is so freaking smart, and she is all about the NICU being a family care center. She, along with every other nurse, had heard about what Terry did last week...and assured me that Terry was very inaccurate in what she said to me. Tara, the nurse manager, tracked me down and we had a long meeting in her office about the episode. I told her that I wanted to take positive things from Terry...and I expressed my ideas that I thought would be beneficial if they implemented them in the NICU. She liked my ideas, and asked me to be a part of a parent group that meets once a month with 20 faculty members. I would not be able to be part of the group until Kaydence has been discharged and out of the NICU for at least 6 months. She commended me for my patience and my will to stay strong with Terry. Tara admitted that she would have knocked her out if it had been her. So that made me feel very proud of myself for not losing my cool. :)
I told Allison about my ideas that I told Tara about, and after lunch she told me that she wanted to help me out and create it for me. She went to one of her superiors and she said that we could get it approved faster than waiting for the parent board meeting to do it. I am so excited that we could get things rolling! The hospital has a "bear" theme in a lot of things they refer to. Allison and I are creating a care sheet called "Momma & Papa Bear Care" and it will be posted by each baby in the NICU. This is a sheet that the parents can give their input on what they would like done with their baby. Most parents cannot be with their babies, and may just want the nurses to tell their baby that they love them and miss them. Other parents, like myself, are there every day and know what their babies like. For example, Kaydence likes to lay on her left side, and likes her dog on her head when she is cranky. I might not be there for every shift to make sure each and every nurse knows that. During shift change, these little things are not passed on to the next nurse. They are worried about what medical test has been or needs to be done, blood work, ultrasounds, ventilation, etc. This extra care sheet will help ease the parents, and help their babies heal faster. Allison wanted to add a progress sheet on the bottom of it for the parents to refer to. It is a gestation chart, and shows what goals you should have for your baby depending on their age. This chart will help them with their decisions on what they might want to request. Cool, huh?
I was thrown off guard today when a person came to her isolette to take blood. She asked my nurse if I needed to leave, and I said that I was not leaving...and I wanted to know why she was taking her blood. In very medical terms, she was telling me what they were testing for. I kept asking her what she meant, and she would give me more medical terminology. She kept saying that she was testing her AFP. Well, her AFP was checked back in January when we had to get an amnio done...so why are they testing it now. I also saw in her charts last week that she had an AFP test done, and no one told me that her blood was taken then. So the lady took her blood, and I still don't have a clue why. I am going to ask the physicians during rounds in the morning. I feel like they are hiding something, and I have a bad feeling about it.
I spoke with two Lactation Specialists today because I feel like I am still making an inadequate amount of milk. Both think that I am just way too tired and stressed to produce more. One of them mentioned that I may need a prescription of a certain med that will help me produce more. Another one told me about an herbal tea called Mother's Milk Tea that could also help. I am not giving up on breastfeeding yet. I really want to make it work not only for my baby, but for financial reasons as well. It is nutritiously better for her, the bond is very special, and it will save us hundreds on formula....I will make this work!! The specialists were shocked that the physicians weren't letting me try to breastfeed yet...so they spoke to them to see why. After explaining to the doctors that she would not be getting a whole lot from me, but needed the practice of latching on and sucking, they allowed me to try. So Kaydence and I tried for 30 minutes and at first she was clueless. She is very stubborn (LIKE ME) and was totally against having to work for her feeds. Once everyone gave us some alone time, she relaxed and finally latched on. She has realized now that if she sucks, she gets milk...but it was not consistent. Even still, she learned a lot from trying...and practice makes perfect.
Early afternoon, I was starting to get really tired and fall asleep at her crib side. Chris Fortney was not feeling well, and wanted to get some things done back at the apartment, so she was taking a taxi home. I told her that I would go back with her. I need a nap in the worst way.
Update:
She is now on room air with no nasal cannula
Plenty of dirty diapers, and they have no concerns with her movements now
They took blood to test her AFP levels (whatever that means)
She tried to breastfeed
They are weaning her from the isolette
Started to give her a multi-vitamin once daily
Sunday, April 20, 2008
April 20, 2008
Today flew by because we were trying to get a bunch of stuff done before both of us had to hit the road. I woke up real early to finish up some laundry, and then we went to the early service at church. We went and had lunch, and then drove home to pack all of us up. Kaylee cleaned the litter box, Larry cleaned the rat tanks, and I packed up Kaylee's bag for the week.
Larry dropped me off at The Living Room to meet up with Kristie and Brenda for our chick road trip to Children's. I knew it was the last time I would tell him to drive safe before he left for the police academy. That makes me smile! Back in January it seemed like the academy would never end, and now it is finally here! A little after he and Kaylee left, we hit the road...and it was a nasty drive. The rain was horrible, and the traffic was a little heavy at times. We enjoyed chit-chatting about girl stuff, and I thought the drive was cut in half because we were talking so much. lol
Once we got to the hospital, both of them got the chance to hold her. She wouldn't open her eyes for them, but peeked a little when we were feeding her. I've noticed the past two days she has been very calm when I do her daily cares...normally she cries her head off when we change her diaper and stuff. She was very content and enjoyed the cuddle time she got from Kristie and Brenda.
The night nurse came on, and I really liked the way she talked to the babies in our bay. You could tell she really likes her job, and she was very happy to meet me. I was helping her out with "bath night" and Kaydence started rooting around with her mouth. The nurse told me to let her nurse on me. I had never done that before because other nurses said that it was not allowed because everything needs to be measured. She was very cool about it and said that it is just to help the bond form, and the most she would get from me is one or two cc's of milk. Most of the time, babies will dribble that amount during feeds anyway. So I tried it out and she latched right on...the nurse got all choked up and almost started crying. I told her not to cry because it would get me started. She didn't suck a whole lot, but she knew what to do...and she was wide awake during the whole thing. Now that is what I am talking about...I would rather bong with her instead of my pumps any day!!!
It is thundering real bad tonight, and I wish I wish I wish I could sleep in tomorrow morning...but my ride is heading to the hospital at 8:15 a.m. :( But I want to be there for rounds so I can talk to the doctors about what happens when she reaches her full feed. So I will sleep some other time...like, you know...whenever she is discharged.
Update:
She is having yellow stool now (from the breast milk)
Her feeds were 33 cc's tonight
Her full feed goal is 40 cc's. She should meet her goal in about 2 days.
She weighs 4 pounds 7 ounces
Larry dropped me off at The Living Room to meet up with Kristie and Brenda for our chick road trip to Children's. I knew it was the last time I would tell him to drive safe before he left for the police academy. That makes me smile! Back in January it seemed like the academy would never end, and now it is finally here! A little after he and Kaylee left, we hit the road...and it was a nasty drive. The rain was horrible, and the traffic was a little heavy at times. We enjoyed chit-chatting about girl stuff, and I thought the drive was cut in half because we were talking so much. lol
Once we got to the hospital, both of them got the chance to hold her. She wouldn't open her eyes for them, but peeked a little when we were feeding her. I've noticed the past two days she has been very calm when I do her daily cares...normally she cries her head off when we change her diaper and stuff. She was very content and enjoyed the cuddle time she got from Kristie and Brenda.
The night nurse came on, and I really liked the way she talked to the babies in our bay. You could tell she really likes her job, and she was very happy to meet me. I was helping her out with "bath night" and Kaydence started rooting around with her mouth. The nurse told me to let her nurse on me. I had never done that before because other nurses said that it was not allowed because everything needs to be measured. She was very cool about it and said that it is just to help the bond form, and the most she would get from me is one or two cc's of milk. Most of the time, babies will dribble that amount during feeds anyway. So I tried it out and she latched right on...the nurse got all choked up and almost started crying. I told her not to cry because it would get me started. She didn't suck a whole lot, but she knew what to do...and she was wide awake during the whole thing. Now that is what I am talking about...I would rather bong with her instead of my pumps any day!!!
It is thundering real bad tonight, and I wish I wish I wish I could sleep in tomorrow morning...but my ride is heading to the hospital at 8:15 a.m. :( But I want to be there for rounds so I can talk to the doctors about what happens when she reaches her full feed. So I will sleep some other time...like, you know...whenever she is discharged.
Update:
She is having yellow stool now (from the breast milk)
Her feeds were 33 cc's tonight
Her full feed goal is 40 cc's. She should meet her goal in about 2 days.
She weighs 4 pounds 7 ounces
Saturday, April 19, 2008
April 19, 2008 Kaylee held her sister
All of us got ready and made the drive to the hospital this morning to see Kaydence. Kaylee was so excited because I told her that if her sister was stable today, we would see if she could hold her. Kaylee has been waiting to hold her ever since I told her we were going to have a baby. She has been very patient, and I was glad to finally give her the chance to get her wish.
We spent time with her until her 3 p.m. daily cares were due. Larry and Kaylee declined the offer to change her diaper, so I stepped up to the plate. She has a dirty diaper just about every time I change her now, so that is really good to know that everything down there is working and moving well. Kaylee took her temperature, and I finished up with measuring her belly. Then it was time to hold her before she got fed.
Kaylee was so excited, and was focusing on doing everything perfectly. We packed blankets under her arm so she could prop her up without her arms getting tired, and we bundled the baby up in her blanket and hat. Kaydence relaxed with her eyes closedin her big sister's arms. She kept smiling, and Kaylee would make sure we knew her sister was smiling at her. I told Kaylee that she was probably just passing gas on her, and she said that she was and that she could feel it on her arms. It was really funny!
Kaydence was up to 25cc's of breast milk today! Wow, that was great news to hear that she is handling her feeds like a champ! Right before every feed, they pull out the remaining milk in her stomach from her feeding tube to see how much of it is left. Then they push it back in using the syringe, and begin her next feed. She is right where she should be each time they check, and she is digesting everything perfectly.
Before we left, one of the other nurses that was being trained by Paula the other day came up to talk to me. She wanted to make sure that I was okay, and said that she got worried this morning when I wasn't in the hospital bright and early. Once I left the other night when Terry insulted me, Penny (this nurse) said she went up to her and told her how wrong she was. Penny said that Terry had a tendency to do that to other parents, but had never seen it that bad. That made me feel better to know that I was not the only one...but I would really like to be the last parent that has to feel that way from her.
