I can hardly believe it's been that long!
I didn't get a call on Thursday (12/23/11) from the NNP, so I just assumed there were no changes made to my baby. Usually I get a call if there are major changes made, and if it's just something minor...they just tell me when I get there....since I'm there everyday! When I got to the hospital on Thursday, I noticed that she was down to 3 liters of oxygen. I was really surprised because I thought we were going to wait because of how much she has been yo-yoing. She actually was doing really well on the 3 liters, her Fi02 hadn't really gone up much, she was still hanging out between 33-38%. I was glad that she was doing so well....and that we made some progress! Jessie was the nurse that night, she's so sweet.....I really like her! I was asking her a lot of questions.....I just wanted to know what changed to make them think she was ready to go down on her oxygen? I just keep hearing that we'll wein when she lets us know she's ready....so I just wanted to know how she let them know she was ready? She was still yo-yoing on her oxygen saturations, but she hadn't had a bradicardic episode for a couple days......so that's why they thought she was ready. Plus, we're not even sure it's the weining of the oxygen that's making her de-sat....or if it's just the acid reflux she's experiencing! All that really mattered was that she was doing well on the 3 liters. That was definitely progress! That day, they also up'd her feedings to 46ml every 3 hours....still over the 90 minutes....still with the same amount of fortifier, benaprotein and microlipids. Going down a little on her oxygen was awesome news.....because it meant a step closer to coming home!
Christmas eve was a crazy day! I was such a procrastinator this year and didn't even start shopping until pretty much Christmas Eve......crazy, I know! I took my 3 kids along with me to get the last minute things for the Christmas dinner because Ova wasn't feeling too good, so he stayed in bed all day :-(..... we stopped at McDonald's to get them something to eat, and while they were playing in the playplace, I got a call from the NNP. She was just giving me an update. We talked a little about baby Katea's acid reflux, and how she's been doing it more often. They decided to go ahead and start her on prevacid.....she said it doesn't cure the reflux, but it lowers the acid (pH) in the stomach, and hopefully that would help her. They were worried that the acidity of her reflux would cause her to have esophogitis, which is wearing down of the esophogus....so they were trying to prevent that. With the prevacid, they were hoping that it would not only help her reflux, but also help stabilize her yo-yo'ing and bradicardic episodes. They were going to start that day and try it for a few days to make sure it was working. If it wasn't making a difference, they would have to reasses and see what else they could give her. That was the only change that was made that day....and I really hoped it would work. Heartburn sucks! Stacey was back that night, on Christmas Eve and while I was there, she yo-yo'd a little bit, but not too severe. I just hung out with her for a little bit, and I left the hospital around 1030pm to hurry home because I hadn't started wrapping anything yet :-/
Christmas day was a wonderful day, but pretty crazy busy as well. I'm not gonna post about what we did Christmas day in this post, because it deserves a post of it's own, but baby Katea had a good day! She was spoiled and got lots of gifts, and Santa even visited her! I stopped by for an hour during the day, and then I went back again at night to spend some time with her. Ova has been sick...coughing and runny nose, so he couldn't go to the hospital to see her. He really wanted to, but it's just not safe to expose her to anything, because if she catches something and gets sick, it will be SO SO BAD for her poor little lungs. I know it's been really hard on him, and hopefully he'll start feeling better soon! Annica was working on Christmas morning.....and she told me baby was having a great day! Not too much yo-yo'ing on her saturations, which was great! When I came back at night, Meredith was her nurse. She wasn't having as great a time during the night as she did during the day. She had two pretty severe bradicardic episodes just while I was there....and they lasted pretty long and she needed a lot of help getting out of them. I hate seeing her have those....even though I don't freak out and panic publicly anymore, they still scare the heck out of me! Nothing had changed that day, she was still on 3 liters of oxygen and 46ml of milk every 3 hours. Stacey was working Christmas night, so she stopped by to say hi. She was happy to see that baby was on 3 liters, because the night before I guess after I left she had a really bad night and had to be turned back up to 3.5 liters. They turned her back down to 3 liters in the morning because they're thinking the issue is the reflux and not the weining of the oxygen....she's had pretty stable breathing patterns, not the periodic breathing which would indicate stress from the wein. I was glad she was at 3, but we just had to watch her closely and make sure she was tolerating it. She brady'd twice that night and yo-yo'd quite a bit. It was just something they needed to watch. The yo-yo'ing of her saturations, and the turning of the Fi02 up and down to chase her is affects the ROP in her eyes, so it's a very touchy subject. I got to do non-nutritive that night and just sat with her and held her for several hours.