We left the hospital and treated ourselves to Outback...my favorite place to eat!! We had a very cheerful server named Crystal, and everything was amazing. We enjoyed talking with Kaylee about her week at school, and playing games in her kids coloring book. It was a great meal, and just a nice way to relax and enjoy my family time with the two of them. Having a good server can really make the difference, and we will request her every time we go back.
We spent time with her until her 3 p.m. daily cares were due. Larry and Kaylee declined the offer to change her diaper, so I stepped up to the plate. She has a dirty diaper just about every time I change her now, so that is really good to know that everything down there is working and moving well. Kaylee took her temperature, and I finished up with measuring her belly. Then it was time to hold her before she got fed.
Kaylee was so excited, and was focusing on doing everything perfectly. We packed blankets under her arm so she could prop her up without her arms getting tired, and we bundled the baby up in her blanket and hat. Kaydence relaxed with her eyes closedin her big sister's arms. She kept smiling, and Kaylee would make sure we knew her sister was smiling at her. I told Kaylee that she was probably just passing gas on her, and she said that she was and that she could feel it on her arms. It was really funny!
Kaydence was up to 25cc's of breast milk today! Wow, that was great news to hear that she is handling her feeds like a champ! Right before every feed, they pull out the remaining milk in her stomach from her feeding tube to see how much of it is left. Then they push it back in using the syringe, and begin her next feed. She is right where she should be each time they check, and she is digesting everything perfectly.
Before we left, one of the other nurses that was being trained by Paula the other day came up to talk to me. She wanted to make sure that I was okay, and said that she got worried this morning when I wasn't in the hospital bright and early. Once I left the other night when Terry insulted me, Penny (this nurse) said she went up to her and told her how wrong she was. Penny said that Terry had a tendency to do that to other parents, but had never seen it that bad. That made me feel better to know that I was not the only one...but I would really like to be the last parent that has to feel that way from her.
We left the hospital and treated ourselves to Outback...my favorite place to eat!! We had a very cheerful server named Crystal, and everything was amazing. We enjoyed talking with Kaylee about her week at school, and playing games in her kids coloring book. It was a great meal, and just a nice way to relax and enjoy my family time with the two of them. Having a good server can really make the difference, and we will request her every time we go back.
Friday, April 18, 2008
April 18, 2008 A Better Day
I got into the NICU around 9 this morning and I saw that Paula was our day nurse again. My heart was racing a mile a minute because I was still extremely sensitive from what had happened last night. I was very quiet, and really didn't to talk to anyone. I didn't even want to lift up the blanket on the isolette to see Kaydence because I felt like I would be bothering her and it would cause her to waste her calories.
Paula came over to ask me how I was doing, and as I was holding back tears, I told her I was fine. She kept asking me if I was sure, and that she wanted to talk about it. Well, that did it for me, and I started bawling my eyes out again. She sat and talked to me off and on (while checking on the babies) for about an hour and a half. I cried so hard and explained to her how devastated I was from what Terry had scolded me about. I started with day one of my arrival, and pointed out name by name of what each nurse had taught me and what each surgeon an physician had told me to do. I am there to help, I am my baby's biggest fan to help in any way to keep her healthy. Never once have I been told anything negative by anyone in that hospital. All the nurses have encouraged my help and have went out of their way to teach me about every detail and every procedure that was being done on my baby. That is my right, because she is my child, and I can't imagine being anywhere else but right there until she comes home.
Apparently, word spread fast last night and the Fortney's made a phone call to their night nurse to talk to him about it. When shift change at 7 a.m. came along this morning, the nurse manager had Terry in the office to discuss what happened. The nurse manager has not released the details about what is going to happen, but I heard that she is in some major trouble. From what I was told, I am not the first person that she has done that to, and this situation finally made the NICU put their foot down. Paula told me that I am welcomed there whole-heartedly and I have every right to want to learn about the procedures and daily cares of Kaydence. Also, my feelings and well being is just as important to the nurses as the baby's well being. So after my big cry with her, she did tell me that Tara (the nurse manager) wanted to have a meeting with me before I left. Unfortunately, I did not get the opportunity to speak with her because I had to leave the hospital shortly after the baby's 12:00 feed.
The Fortney's offered to drive me home today so that Larry did not have to make an 11 hour trip. We left after the noon feeding, went to the apartment, packed my stuff in the car and headed out. It was a nice trip home, but I felt bad for leaving the hospital so early. We picked up Kaylee from Izzy's, and Larry got home shortly after we did.
Larry was so excited to catch me up on everything that happened at the academy. He had a wonderful 3 days back and teared up when he was talking about how Kaydence has touched so many hearts in Charleston. So many eyes have been opened to how precious life can be. The cards that were given to us by everyone there were amazing to read, because so many people are praising God with us. Larry even said that he knows that Kaydence has helped bring one of his fellow officers to Christ. Now how awesome is that!
Update:
She is very stable with her saturation
She knows how to frown and stick out her lower lip
She has passed all the meconium out of her system
Lots of green dirty diapers
She is still eating every 3 hours
They are rotating her feeds from her mouth and her feeding tube so save her energy
They are continuing to increase her feeds every 6 hours
Still sleeping a lot...and that is great because it is allowing her to repair her body
Paula came over to ask me how I was doing, and as I was holding back tears, I told her I was fine. She kept asking me if I was sure, and that she wanted to talk about it. Well, that did it for me, and I started bawling my eyes out again. She sat and talked to me off and on (while checking on the babies) for about an hour and a half. I cried so hard and explained to her how devastated I was from what Terry had scolded me about. I started with day one of my arrival, and pointed out name by name of what each nurse had taught me and what each surgeon an physician had told me to do. I am there to help, I am my baby's biggest fan to help in any way to keep her healthy. Never once have I been told anything negative by anyone in that hospital. All the nurses have encouraged my help and have went out of their way to teach me about every detail and every procedure that was being done on my baby. That is my right, because she is my child, and I can't imagine being anywhere else but right there until she comes home.
Apparently, word spread fast last night and the Fortney's made a phone call to their night nurse to talk to him about it. When shift change at 7 a.m. came along this morning, the nurse manager had Terry in the office to discuss what happened. The nurse manager has not released the details about what is going to happen, but I heard that she is in some major trouble. From what I was told, I am not the first person that she has done that to, and this situation finally made the NICU put their foot down. Paula told me that I am welcomed there whole-heartedly and I have every right to want to learn about the procedures and daily cares of Kaydence. Also, my feelings and well being is just as important to the nurses as the baby's well being. So after my big cry with her, she did tell me that Tara (the nurse manager) wanted to have a meeting with me before I left. Unfortunately, I did not get the opportunity to speak with her because I had to leave the hospital shortly after the baby's 12:00 feed.
The Fortney's offered to drive me home today so that Larry did not have to make an 11 hour trip. We left after the noon feeding, went to the apartment, packed my stuff in the car and headed out. It was a nice trip home, but I felt bad for leaving the hospital so early. We picked up Kaylee from Izzy's, and Larry got home shortly after we did.
Larry was so excited to catch me up on everything that happened at the academy. He had a wonderful 3 days back and teared up when he was talking about how Kaydence has touched so many hearts in Charleston. So many eyes have been opened to how precious life can be. The cards that were given to us by everyone there were amazing to read, because so many people are praising God with us. Larry even said that he knows that Kaydence has helped bring one of his fellow officers to Christ. Now how awesome is that!
Update:
She is very stable with her saturation
She knows how to frown and stick out her lower lip
She has passed all the meconium out of her system
Lots of green dirty diapers
She is still eating every 3 hours
They are rotating her feeds from her mouth and her feeding tube so save her energy
They are continuing to increase her feeds every 6 hours
Still sleeping a lot...and that is great because it is allowing her to repair her body
Thursday, April 17, 2008
April 17, 2008 My Meltdown
**I'm really sorry for the late post...but I think you will understand after you read this**
Last night, I was offered the 2 bedroom apartment for a week from the hospital. I am fine with sleeping on the couch in the 1 bedroom...and asked them to find another family to bless. Kathy came back to me and said that no one could take it because it was only for a week, and she would really like me to take it and the Fortney's keep the 1 bedroom. So I took my suitcase down to the 2nd floor right before bed and unpacked it in the other apt. It was a little scary, and I couldn't fall asleep because my mind raced about all the unfinished business that I still have to do...but I fell asleep around 3 this morning. It was nice to sleep in a bed again.
Kaydence's nurse claimed that she refused to eat from a bottle all last night, so she pulled her feeding tube from her mouth and put it in her nose. I am not the happiest person about that, and I wish she would have called me first...but what's done is done. I don't like the tube in her nose AT ALL, but if she does well with her feeds they will remove it soon. A new nurse took over at 7 a.m., and she has been sucking the bottles down by mouth in less than a minute each time. Hmm....makes me think why Kaydence all of a sudden refused the bottle, and only for that nurse. These are the times where I wish I could sleep by her crib and never leave the hospital.
Kathy, my favorite person from Concierge Services, told me that my social worker is complaining that I have been put into the apartments for too long, and was questioning her why she has allowed me to stay in them up to this point. The social worker accused Kathy of being prejudice against other families and not breaking the two apartments up in small increments to each family so everything is "equal". Now, yesterday Kathy walked around twice and asked each and every family if they wanted the one apartment for the week, and both attempts were turned down by all the families. Most families are staying at the Ronald McDonald House, and they are fearful that they will lose their spot there if they leave.
My social worker is the only person up to this point that makes my blood boil, and I just avoid her so we don't have to speak. Larry and I pleaded for assistance from her when we first arrived, and she continued to blow us off. We went to the other social worker, and she said that she was not allowed to help us because we were not assigned to her. So a few days ago, we just decided to focus on doing all the research ourselves and start thinking about fundraisers to help out. So for Kathy to tell me this morning that our social worker is trying to start problems with me staying in the apartments...makes me extremely upset. I went down and grabbed something to eat so I could think it through, and I decided that I am not going to address the issue with her. It will not change this woman, and it would only cause conflict with her and Kathy. I'm going to let it slide off of me, and hope that she doesn't cause problems with me being able to stay near Kaydence. My grandmother used to always tell me to "kill them with kindness" when I was a little girl.
So I went up and spent the day checking in on the baby, making sure I was there for every feed, gave her a bath when the nurse told me it was time to, helped the nurse weigh her, and helped the nurse out with all the routine checks that have to be done. In between that time, I was calling a ton of people to make sure that all my paperwork is squared away with my job and getting physicians to sign off on medical documents for me. Paula, the day nurse, kept asking me if I was going to Kangaroo Care today but I declined because I could tell she was very tired. I wanted to let her rest, and I would Kangaroo with her another day soon.
Shift change at 7 p.m. came along, and Kaydence had the same nurse as last night. There was no hello, no smile...instead, she immediately walked up to me and started scolding me. I froze, and couldn't believe what I was hearing. It was extremely uncalled for, and she was accusing me of things that I did not do. Doug Fortney just happened to be standing there because we were going to leave the hospital in a few minutes to go back to the apartments. She said that I was exhausting my child, and that I was causing her to regress. She also told me that I was too involved in what the hospital was doing for my daughter and that most parents stay home and let the nurses do their jobs. That her only concern was for the babies and not the parents, so she was going to tell me what I needed to hear. These types of comments went on and on while I stood there doing everything I could to hold back tears. She said that I should not be holding my daughter at all and that to Kangaroo Care with her yesterday for almost an hour was way too long. I should not be holding her when I feed her because it makes her use too many calories, and that I should not even be Kangaroo Caring at all when she is in an isolette/incubator. I kept telling myself to think of a nice place,--not to focus on her insulting words--not to cry in front of her--not to scream and start cursing her out--and especially not to hit her in her mouth (even though I wanted to do all those things). I did fine, and I took it all in and did not argue with her at all. I was choking up but did not let any tears fall until she brought up my husband and my other daughter. I guess she was realizing that I was getting ready to cry, so she starts asking about where my husband was and how my other daughter felt about being a big sister and how often she had come to visit. I LOST IT, and started bawling my eyes out. "My husband isn't here, he is 8 1/2 hours away...and my daughter isn't here because we live too far away for me to stay with her, and she has only seen the baby twice...and I can't talk to her on the phone very much because I don't have any phone signal in the hospital." I grabbed all my things as fast as I could and I walked out of the room. My day nurse, Paula was still there and she grabbed my shoulders and told me that everything would be okay and to get some rest.
I went back to the room and threw the biggest pity party for myself. Looking at the whole day now that it is over...I really needed that cry. I have not had a solid cry since we found out that Kaydence had the SCT on December 28, 2007. I had been holding back so much tension and stress for all those months...and I finally let it all out. I am surprised that the people in the apartments next to me didn't come to check on me because it was a very loud, drawn out cry. I know that it is okay to have those times, and I knew that I would eventually have my meltdown...but I am upset that my night nurse was the final reason for it to come. I did not want to have a meltdown and be so far away from my husband. I really wanted to be in his arms, and I wanted us to have our big cry together. I feel like she took that from me for reasons that were unjust.
Sleep was difficult, even though my eyes were just about swelled shut. My eyes were closed, but my mind kept rewinding over how the day went so sour. Why is a social worker, who is supposed to be there to help me, instead is trying to hurt me? How could the night nurse even come up with the accusations that she did about me? Why was she so cold hearted and mean to me when I am there to be proactive parent...not someone who is causing harm to my child? Why is she telling me that I am doing everything wrong, when all I am doing is following what all the nurses and physicians are telling me to do? The physician told me to hold her during feeds, the nurses trained me how to feed her, the physician asked why I hadn't Kangaroo Cared yet, and the nurses are the ones that told me to do it for at least an hour, etc. She made me feel like a horrible parent to both of my children. I felt like I should "let" the nurses do their jobs, and my place is at home to be with Kaylee and not expect other people to raise her while I am at the baby's crib side. The thought of even holding her hand in the isolette choked me up and I was scared to show up at the hospital in the morning.
It was a really hard to hold all my frustrations in today. It was truly the biggest test I have had so far in my life to not lose my cool and go completely crazy. If I did and said everything I wanted to, I would have been handcuffed and escorted off that property. Honestly, all I could think about were my Pastors and my church. "Would Kevin and Beth be proud of me right now if I lost my cool? What if someone from my church that looked up to me saw my outburst? What if a mom in that room was searching for Christ, would I draw her to him?" Granted, I walked out of that hospital with more hurt in my heart than I have ever felt from a person...but I held my head high. I know that I am a better person for not pulling all that negativity out on her. My dad told me something last August that really stuck with me. He said to never argue with a fool, because someone walking by could get the two of you confused. He's right.
Last night, I was offered the 2 bedroom apartment for a week from the hospital. I am fine with sleeping on the couch in the 1 bedroom...and asked them to find another family to bless. Kathy came back to me and said that no one could take it because it was only for a week, and she would really like me to take it and the Fortney's keep the 1 bedroom. So I took my suitcase down to the 2nd floor right before bed and unpacked it in the other apt. It was a little scary, and I couldn't fall asleep because my mind raced about all the unfinished business that I still have to do...but I fell asleep around 3 this morning. It was nice to sleep in a bed again.
Kaydence's nurse claimed that she refused to eat from a bottle all last night, so she pulled her feeding tube from her mouth and put it in her nose. I am not the happiest person about that, and I wish she would have called me first...but what's done is done. I don't like the tube in her nose AT ALL, but if she does well with her feeds they will remove it soon. A new nurse took over at 7 a.m., and she has been sucking the bottles down by mouth in less than a minute each time. Hmm....makes me think why Kaydence all of a sudden refused the bottle, and only for that nurse. These are the times where I wish I could sleep by her crib and never leave the hospital.
Kathy, my favorite person from Concierge Services, told me that my social worker is complaining that I have been put into the apartments for too long, and was questioning her why she has allowed me to stay in them up to this point. The social worker accused Kathy of being prejudice against other families and not breaking the two apartments up in small increments to each family so everything is "equal". Now, yesterday Kathy walked around twice and asked each and every family if they wanted the one apartment for the week, and both attempts were turned down by all the families. Most families are staying at the Ronald McDonald House, and they are fearful that they will lose their spot there if they leave.
My social worker is the only person up to this point that makes my blood boil, and I just avoid her so we don't have to speak. Larry and I pleaded for assistance from her when we first arrived, and she continued to blow us off. We went to the other social worker, and she said that she was not allowed to help us because we were not assigned to her. So a few days ago, we just decided to focus on doing all the research ourselves and start thinking about fundraisers to help out. So for Kathy to tell me this morning that our social worker is trying to start problems with me staying in the apartments...makes me extremely upset. I went down and grabbed something to eat so I could think it through, and I decided that I am not going to address the issue with her. It will not change this woman, and it would only cause conflict with her and Kathy. I'm going to let it slide off of me, and hope that she doesn't cause problems with me being able to stay near Kaydence. My grandmother used to always tell me to "kill them with kindness" when I was a little girl.
So I went up and spent the day checking in on the baby, making sure I was there for every feed, gave her a bath when the nurse told me it was time to, helped the nurse weigh her, and helped the nurse out with all the routine checks that have to be done. In between that time, I was calling a ton of people to make sure that all my paperwork is squared away with my job and getting physicians to sign off on medical documents for me. Paula, the day nurse, kept asking me if I was going to Kangaroo Care today but I declined because I could tell she was very tired. I wanted to let her rest, and I would Kangaroo with her another day soon.
Shift change at 7 p.m. came along, and Kaydence had the same nurse as last night. There was no hello, no smile...instead, she immediately walked up to me and started scolding me. I froze, and couldn't believe what I was hearing. It was extremely uncalled for, and she was accusing me of things that I did not do. Doug Fortney just happened to be standing there because we were going to leave the hospital in a few minutes to go back to the apartments. She said that I was exhausting my child, and that I was causing her to regress. She also told me that I was too involved in what the hospital was doing for my daughter and that most parents stay home and let the nurses do their jobs. That her only concern was for the babies and not the parents, so she was going to tell me what I needed to hear. These types of comments went on and on while I stood there doing everything I could to hold back tears. She said that I should not be holding my daughter at all and that to Kangaroo Care with her yesterday for almost an hour was way too long. I should not be holding her when I feed her because it makes her use too many calories, and that I should not even be Kangaroo Caring at all when she is in an isolette/incubator. I kept telling myself to think of a nice place,--not to focus on her insulting words--not to cry in front of her--not to scream and start cursing her out--and especially not to hit her in her mouth (even though I wanted to do all those things). I did fine, and I took it all in and did not argue with her at all. I was choking up but did not let any tears fall until she brought up my husband and my other daughter. I guess she was realizing that I was getting ready to cry, so she starts asking about where my husband was and how my other daughter felt about being a big sister and how often she had come to visit. I LOST IT, and started bawling my eyes out. "My husband isn't here, he is 8 1/2 hours away...and my daughter isn't here because we live too far away for me to stay with her, and she has only seen the baby twice...and I can't talk to her on the phone very much because I don't have any phone signal in the hospital." I grabbed all my things as fast as I could and I walked out of the room. My day nurse, Paula was still there and she grabbed my shoulders and told me that everything would be okay and to get some rest.
I went back to the room and threw the biggest pity party for myself. Looking at the whole day now that it is over...I really needed that cry. I have not had a solid cry since we found out that Kaydence had the SCT on December 28, 2007. I had been holding back so much tension and stress for all those months...and I finally let it all out. I am surprised that the people in the apartments next to me didn't come to check on me because it was a very loud, drawn out cry. I know that it is okay to have those times, and I knew that I would eventually have my meltdown...but I am upset that my night nurse was the final reason for it to come. I did not want to have a meltdown and be so far away from my husband. I really wanted to be in his arms, and I wanted us to have our big cry together. I feel like she took that from me for reasons that were unjust.