Today, 12/26/2011, my baby girl is 3 months old! I can't believe it's been 3 months already....honestly the time has flown right by! I look at her and am amazed at how much she's grown and how much progress she's made. She was 1 lb. 12 oz. when she was born, last night when we weighed her, she weighed 6lbs.1oz. She's definitely growing! Her lungs are still struggling, but they've come so far. She shouldn't even have to use her lungs yet, because she's still 2 weeks away from her due date....but she's doing amazing! Everything we've asked her to do, she's doing.....or at least trying really hard, and I'm so proud of her! I got a call from the NNP this morning....she was letting me know that they up'd her feedings again to 48ml every 3 hours.....and they decided that because of the continued yo-yo'ing and her coughing and gagging....the prevacid wasn't really working. They decided to order an upper GI(gastro-intestinal) test.....which is a colonoscopy. Depending on the results of the GI test, they will do a swallow test....which is where they put dye in a nipple and have her swallow it to see if it goes to her stomach or if she is aspirating any of it into her lungs. They're not really sure what the problem is, but they're doing these test to rule out those as causes of increased respiratory distress. If she is aspirating, they'll have to put an NJ tube in......right now she has an NG tube. The difference is the NG goes to the stomach, and the NJ will go right into the intestine and bypass that stomach. If she has to get that, she will have it for 14 days while giving her esophagus time to heal from all the acid reflux. That 14 days will be continuous flow of food straight to her intestine...which means we would have to stop non-nutritive or really anything in the mouth. We don't know if there is something that is causing more severe respiratory distress, or if it really is just her lungs, and we need to be more patient. Tomorrow will tell! At the hospital tonight when I was with her, she was super duper sleepy all night. Even when I gave her a bath, she was so out of it. She didn't yo-yo nearly as much as she has been, but her Fi02 was a slight bit higher. I didn't get to do non-nutritive because she was so tired and she wouldn't have much control over her throat muscles....the last thing we want is for her to have an episode while doing non-nutritive, we don't want her to associate something negative with breastfeeding incase she develops an aversion to it. I left her tonight and she was sound asleep. I'm feeling really tired and worn-out....like I'm running on low. I just count my blessings for her everyday! With so many things that could go wrong, it really is a miracle that so many babies are born full-term and healthy with no problems at all. I've always been grateful to be a mom, but this whole experience with my baby Katea has really really opened my eyes and made me realize how lucky and blessed I really am. I'm grateful for the NICU staff, all of them....for all they do. I think I just need some sleep....re-charge my battery so I'm ready to be there for her tomorrow for her upper GI test. I love you baby Katea. Happy 3 month birthday!
I didn't get a call on Thursday (12/23/11) from the NNP, so I just assumed there were no changes made to my baby. Usually I get a call if there are major changes made, and if it's just something minor...they just tell me when I get there....since I'm there everyday! When I got to the hospital on Thursday, I noticed that she was down to 3 liters of oxygen. I was really surprised because I thought we were going to wait because of how much she has been yo-yoing. She actually was doing really well on the 3 liters, her Fi02 hadn't really gone up much, she was still hanging out between 33-38%. I was glad that she was doing so well....and that we made some progress! Jessie was the nurse that night, she's so sweet.....I really like her! I was asking her a lot of questions.....I just wanted to know what changed to make them think she was ready to go down on her oxygen? I just keep hearing that we'll wein when she lets us know she's ready....so I just wanted to know how she let them know she was ready? She was still yo-yoing on her oxygen saturations, but she hadn't had a bradicardic episode for a couple days......so that's why they thought she was ready. Plus, we're not even sure it's the weining of the oxygen that's making her de-sat....or if it's just the acid reflux she's experiencing! All that really mattered was that she was doing well on the 3 liters. That was definitely progress! That day, they also up'd her feedings to 46ml every 3 hours....still over the 90 minutes....still with the same amount of fortifier, benaprotein and microlipids. Going down a little on her oxygen was awesome news.....because it meant a step closer to coming home!