Sleep was difficult, even though my eyes were just about swelled shut. My eyes were closed, but my mind kept rewinding over how the day went so sour. Why is a social worker, who is supposed to be there to help me, instead is trying to hurt me? How could the night nurse even come up with the accusations that she did about me? Why was she so cold hearted and mean to me when I am there to be proactive parent...not someone who is causing harm to my child? Why is she telling me that I am doing everything wrong, when all I am doing is following what all the nurses and physicians are telling me to do? The physician told me to hold her during feeds, the nurses trained me how to feed her, the physician asked why I hadn't Kangaroo Cared yet, and the nurses are the ones that told me to do it for at least an hour, etc. She made me feel like a horrible parent to both of my children. I felt like I should "let" the nurses do their jobs, and my place is at home to be with Kaylee and not expect other people to raise her while I am at the baby's crib side. The thought of even holding her hand in the isolette choked me up and I was scared to show up at the hospital in the morning.
It was a really hard to hold all my frustrations in today. It was truly the biggest test I have had so far in my life to not lose my cool and go completely crazy. If I did and said everything I wanted to, I would have been handcuffed and escorted off that property. Honestly, all I could think about were my Pastors and my church. "Would Kevin and Beth be proud of me right now if I lost my cool? What if someone from my church that looked up to me saw my outburst? What if a mom in that room was searching for Christ, would I draw her to him?" Granted, I walked out of that hospital with more hurt in my heart than I have ever felt from a person...but I held my head high. I know that I am a better person for not pulling all that negativity out on her. My dad told me something last August that really stuck with me. He said to never argue with a fool, because someone walking by could get the two of you confused. He's right.
Wednesday, April 16, 2008
April 16, 2008 The first day without daddy
It was really hard to get a good night's rest without Larry. I kept waking up trying to wrap my leg around his...lol. The Fortney's and I overslept a little and were running late to get to the hospital by 8:30 a.m. so Doug could get to work in Sterling, VA in time. We ran around like crazy, but it all worked out okay.
Kaydence was changed into her 4 different bed this morning. They took her crib away from her and put her back in an incubator with an immobile lid. Once the nurse explained why, I was completely cool with it. Kaydence is still a week or so too young to be able to regulate her body temperature, and she is burning a whole lot of calories to keep regulating it properly. By putting her in an incubator, it will regulate her temperature for her...and she can use those calories to heal and repair her body. So yea, I am happy that this nurse decided to change her beds out. She said to keep her in the incubator for a week or so, and her get some more weight on her before we go to the crib again.
They had to make room for more babies to come into the NICU, so she was moved into the "procedure room" with two other babies. No procedures need to be done, it was just an empty room so they moved three of us in there so the new babies could go into the bay's. I like this room because I can pump without a ton of people walking back and forth around me.
I texted Larry all the updates while he was driving to the academy. We are missing each other a lot, and he is having the same emotional breakdowns that I am having. He just didn't want to cry in front of me because he knew that would make it even worse to let go yesterday. I don't know how he held it back, but Chris Fortney said that he choked up when he asked them to take care of me. She said she had to hold back from crying during it....lol. Oh, if the NICU had a penny for every time someone cried!!
FUNDRAISER: Chris Fortney approached me last week and said that she would like to have a fundraiser in Kaydence's name. It is with a children's book company called Usborne Books. 30% of all the proceeds would go to Kaydence and would help us out with all the medical bills that are already starting to pile up...not to mention all the ones that are in our future. I will be carrying flyers around with me at church that has a good handful of books to select from, but this website has over 1000 to view. The closing date for this fundraiser is April 30, 2008. If you want to order books for your children and want it shipped to your house...you can do that, or I can have all the orders shipped to me and I can pass each order out to you.
The Fundraiser Website is www.ubah.com/HOS112750
*Feel free to pass this out to family, friends, and coworkers as well. I have seen samples of these books, and most are hardback books that are extremely nice quality. Every order will benefit both your children and our little Kaydence. We appreciate all the help we can get. :)
I got to Kangaroo Care with the baby this evening. That is when they ask you to have skin to skin contact on your chest so the she can feel my heartbeat. It was so amazing, and I could've Kangaroo Cared all day long. It was so relaxing to feel her body so close to mine, and she was so calm while we spent that time together.
Larry called me tonight from the academy, and it was wonderful to hear his voice. I felt like I was in high school again with the little butterflies in my stomach when I heard his voice. He gave me an update on his first day back, and I could tell that he was glad to be back there. I know he misses us as much as we miss him. He will home in a little over a week, and much closer to us.
He said that everyone rounded up a donation and presented him with two very nice cards. Wow, that was a pleasant surprise for the both of us. We are very blessed.
Update:
2 DIRTY DIAPERS...after they performed a rectal stimulation on her
still eating 5 cc's every 3 hours
Kangaroo Cared for one hour
Incubated to regulate her temp
Removed her steri stips off of her scar, because she had meconium all over them
Kaydence was changed into her 4 different bed this morning. They took her crib away from her and put her back in an incubator with an immobile lid. Once the nurse explained why, I was completely cool with it. Kaydence is still a week or so too young to be able to regulate her body temperature, and she is burning a whole lot of calories to keep regulating it properly. By putting her in an incubator, it will regulate her temperature for her...and she can use those calories to heal and repair her body. So yea, I am happy that this nurse decided to change her beds out. She said to keep her in the incubator for a week or so, and her get some more weight on her before we go to the crib again.
They had to make room for more babies to come into the NICU, so she was moved into the "procedure room" with two other babies. No procedures need to be done, it was just an empty room so they moved three of us in there so the new babies could go into the bay's. I like this room because I can pump without a ton of people walking back and forth around me.
I texted Larry all the updates while he was driving to the academy. We are missing each other a lot, and he is having the same emotional breakdowns that I am having. He just didn't want to cry in front of me because he knew that would make it even worse to let go yesterday. I don't know how he held it back, but Chris Fortney said that he choked up when he asked them to take care of me. She said she had to hold back from crying during it....lol. Oh, if the NICU had a penny for every time someone cried!!
FUNDRAISER: Chris Fortney approached me last week and said that she would like to have a fundraiser in Kaydence's name. It is with a children's book company called Usborne Books. 30% of all the proceeds would go to Kaydence and would help us out with all the medical bills that are already starting to pile up...not to mention all the ones that are in our future. I will be carrying flyers around with me at church that has a good handful of books to select from, but this website has over 1000 to view. The closing date for this fundraiser is April 30, 2008. If you want to order books for your children and want it shipped to your house...you can do that, or I can have all the orders shipped to me and I can pass each order out to you.
The Fundraiser Website is www.ubah.com/HOS112750
*Feel free to pass this out to family, friends, and coworkers as well. I have seen samples of these books, and most are hardback books that are extremely nice quality. Every order will benefit both your children and our little Kaydence. We appreciate all the help we can get. :)
I got to Kangaroo Care with the baby this evening. That is when they ask you to have skin to skin contact on your chest so the she can feel my heartbeat. It was so amazing, and I could've Kangaroo Cared all day long. It was so relaxing to feel her body so close to mine, and she was so calm while we spent that time together.
Larry called me tonight from the academy, and it was wonderful to hear his voice. I felt like I was in high school again with the little butterflies in my stomach when I heard his voice. He gave me an update on his first day back, and I could tell that he was glad to be back there. I know he misses us as much as we miss him. He will home in a little over a week, and much closer to us.
He said that everyone rounded up a donation and presented him with two very nice cards. Wow, that was a pleasant surprise for the both of us. We are very blessed.
Update:
2 DIRTY DIAPERS...after they performed a rectal stimulation on her
still eating 5 cc's every 3 hours
Kangaroo Cared for one hour
Incubated to regulate her temp
Removed her steri stips off of her scar, because she had meconium all over them
April 15, 2008 Wide Awake
Today will go in the record books as the best day ever in her recovery so far. She was successful with everything she attempted from morning to night. Larry and I called to check on her in the morning to make sure she was okay. We decided to hang out in the apartment for a little while and just cuddle and watch TV. We got to the hospital a little after 11 a.m. and I called it a night around 9:30 p.m.
We took lots of pictures and video taped her often today when she would do really cute things that she has never done before. When she was awake, her eyes were wide open and she even smiled a lot at us. I am sure it was just gas, but we loved every gassy smile she gave us! She would lick her lips before and after feedings, and her tongue is the cutest little thing in the world! Her daddy held her for a long time, and she wouldn't take her eyes off of him. I was taking pictures, and as soon as she saw the camera she would close her eyes to block the flash. It took me forever to get shots with her eyes open.
Larry's grandmother, Ellen Mae and his step-mom, Liz came to visit today and they got the chance to hold her for the first time. Now that she is stable, we can hold her as much as we want...so she was rarely in her crib today. She loves being held and snuggled in her blankets, but she always tries to kick one of her feet out of the bottom. So she will have one freezing foot, and one warm one.
Liz treated us to dinner at the cafeteria and we had a nice time just catching up with them about how everyone is doing back home. After we were done eating, we had to head upstairs real quick to be there for her 6 p.m. feeding. They were so excited to see her taking milk from a bottle.
The day that I have been dreading has come, and Larry has to return to the police academy. He was going to leave first thing tomorrow morning for the 8 1/2 hour drive back, but he decided tonight that he would like to go home and sleep in our bed before he left. So shortly after our family left, he told me that he wanted to head home too. I really intended on staying strong in front of him...but I just couldn't. I broke down and could not stop...it was pitiful! I walked away a few times so he didn't have to see me, but it was hard to calm down about it. Now, the academy is not forcing him to come back, they have been extremely supportive with Larry being here for his family. We know that it is the right thing to do by going back and finishing up the final weeks with his classmates. I totally support his decision to return to Charleston, and I couldn't be more proud of him. I am just going to miss him being here and being my rock through all of this. Kaydence has never been more stable, so that has helped his decision to finish up the academy.
Christine Fortney was so upset the other day because Doug had to return to work. She cried all day long, and I didn't really know what to say to her--because I knew I was going to be just as bad when Larry left. Doug leaves in the morning, and comes right back after his shift is done. She told Larry that it was so hard for her because it was the first time they had been apart in 2 months. Larry told her that it would be hard on us because this is the first time we could be together in 3 months. We have not left each other's sides since the academy let him come home, and I have cherished every second. I feel empty now that he is not here, but they promised that he will be able to call me to check up on us. I will take what I can get...lol!
Update:
She is eating 5 cc's every 3 hours now
Wide awake, opening both eyes
I think her right eye is slightly infected, they will ask the doctor's tomorrow.
She smiles, yawns, sneezes, and even gets the hiccups
Still no dirty diapers, that makes 3 days in a row
She is weighing in at 4 lb 6 oz now. She needs to be over 5 lbs to go home.
We took lots of pictures and video taped her often today when she would do really cute things that she has never done before. When she was awake, her eyes were wide open and she even smiled a lot at us. I am sure it was just gas, but we loved every gassy smile she gave us! She would lick her lips before and after feedings, and her tongue is the cutest little thing in the world! Her daddy held her for a long time, and she wouldn't take her eyes off of him. I was taking pictures, and as soon as she saw the camera she would close her eyes to block the flash. It took me forever to get shots with her eyes open.
Larry's grandmother, Ellen Mae and his step-mom, Liz came to visit today and they got the chance to hold her for the first time. Now that she is stable, we can hold her as much as we want...so she was rarely in her crib today. She loves being held and snuggled in her blankets, but she always tries to kick one of her feet out of the bottom. So she will have one freezing foot, and one warm one.
Liz treated us to dinner at the cafeteria and we had a nice time just catching up with them about how everyone is doing back home. After we were done eating, we had to head upstairs real quick to be there for her 6 p.m. feeding. They were so excited to see her taking milk from a bottle.
The day that I have been dreading has come, and Larry has to return to the police academy. He was going to leave first thing tomorrow morning for the 8 1/2 hour drive back, but he decided tonight that he would like to go home and sleep in our bed before he left. So shortly after our family left, he told me that he wanted to head home too. I really intended on staying strong in front of him...but I just couldn't. I broke down and could not stop...it was pitiful! I walked away a few times so he didn't have to see me, but it was hard to calm down about it. Now, the academy is not forcing him to come back, they have been extremely supportive with Larry being here for his family. We know that it is the right thing to do by going back and finishing up the final weeks with his classmates. I totally support his decision to return to Charleston, and I couldn't be more proud of him. I am just going to miss him being here and being my rock through all of this. Kaydence has never been more stable, so that has helped his decision to finish up the academy.
Christine Fortney was so upset the other day because Doug had to return to work. She cried all day long, and I didn't really know what to say to her--because I knew I was going to be just as bad when Larry left. Doug leaves in the morning, and comes right back after his shift is done. She told Larry that it was so hard for her because it was the first time they had been apart in 2 months. Larry told her that it would be hard on us because this is the first time we could be together in 3 months. We have not left each other's sides since the academy let him come home, and I have cherished every second. I feel empty now that he is not here, but they promised that he will be able to call me to check up on us. I will take what I can get...lol!
Update:
She is eating 5 cc's every 3 hours now
Wide awake, opening both eyes
I think her right eye is slightly infected, they will ask the doctor's tomorrow.
She smiles, yawns, sneezes, and even gets the hiccups
Still no dirty diapers, that makes 3 days in a row
She is weighing in at 4 lb 6 oz now. She needs to be over 5 lbs to go home.
Tuesday, April 15, 2008
April 14, 2008 Back to Children's for the Week
Bright and early, we were in Liberty Tax Services off of King Street getting our taxes done. Chad was our accountant, and he was a really nice person to work with. His customer service skills were great, and we felt very comfortable with talking to him. We told him about our little miracle and he shared pictures of his baby boy. After signing all the paperwork to process our taxes, he told us that there was no charge! We were so touched, and felt very blessed by him. He has a customer for life, and we will definitely always have good memories from his nice gesture.
We kissed Kaylee good bye and Larry dropped her off at school. That was difficult for me, but I know that she is in good hands for the week while we are gone. Kaylee is having a blast being away from home! She gets to have friends to play with around the clock, and she isn't even worried about calling me! I still send her little love text messages on her cell phone so she can read them at bedtime.
We finished up some cleaning, laundry, litter boxes (I could hear Larry gagging while he was cleaning them), and other little things around the house. We went to Wal-mart to get our list of things, and ate Subway for lunch. Larry and I stopped at one more place to get something very important to me: AN ELECTRIC BREAST PUMP! I will spare you the stories, but trust me...I am done with my manual one! Izzy rounded up her old pump and loaned it to me. Oh, that is going to make things so much easier on me. Larry will be able to sleep better too because I won't be shaking the bed trying to yank on my manual one in the middle of the night. lol.
We get to the hospital and our nurse said that we just missed someone who dropped off a gift to us. I went to lift it and it was so heavy that I had to have Larry get it for me. We open it up to find a huge assortment of snacks, drinks, advil, etc. There was even a gas card to help us with traveling back and forth! The card was beautiful, and to make it even more touching, the gift bag was from a family that we haven't met yet! Wow, that was moment that took both of us back. How special are we to have that happen! Thanks so much!
Our little baby is on a mission to get out of this hospital! When we got there, the nurse told us that she was given breast milk and took it like a pro! It was time for her to eat again, and they asked me if I wanted to feed her. I thought they were going to show me how to put the milk in her OC tube, but they handed me a bottle with a nipple on it! They said that she sucked down her first feeding from a nipple earlier, and our mouth's fell open. So I got even more excited to feed her...and yea, she wouldn't do it for me! So we put it in her tube and watched it go down like that. They also said that she was looking around all day long, and crying her little head off...but she didn't do that for us either. She was tired and wanted to relax in my arms, and that is okay with me.
Update:
SHE WAS FINALLY GIVEN BREAST MILK! (5 cc's every 6 hours)
No dirty diapers for 2 days
She is still on her vapotherm, but on minimal settings
She cries when she gets mad :)
She is opening up both her eyes and looking around
Extremely stable!
We left the hospital with the Fortney's and they treated us to Ruby Tuesday's for dinner. That was a great surprise! Looking at the whole day, we were blessed by everyone we came in contact with. God is amazing!
We kissed Kaylee good bye and Larry dropped her off at school. That was difficult for me, but I know that she is in good hands for the week while we are gone. Kaylee is having a blast being away from home! She gets to have friends to play with around the clock, and she isn't even worried about calling me! I still send her little love text messages on her cell phone so she can read them at bedtime.
We finished up some cleaning, laundry, litter boxes (I could hear Larry gagging while he was cleaning them), and other little things around the house. We went to Wal-mart to get our list of things, and ate Subway for lunch. Larry and I stopped at one more place to get something very important to me: AN ELECTRIC BREAST PUMP! I will spare you the stories, but trust me...I am done with my manual one! Izzy rounded up her old pump and loaned it to me. Oh, that is going to make things so much easier on me. Larry will be able to sleep better too because I won't be shaking the bed trying to yank on my manual one in the middle of the night. lol.
We get to the hospital and our nurse said that we just missed someone who dropped off a gift to us. I went to lift it and it was so heavy that I had to have Larry get it for me. We open it up to find a huge assortment of snacks, drinks, advil, etc. There was even a gas card to help us with traveling back and forth! The card was beautiful, and to make it even more touching, the gift bag was from a family that we haven't met yet! Wow, that was moment that took both of us back. How special are we to have that happen! Thanks so much!
Our little baby is on a mission to get out of this hospital! When we got there, the nurse told us that she was given breast milk and took it like a pro! It was time for her to eat again, and they asked me if I wanted to feed her. I thought they were going to show me how to put the milk in her OC tube, but they handed me a bottle with a nipple on it! They said that she sucked down her first feeding from a nipple earlier, and our mouth's fell open. So I got even more excited to feed her...and yea, she wouldn't do it for me! So we put it in her tube and watched it go down like that. They also said that she was looking around all day long, and crying her little head off...but she didn't do that for us either. She was tired and wanted to relax in my arms, and that is okay with me.
Update:
SHE WAS FINALLY GIVEN BREAST MILK! (5 cc's every 6 hours)
No dirty diapers for 2 days
She is still on her vapotherm, but on minimal settings
She cries when she gets mad :)
She is opening up both her eyes and looking around
Extremely stable!
We left the hospital with the Fortney's and they treated us to Ruby Tuesday's for dinner. That was a great surprise! Looking at the whole day, we were blessed by everyone we came in contact with. God is amazing!
Sunday, April 13, 2008
April 13, 2008
Wow, it was so nice to sleep in my own bed last night! Larry and I both woke up with horrible headaches, but we think it was because we slept so well! I had forgotten how nice it was to be home and be able to lay next to my husband without any worries. I have a new appreciation for my mattress that I complained about when we had to buy it last year. I thought it was way too expensive...you cannot put a price on comfort!
We called to check up on Kaydence and they told us that she pulled the breathing tube out around 12:15 today! They had planned on taking it out anyway sometime this afternoon...but she helped them out a little. She hates that thing, and we have been taking her hands off of it for days now. She had another great day, and the nurse's have been very happy with her strength that she is getting back.
Larry and I treated Kaylee to Buffalo Wild Wings for lunch today. She loves going there with her dad because we get a booth that you can play games while you are sitting and eating. They have so much fun playing those silly games...it is a real treat for her when we go there. We even let her order ice cream today instead of waiting until we got home!
Overall, even though I miss my baby terribly, I am glad we came home to get some rest. I took a nice long nap this afternoon and we were able to straighten up around the house a little. I know that I am going to have to give in and let my friends clean my house before Kaydence comes home, but it is hard to welcome the idea. I have had so many people offer to cook and clean for us, and I cringe at the idea of someone coming into my house when it is filthy! Ah, not only will they smell the littler boxes...but they are willing to CLEAN THEM TOO! That is embarrassing to me, but I guess I will have to get over it. I told Larry that if we just divide up the weeks to one person per week....we could get our house cleaned and our meals cooked every week for a year! Now that sounds like a great idea...lol lol lol!