Christmas eve was a crazy day! I was such a procrastinator this year and didn't even start shopping until pretty much Christmas Eve......crazy, I know! I took my 3 kids along with me to get the last minute things for the Christmas dinner because Ova wasn't feeling too good, so he stayed in bed all day :-(..... we stopped at McDonald's to get them something to eat, and while they were playing in the playplace, I got a call from the NNP. She was just giving me an update. We talked a little about baby Katea's acid reflux, and how she's been doing it more often. They decided to go ahead and start her on prevacid.....she said it doesn't cure the reflux, but it lowers the acid (pH) in the stomach, and hopefully that would help her. They were worried that the acidity of her reflux would cause her to have esophogitis, which is wearing down of the esophogus....so they were trying to prevent that. With the prevacid, they were hoping that it would not only help her reflux, but also help stabilize her yo-yo'ing and bradicardic episodes. They were going to start that day and try it for a few days to make sure it was working. If it wasn't making a difference, they would have to reasses and see what else they could give her. That was the only change that was made that day....and I really hoped it would work. Heartburn sucks! Stacey was back that night, on Christmas Eve and while I was there, she yo-yo'd a little bit, but not too severe. I just hung out with her for a little bit, and I left the hospital around 1030pm to hurry home because I hadn't started wrapping anything yet :-/
Christmas day was a wonderful day, but pretty crazy busy as well. I'm not gonna post about what we did Christmas day in this post, because it deserves a post of it's own, but baby Katea had a good day! She was spoiled and got lots of gifts, and Santa even visited her! I stopped by for an hour during the day, and then I went back again at night to spend some time with her. Ova has been sick...coughing and runny nose, so he couldn't go to the hospital to see her. He really wanted to, but it's just not safe to expose her to anything, because if she catches something and gets sick, it will be SO SO BAD for her poor little lungs. I know it's been really hard on him, and hopefully he'll start feeling better soon! Annica was working on Christmas morning.....and she told me baby was having a great day! Not too much yo-yo'ing on her saturations, which was great! When I came back at night, Meredith was her nurse. She wasn't having as great a time during the night as she did during the day. She had two pretty severe bradicardic episodes just while I was there....and they lasted pretty long and she needed a lot of help getting out of them. I hate seeing her have those....even though I don't freak out and panic publicly anymore, they still scare the heck out of me! Nothing had changed that day, she was still on 3 liters of oxygen and 46ml of milk every 3 hours. Stacey was working Christmas night, so she stopped by to say hi. She was happy to see that baby was on 3 liters, because the night before I guess after I left she had a really bad night and had to be turned back up to 3.5 liters. They turned her back down to 3 liters in the morning because they're thinking the issue is the reflux and not the weining of the oxygen....she's had pretty stable breathing patterns, not the periodic breathing which would indicate stress from the wein. I was glad she was at 3, but we just had to watch her closely and make sure she was tolerating it. She brady'd twice that night and yo-yo'd quite a bit. It was just something they needed to watch. The yo-yo'ing of her saturations, and the turning of the Fi02 up and down to chase her is affects the ROP in her eyes, so it's a very touchy subject. I got to do non-nutritive that night and just sat with her and held her for several hours.
Today, 12/26/2011, my baby girl is 3 months old! I can't believe it's been 3 months already....honestly the time has flown right by! I look at her and am amazed at how much she's grown and how much progress she's made. She was 1 lb. 12 oz. when she was born, last night when we weighed her, she weighed 6lbs.1oz. She's definitely growing! Her lungs are still struggling, but they've come so far. She shouldn't even have to use her lungs yet, because she's still 2 weeks away from her due date....but she's doing amazing! Everything we've asked her to do, she's doing.....or at least trying really hard, and I'm so proud of her! I got a call from the NNP this morning....she was letting me know that they up'd her feedings again to 48ml every 3 hours.....and they decided that because of the continued yo-yo'ing and her coughing and gagging....the prevacid wasn't really working. They decided to order an upper GI(gastro-intestinal) test.....which is a colonoscopy. Depending on the results of the GI test, they will do a swallow test....which is where they put dye in a nipple and have her swallow it to see if it goes to her stomach or if she is aspirating any of it into her lungs. They're not really sure what the problem is, but they're doing these test to rule out those as causes of increased respiratory distress. If she is aspirating, they'll have to put an NJ tube in......right now she has an NG tube. The difference is the NG goes to the stomach, and the NJ will go right into the intestine and bypass that stomach. If she has to get that, she will have it for 14 days while giving her esophagus time to heal from all the acid reflux. That 14 days will be continuous flow of food straight to her intestine...which means we would have to stop non-nutritive or really anything in the mouth. We don't know if there is something that is causing more severe respiratory distress, or if it really is just her lungs, and we need to be more patient. Tomorrow will tell! At the hospital tonight when I was with her, she was super duper sleepy all night. Even when I gave her a bath, she was so out of it. She didn't yo-yo nearly as much as she has been, but her Fi02 was a slight bit higher. I didn't get to do non-nutritive because she was so tired and she wouldn't have much control over her throat muscles....the last thing we want is for her to have an episode while doing non-nutritive, we don't want her to associate something negative with breastfeeding incase she develops an aversion to it. I left her tonight and she was sound asleep. I'm feeling really tired and worn-out....like I'm running on low. I just count my blessings for her everyday! With so many things that could go wrong, it really is a miracle that so many babies are born full-term and healthy with no problems at all. I've always been grateful to be a mom, but this whole experience with my baby Katea has really really opened my eyes and made me realize how lucky and blessed I really am. I'm grateful for the NICU staff, all of them....for all they do. I think I just need some sleep....re-charge my battery so I'm ready to be there for her tomorrow for her upper GI test. I love you baby Katea. Happy 3 month birthday!
No comments:
Post a Comment