Update:
She is doing better than ever
We extabated herself (pulled the breathing tube out)
Now she is on Nasotherm (moist air flow in her nose)
They are supposed to finally feed her breast milk tomorrow!
She is gaining weight now rather than losing weight.
We called to check up on Kaydence and they told us that she pulled the breathing tube out around 12:15 today! They had planned on taking it out anyway sometime this afternoon...but she helped them out a little. She hates that thing, and we have been taking her hands off of it for days now. She had another great day, and the nurse's have been very happy with her strength that she is getting back.
Larry and I treated Kaylee to Buffalo Wild Wings for lunch today. She loves going there with her dad because we get a booth that you can play games while you are sitting and eating. They have so much fun playing those silly games...it is a real treat for her when we go there. We even let her order ice cream today instead of waiting until we got home!
Overall, even though I miss my baby terribly, I am glad we came home to get some rest. I took a nice long nap this afternoon and we were able to straighten up around the house a little. I know that I am going to have to give in and let my friends clean my house before Kaydence comes home, but it is hard to welcome the idea. I have had so many people offer to cook and clean for us, and I cringe at the idea of someone coming into my house when it is filthy! Ah, not only will they smell the littler boxes...but they are willing to CLEAN THEM TOO! That is embarrassing to me, but I guess I will have to get over it. I told Larry that if we just divide up the weeks to one person per week....we could get our house cleaned and our meals cooked every week for a year! Now that sounds like a great idea...lol lol lol!
Update:
She is doing better than ever
We extabated herself (pulled the breathing tube out)
Now she is on Nasotherm (moist air flow in her nose)
They are supposed to finally feed her breast milk tomorrow!
She is gaining weight now rather than losing weight.
Saturday, April 12, 2008
April 12, 2008 Going Home
Woohoo....we slept in!! We got up a couple of times, but fell right back to sleep. Once we were all showered and packed up, we went to the hospital to spend some time with Kaydence before we headed home for the weekend.
At the hospital, Kaylee read a handful of books to her sister. It was sweet to watch her concentrate so hard on all her pronunciations of her words and changing the tone in her voice to make the story interesting. The last book she read to her was called Koko's Kitten, and I was preparing myself for some tissues. Yesterday in the waiting room, I started reading that book and cried my eyes out because it was so sad. Larry snatched the book out of my hands and wouldn't let me finish it because I was crying so hard...lol! So as soon as Kaylee got to that page, I could hear her little voice quivering. She struggled to finish the page, and handed it to me. Larry asked her why she stopped reading it, and she started crying. I look at him and realized that all three of us were crying over the stinking book!! I asked him to finish reading it to us, and all of us continued to cry until it was done! lol. Laughing because you are crying is good therapy...and we definitely laughed about how foolish we looked.
We got home around 6 p.m. and unloaded the car. It is nice to be home, but I am really missing my baby. I know that we need the break from the hospital, but I don't want a break from her. I really don't want to come home for good until she is in my arms...but I don't know if that is going to be possible. I hope so...but I need to make sure Kaylee is taken care of too.
Update:
She was taken off her bili phototherapy machine. They think her jaundice is gone.
She is on the lowest settings possible on her ventilator.
They plan on pulling her ventilator on Monday if she continues to do well.
She is openings her eyes more and moving her limbs around.
They are planning on doing another ultrasound on her brain on Monday.
At the hospital, Kaylee read a handful of books to her sister. It was sweet to watch her concentrate so hard on all her pronunciations of her words and changing the tone in her voice to make the story interesting. The last book she read to her was called Koko's Kitten, and I was preparing myself for some tissues. Yesterday in the waiting room, I started reading that book and cried my eyes out because it was so sad. Larry snatched the book out of my hands and wouldn't let me finish it because I was crying so hard...lol! So as soon as Kaylee got to that page, I could hear her little voice quivering. She struggled to finish the page, and handed it to me. Larry asked her why she stopped reading it, and she started crying. I look at him and realized that all three of us were crying over the stinking book!! I asked him to finish reading it to us, and all of us continued to cry until it was done! lol. Laughing because you are crying is good therapy...and we definitely laughed about how foolish we looked.
We got home around 6 p.m. and unloaded the car. It is nice to be home, but I am really missing my baby. I know that we need the break from the hospital, but I don't want a break from her. I really don't want to come home for good until she is in my arms...but I don't know if that is going to be possible. I hope so...but I need to make sure Kaylee is taken care of too.
Update:
She was taken off her bili phototherapy machine. They think her jaundice is gone.
She is on the lowest settings possible on her ventilator.
They plan on pulling her ventilator on Monday if she continues to do well.
She is openings her eyes more and moving her limbs around.
They are planning on doing another ultrasound on her brain on Monday.
Friday, April 11, 2008
April 11, 2008 Sleep-over
I want to take the time to thank each and every one of you for checking our blog. Larry is addicted to checking how many people have looked at the site, and we look forward to reading all of the comments daily. Again, I cry when I read them....but they are good cry's!!! lol. We are taken back by all the people who care so much about our family. We know that we are not in this alone BY FAR, and all of us are on the right side of God with Kaydence.
Her bili count has gone down, so she is responding to her treatments for jaundice very well. She is looking a little pale and her skin is drying out...but that is because of her treatments. Her respiration is wonderful, and she is slowly starting to bounce back. We really like her nurse (Allison) that is working with her today because she truly cares about all the babies. Allison talks to her, and really pays attention to Kaydence's likes and dislikes. There are a handful of nurses that really care about our baby...and they really try to keep her as comfortable as possible. We are so grateful for them.
Christine Fortney and I were having McDonald's french fry cravings, so Larry drove us to McDonald's for lunch. Larry called them "post pregnancy cravings"...but I like to refer to them as "preemie cravings" instead. It was such a bright and beautiful day outside, and it was nice to feel the wind on my face. I don't see the light of day too much anymore...we get to the hospital early in the morning and leave late at night. Leaving the hospital for lunch turned out to be a really nice break from the hospital walls.
After lunch, I got to hold my baby girl for 3 long hours. I was shocked when Allison asked me if I wanted to hold her. I didn't think we were allowed to while she had a breathing tube in, but she said that it was okay. I asked Larry if he wanted to hold her instead, but he is too scared to hold her right now. He is emotionally scarred by what happened last time he held her, and it is too early for him to take that chance of it happening again. So during the wonderful 3 hours, I sang my favorite Christian songs to her. I used to sing to her all the time when I was pregnant, and I am sure she misses things we used to do together. I even turned on my IPOD and shared the headphones with her. I listened with one ear, and put the other one near her little head. So she is going to grow up to love the Casting Crowns and Hillsong.
Brenda and Jason Pickett were nice enough to bring Kaylee to us tonight at the hospital. They wanted to see the baby, and didn't want us to waste a trip driving back home to get her. I don't know what I would do without our church family. The Living Room helped Larry and I save our marriage 2 years ago, and now they are helping us save our daughter. Each and every person, including Brenda and Jason are so special to us. We are so loved, and we know that their arms are wrapped around us even when we aren't physically with them.
We said goodnight to Kaydence and took Kaylee back to the little apartment we are staying at. She thought it was really neat to sleep where mommy and daddy sleep during the week. She gets along with the Fortney's, and they played around with her until we hit the couch. Kaylee brought along an air mattress to sleep on because Larry and I barely fit on the sofa bed!
One more day down....one more day closer to bringing Kaydence home.
Her bili count has gone down, so she is responding to her treatments for jaundice very well. She is looking a little pale and her skin is drying out...but that is because of her treatments. Her respiration is wonderful, and she is slowly starting to bounce back. We really like her nurse (Allison) that is working with her today because she truly cares about all the babies. Allison talks to her, and really pays attention to Kaydence's likes and dislikes. There are a handful of nurses that really care about our baby...and they really try to keep her as comfortable as possible. We are so grateful for them.
Christine Fortney and I were having McDonald's french fry cravings, so Larry drove us to McDonald's for lunch. Larry called them "post pregnancy cravings"...but I like to refer to them as "preemie cravings" instead. It was such a bright and beautiful day outside, and it was nice to feel the wind on my face. I don't see the light of day too much anymore...we get to the hospital early in the morning and leave late at night. Leaving the hospital for lunch turned out to be a really nice break from the hospital walls.
After lunch, I got to hold my baby girl for 3 long hours. I was shocked when Allison asked me if I wanted to hold her. I didn't think we were allowed to while she had a breathing tube in, but she said that it was okay. I asked Larry if he wanted to hold her instead, but he is too scared to hold her right now. He is emotionally scarred by what happened last time he held her, and it is too early for him to take that chance of it happening again. So during the wonderful 3 hours, I sang my favorite Christian songs to her. I used to sing to her all the time when I was pregnant, and I am sure she misses things we used to do together. I even turned on my IPOD and shared the headphones with her. I listened with one ear, and put the other one near her little head. So she is going to grow up to love the Casting Crowns and Hillsong.
Brenda and Jason Pickett were nice enough to bring Kaylee to us tonight at the hospital. They wanted to see the baby, and didn't want us to waste a trip driving back home to get her. I don't know what I would do without our church family. The Living Room helped Larry and I save our marriage 2 years ago, and now they are helping us save our daughter. Each and every person, including Brenda and Jason are so special to us. We are so loved, and we know that their arms are wrapped around us even when we aren't physically with them.
We said goodnight to Kaydence and took Kaylee back to the little apartment we are staying at. She thought it was really neat to sleep where mommy and daddy sleep during the week. She gets along with the Fortney's, and they played around with her until we hit the couch. Kaylee brought along an air mattress to sleep on because Larry and I barely fit on the sofa bed!
One more day down....one more day closer to bringing Kaydence home.
April 10, 2008 Surprise Visit
Yes, it is official....I need rest! I feel like I just had surgery yesterday and I am buckled over with pain. Today I sat by her bedside and did not get up unless it was absolutely necessary. I ate snacks, read my book, filled out paperwork, texted friends, and even pumped in my rocking chair next to Kaydence. I only got up for lunch, to use the restroom, and to put my milk in the freezer. Everyone should be proud of me! lol
It was really hard to look at Kaydence today. My emotions are over-flowing because all the adrenaline is wearing off. I cried off and on all day, and it was very embarrassing. It didn't matter what it was, I would cry about it. I am even tearing up just typing about it right now...lol...oh my--the joys of hormones! Kaydence took at least 4 steps back since her little episode yesterday. She is completely limp and unresponsive. She won't hold our fingers and won't even wiggle her little toes today. Her breathing is what upsets us the most because she is extremely tipkitnic. Her ribs are moving up and down so fast that they look like they are stretchy rubber bands.
They had her incubator closed up and had a blanket over top of it all day. That was good for me so I didn't have to look at her like that. I would peak in every hour to let her know I was there, but I couldn't look at her too long. Larry didn't stay by her bedside much at all today...that is how he coped with her regression, and that's okay.
Update:
She now has jaundice, and was on bili lights all day
They think she got an infection from her relapse. (took her blood to test it)
They started her on antibiotics just in case it is an infection
Two more dirty diapers
Lots of sleeping today so she can heal her body
Unstable respiration and saturation's all day
**I got a huge surprise later in the evening that made my day all better! Larry peaks around the corner and tells me that he had a surprise for me...and around comes my baby girl Kaylee! I was in complete shock and apparently starting saying "that's my daughter!". I barely remember what happened for probably the first 10 minutes because I just couldn't believe that she was with me. Izzy, Todd, and Larry had been planning this for days...and I was clueless. I can't explain how full my heart was with joy that I could have all of us together. Izzy and I cried together and shared lots of great hugs of celebration.
Kaylee got to take her sister's temperature and change a diaper. Yes, Kaydence gave her a poopy one to change too! lol. Larry and I were amazed at how calm and stabilized the baby was when Kaylee touched her. As soon as Kaylee touched her head...her saturation's and respiration went right where they should have been all day. We were elated to see them finally have the chance to bond. The nurse took her bili mask off her eyes during the diaper change, and Kaydence even gave her the pirate eye to check Kaylee out. It was so precious.
It was really hard to look at Kaydence today. My emotions are over-flowing because all the adrenaline is wearing off. I cried off and on all day, and it was very embarrassing. It didn't matter what it was, I would cry about it. I am even tearing up just typing about it right now...lol...oh my--the joys of hormones! Kaydence took at least 4 steps back since her little episode yesterday. She is completely limp and unresponsive. She won't hold our fingers and won't even wiggle her little toes today. Her breathing is what upsets us the most because she is extremely tipkitnic. Her ribs are moving up and down so fast that they look like they are stretchy rubber bands.
They had her incubator closed up and had a blanket over top of it all day. That was good for me so I didn't have to look at her like that. I would peak in every hour to let her know I was there, but I couldn't look at her too long. Larry didn't stay by her bedside much at all today...that is how he coped with her regression, and that's okay.
Update:
She now has jaundice, and was on bili lights all day
They think she got an infection from her relapse. (took her blood to test it)
They started her on antibiotics just in case it is an infection
Two more dirty diapers
Lots of sleeping today so she can heal her body
Unstable respiration and saturation's all day
**I got a huge surprise later in the evening that made my day all better! Larry peaks around the corner and tells me that he had a surprise for me...and around comes my baby girl Kaylee! I was in complete shock and apparently starting saying "that's my daughter!". I barely remember what happened for probably the first 10 minutes because I just couldn't believe that she was with me. Izzy, Todd, and Larry had been planning this for days...and I was clueless. I can't explain how full my heart was with joy that I could have all of us together. Izzy and I cried together and shared lots of great hugs of celebration.
Kaylee got to take her sister's temperature and change a diaper. Yes, Kaydence gave her a poopy one to change too! lol. Larry and I were amazed at how calm and stabilized the baby was when Kaylee touched her. As soon as Kaylee touched her head...her saturation's and respiration went right where they should have been all day. We were elated to see them finally have the chance to bond. The nurse took her bili mask off her eyes during the diaper change, and Kaydence even gave her the pirate eye to check Kaylee out. It was so precious.
Thursday, April 10, 2008
April 9, 2008 Regression Day
Hello everyone, Sorry for not posting the blog last night, Kaydence had a rough day. The day started great and we made it to the hospital for her rounds and the doctors said that she was doing great. It was good news! Then Larry got to hold her and I left the two of them to use the restroom. Within a few minutes, Kaydence "bradied" in his arms. (That is where her heart rate drops almost to stopping) Larry went in a panic and they had to call in the medical staff to bag her and try to get her heart going again. The bradying also caused her to d-sat, which means that her oxygen saturation dropped, so she wasn't getting enough oxygen. Larry tried everything to find me, but couldn't. The medical staff came running in and were working on her while Larry was looking for me. He actually walked right where I was but missed me because the restroom apparently said VACANT (we later realized that it was broken). I walked back in to see Kaydence just after the team stabilized her and had left. The nurse asked me if Larry had found me, and started to explain what had happened. I was just struck again by the news and didn't know how to react. Larry walked in shortly after the nurse was talking to me and I could see how shaken he was. I have never seen him like that, and I felt helpless on how to help him. I feel guilty that I wasn't there, but Larry was thankful that I wasn't.
They stabilized her and she was became very tipkitnic (breathing really fast). They had to give her another I.V. of glucose water to get some kcals in her. She was extremely tired and unresponsive to us. They said that the baby corrects themselves, it is just a matter of getting them to do it. Her coloration went to a yellowish tint because of all the toxins that her little body released trying to correct herself. She needed lots of rest, and time to recover from her traumatic episode.
We returned to Martinsburg to re-stock on clothes and supplies to get us through the week, and that trip turned out to be just a huge headache as well. We got into the driveway and saw water coming from the garage. Larry went into the garage and found that the outlet to our freezer had went bad and the freezer had thawed out. We salvaged what we could and Larry found another outlet that worked. While plugging it in to the other outlet, our deep fryer fell and we now have grease all over our garage!! Larry was so frustrated and started to loose his faith. He was so upset and told the garage how angry he was on the top of his lungs!! Needless to say, I did not go out there. I know that it was just a collection of the entire week on him, and today was the straw that broke his back. We had lumber that fell in the garage and hurt his shoulder as well. His blow-up made me a very emotional woman, and I could not control my tears. It took him about an hour after that, but he bounced back and was his normal loving self.
I am feeling the effects of my surgery and am in a lot of pain. Larry is still telling me I am doing too much, and I know that I have been working off of adrenaline the past 8 days. It is all starting to catch up to me, and I am slowing down and sitting more. I know that I am not going to get better if I don't slow down.
When we got back to the hospital, Larry got to help the nurse with the DIAPER CHANGE. It was the first time Larry EVER changed a diaper. Kaydence on cue, pooed all over the place when Larry was changing her (and it was the good first few poops with the maconium). So, not only was it the first diaper change for him, it was a poopy one. I think that that is just too funny of a story not to share with everyone.
Update:
Removed the drain from her leg from the surgery
Passed 3 more stools
Eyes open and more alert
She is swallowing and hoping to eat tomorrow
Coloration is still yellow
Her breathing is still abnormal
After the Bradie she is sleeping a lot and not moving much
At 2:30 a.m. we were sleeping and the phone rang...both of our heart's sank. It was a resident at the hospital and said that Kaydence had to have the breathing vent put back in. He said that she was working too hard to breathe on her own and that she still needed some assistance to breathe to relieve some stress on her little body.
We will continue to update. Please continue your prayers and thank you all for all of the support that our family is receiving in this time of need.
They stabilized her and she was became very tipkitnic (breathing really fast). They had to give her another I.V. of glucose water to get some kcals in her. She was extremely tired and unresponsive to us. They said that the baby corrects themselves, it is just a matter of getting them to do it. Her coloration went to a yellowish tint because of all the toxins that her little body released trying to correct herself. She needed lots of rest, and time to recover from her traumatic episode.
We returned to Martinsburg to re-stock on clothes and supplies to get us through the week, and that trip turned out to be just a huge headache as well. We got into the driveway and saw water coming from the garage. Larry went into the garage and found that the outlet to our freezer had went bad and the freezer had thawed out. We salvaged what we could and Larry found another outlet that worked. While plugging it in to the other outlet, our deep fryer fell and we now have grease all over our garage!! Larry was so frustrated and started to loose his faith. He was so upset and told the garage how angry he was on the top of his lungs!! Needless to say, I did not go out there. I know that it was just a collection of the entire week on him, and today was the straw that broke his back. We had lumber that fell in the garage and hurt his shoulder as well. His blow-up made me a very emotional woman, and I could not control my tears. It took him about an hour after that, but he bounced back and was his normal loving self.
I am feeling the effects of my surgery and am in a lot of pain. Larry is still telling me I am doing too much, and I know that I have been working off of adrenaline the past 8 days. It is all starting to catch up to me, and I am slowing down and sitting more. I know that I am not going to get better if I don't slow down.
When we got back to the hospital, Larry got to help the nurse with the DIAPER CHANGE. It was the first time Larry EVER changed a diaper. Kaydence on cue, pooed all over the place when Larry was changing her (and it was the good first few poops with the maconium). So, not only was it the first diaper change for him, it was a poopy one. I think that that is just too funny of a story not to share with everyone.
Update:
Removed the drain from her leg from the surgery
Passed 3 more stools
Eyes open and more alert
She is swallowing and hoping to eat tomorrow
Coloration is still yellow
Her breathing is still abnormal
After the Bradie she is sleeping a lot and not moving much
At 2:30 a.m. we were sleeping and the phone rang...both of our heart's sank. It was a resident at the hospital and said that Kaydence had to have the breathing vent put back in. He said that she was working too hard to breathe on her own and that she still needed some assistance to breathe to relieve some stress on her little body.
We will continue to update. Please continue your prayers and thank you all for all of the support that our family is receiving in this time of need.
Tuesday, April 8, 2008
April 8, 2008
WHAT A LONG DAY!!!
Last night, we begged the concierge manager to help us find a place to stay other than the Ronald McDonald house. I was way too stressed out, and still having a difficult road to recovery from the C-section. I needed to be alone, and definitely needed to have my own bathroom until things healed over a little more with my body. They spoke to another family, the Fortney family, and they allowed us to stay in a spare bedroom in an apartment that was being loaned out to them. A little awkward at first meeting a stranger and hopping in their car to an apartment we were sharing for the night, but we seemed to mesh very well together. We each had our own bedroom and separate bathrooms. I slept much better there than at the RMH, but Larry only got about two hours of sleep.
All of us got up and were at the hospital by 9 a.m. to be with our little girls. Their daughter was born at 27 weeks and she is 4 weeks old now weighing in at a little over 2 pounds. Kaydence was much more active today, and she even opened up one eye for us soon after we arrived. We were there for the walk-throughs with the NICU team, and they were able to provide some additional updates that we were not aware of.
Lots happened today...mostly good, but some bad as well. We took the bad news much better than we did with the news of her brain bleed yesterday. The cardiologist came over to talk to us around 2 p.m. and told us that Kaydence has a large hole in her heart. The hole is located between the top two ventricles and they refer to it as ASD. There are no medications they can administer to her, and she will probably need surgery when she is a year old. So, instead of crying my eyes out...I chose to look at all the positive things she was accomplishing. There is nothing we can do about this new condition, and we know that she is in God's hands.
Update:
She is completely off the ventilator
She opened up both of her eyes
She had the hiccups 6 times
She cried 4 times....even though you could barely hear her little voice
She passed a little tiny bit of meconium (her first poopy diaper)
They let me hold my baby for the first time!!!!!! Yes, I cried.....A LOT
They let me give her a bath. (sponge bath)
She started swallowing today
Very reactive to our voices and to camera flashes :)
Loves to hold her daddy's finger
**Today seemed like it went on forever. We left the hospital around 10:30 p.m. and she was still struggling to stay awake. Larry kept calling her a pirate because she liked to look at us with her left eye open. She got a lot of nicknames from us today: fuzzy bear, turtle, pirate, bubbles, old man, monkey, etc.
We are staying with the Fortneys for at least another few days. We have to see where Kaylee is going to go next week and how she will get to and from school. Everything has been falling into place for us, and we know it will continue to for our family.
Larry received several calls from the WV State Police Academy staff today which was nice for him and helped to relieve some of that from his stress ball he is carrying around. I want to personally thank them for all the support that the staff has shown to not only him but our family.
Keep praying for our little miracle. We know that she is changing so many people's lives. She amazes us on how her little life is touching so many others. We are grateful that God chose us as her parents.
Last night, we begged the concierge manager to help us find a place to stay other than the Ronald McDonald house. I was way too stressed out, and still having a difficult road to recovery from the C-section. I needed to be alone, and definitely needed to have my own bathroom until things healed over a little more with my body. They spoke to another family, the Fortney family, and they allowed us to stay in a spare bedroom in an apartment that was being loaned out to them. A little awkward at first meeting a stranger and hopping in their car to an apartment we were sharing for the night, but we seemed to mesh very well together. We each had our own bedroom and separate bathrooms. I slept much better there than at the RMH, but Larry only got about two hours of sleep.
All of us got up and were at the hospital by 9 a.m. to be with our little girls. Their daughter was born at 27 weeks and she is 4 weeks old now weighing in at a little over 2 pounds. Kaydence was much more active today, and she even opened up one eye for us soon after we arrived. We were there for the walk-throughs with the NICU team, and they were able to provide some additional updates that we were not aware of.
Lots happened today...mostly good, but some bad as well. We took the bad news much better than we did with the news of her brain bleed yesterday. The cardiologist came over to talk to us around 2 p.m. and told us that Kaydence has a large hole in her heart. The hole is located between the top two ventricles and they refer to it as ASD. There are no medications they can administer to her, and she will probably need surgery when she is a year old. So, instead of crying my eyes out...I chose to look at all the positive things she was accomplishing. There is nothing we can do about this new condition, and we know that she is in God's hands.
Update:
She is completely off the ventilator
She opened up both of her eyes
She had the hiccups 6 times
She cried 4 times....even though you could barely hear her little voice
She passed a little tiny bit of meconium (her first poopy diaper)
They let me hold my baby for the first time!!!!!! Yes, I cried.....A LOT
They let me give her a bath. (sponge bath)
She started swallowing today
Very reactive to our voices and to camera flashes :)
Loves to hold her daddy's finger
**Today seemed like it went on forever. We left the hospital around 10:30 p.m. and she was still struggling to stay awake. Larry kept calling her a pirate because she liked to look at us with her left eye open. She got a lot of nicknames from us today: fuzzy bear, turtle, pirate, bubbles, old man, monkey, etc.
We are staying with the Fortneys for at least another few days. We have to see where Kaylee is going to go next week and how she will get to and from school. Everything has been falling into place for us, and we know it will continue to for our family.
Larry received several calls from the WV State Police Academy staff today which was nice for him and helped to relieve some of that from his stress ball he is carrying around. I want to personally thank them for all the support that the staff has shown to not only him but our family.
Keep praying for our little miracle. We know that she is changing so many people's lives. She amazes us on how her little life is touching so many others. We are grateful that God chose us as her parents.
Monday, April 7, 2008
April 7, 2008
Today seemed like it would never end. Larry and I stayed at the Ronald McDonald house last night, and it was very difficult to feel at ease. I had a lot of difficulties just trying to sleep, and the bed was not comfortable at all with my sore body.
We got to Children's close to 11 a.m. and we stayed there until almost 10 p.m. I am now officially a walking zombie and I cannot remember what day it is anymore. Kaydence was still active with wiggling her fingers and toes, so she gave us a lot to smile about. She even opened up one eye, but only for a quick second.
Update:
She is completely off her morphine drip
They decreased her respiratory assistance
She still continues to have wet diapers
She is becoming more alert everyday
**We didn't leave her side all day, and yet every person that our nurse said would come to talk to us....never showed. I was falling asleep by her crib, in the breastpump room, and even on the freakin toilet! I wanted to stay until we could finally speak to someone. Well, that time came...and we are now at a loss for words.
The resident doctor came to her crib around 6 p.m. and asked us if we had any questions about her condition. So we asked the basic stuff, and she attempted to give us as many answers as she could. Then she broke the news to us that Kaydence had an ultrasound on her brain and they discovered that she has a grade 2 brain bleed. Our bodies went numb, and the room started to spin. I felt just as empty and helpless as I did on December 28th when we were told that Kaydence had a tumor and would probably die. We still have a lot of research to do on brain hemorrhaging, but it isn't good any way you look at it. Apparently, there are 4 different grades of bleeds: 4 being the worst, and 1 being the least harmful. No medication can heal or stop her brain from bleeding. Only time and God can heal her now, and all we can do is pray for the best outcome possible. They are saying that damage has probably already been done.
I did get to change her diaper for the first time today, and that was really special. Larry took some snap shots of her new and improved butt...so we will post those tomorrow for everyone to see.
We are extremely exhausted right now, and emotionally drained. I did not want to go back to the RMH because I need some alone time, and not share my life with a house full of strangers. The concierge manager organized a room for us to stay in for the night so I could be alone. We don't know where we will be from day to day right now...but that is okay, because we will be near Kaydence through the day hours.
Thanks for your prayers and all the support you are giving us. Also pray for our Kaylee-bug, she hurt herself at gym today and handled it like a big girl. She is staying with Izzy and Todd this week, and having a whole lot of fun. She even wore her new "I'm a Big Sister" shirt to school today. :)
We got to Children's close to 11 a.m. and we stayed there until almost 10 p.m. I am now officially a walking zombie and I cannot remember what day it is anymore. Kaydence was still active with wiggling her fingers and toes, so she gave us a lot to smile about. She even opened up one eye, but only for a quick second.
Update:
She is completely off her morphine drip
They decreased her respiratory assistance
She still continues to have wet diapers
She is becoming more alert everyday
**We didn't leave her side all day, and yet every person that our nurse said would come to talk to us....never showed. I was falling asleep by her crib, in the breastpump room, and even on the freakin toilet! I wanted to stay until we could finally speak to someone. Well, that time came...and we are now at a loss for words.
The resident doctor came to her crib around 6 p.m. and asked us if we had any questions about her condition. So we asked the basic stuff, and she attempted to give us as many answers as she could. Then she broke the news to us that Kaydence had an ultrasound on her brain and they discovered that she has a grade 2 brain bleed. Our bodies went numb, and the room started to spin. I felt just as empty and helpless as I did on December 28th when we were told that Kaydence had a tumor and would probably die. We still have a lot of research to do on brain hemorrhaging, but it isn't good any way you look at it. Apparently, there are 4 different grades of bleeds: 4 being the worst, and 1 being the least harmful. No medication can heal or stop her brain from bleeding. Only time and God can heal her now, and all we can do is pray for the best outcome possible. They are saying that damage has probably already been done.
I did get to change her diaper for the first time today, and that was really special. Larry took some snap shots of her new and improved butt...so we will post those tomorrow for everyone to see.
We are extremely exhausted right now, and emotionally drained. I did not want to go back to the RMH because I need some alone time, and not share my life with a house full of strangers. The concierge manager organized a room for us to stay in for the night so I could be alone. We don't know where we will be from day to day right now...but that is okay, because we will be near Kaydence through the day hours.
Thanks for your prayers and all the support you are giving us. Also pray for our Kaylee-bug, she hurt herself at gym today and handled it like a big girl. She is staying with Izzy and Todd this week, and having a whole lot of fun. She even wore her new "I'm a Big Sister" shirt to school today. :)
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