Doesn't she look like a scuba diver?
Well, after a good night last night, they decided to put her back on the bubble CPAP this morning. I spoke to the Doctor in depth about how they decided when it was time to switch from the vent to the CPAP to the Nasal Cannula, especially when our main goal is for her to rest and focus on growing. He said that Kayleigh will not burn enough calories to make a difference if she has the apnea episodes, even when it appears she is not getting sleep and wearing herself out. The most important thing for her to grow is the amount of feeds she will be getting as long as she can tolerate it. So the reason she wasn't growing was not because she wasn't getting enough sleep, it was because she wasn't getting enough food.
The good news about her feeds is that yesterday they increased her feeds from 2 to 3ml and today, they are increasing it to 4ml. So she will get that much every 3 hours. That will help her grow. They are just going to keep an eye on Kayleigh and make sure she can tolerate that amount of increase or it could cause back up and cause infections. They don't want to give too much too soon. So with speaking to the Doctor, it cleared up my worries about whether or not her breathing assistance is going to affect her growth.
Overall, her day is going great so far. She was doing well on her breathing and not having any issues with desats. Being that the bubble CPAP is almost too big for her, it kept falling out of position, so it caused Kayleigh to not get the oxygen she needed. Her sats would drop, but then her heart rate wouldn't, so we knew right then and there it was out of position. They had to wrap it around her head and even put a beenie on to strap it in place. The picture almost like she is uncomfortable, but she is doing just fine. They had to get a smaller beenie because the one you see in the photo was too big and it almost covered her eyes completely.
The funny part of the day was when I changed her diaper. She had peed in her diaper, but there were only small small smears of poop. As I changed the diaper and wiped her butt with the wet cloth, I must have triggered her bowels because she had an explosive blow out. She almost squirted me in the process. It was so funny, I was almost in need of a changing too. So we threw on a new diaper quickly so she can finish her business.
Aimee is also doing a great job. This morning, she had the most milk she produced so far. It covered the bottom of her little cup about a half of an inch deep. That is a major improvement. She was so blessed to have met someone on the message board who sent her some Domperidone at no charge to help out and it seems to be working. We are so greatful because to order it, it would have taken a couple weeks and we didn't have time to wait. Kayleigh needs this liquid gold as quick as possible if we need her to grow and now Aimee is producing enough to make that happen. It is amazing how God makes everything work so perfectly. We are so proud of Aimee!!!
We are happy that today was another good day. I know that my posts always seem cheery, but I am really good at hiding my emotions. To be honest with you all, this is the most stressful situation I have ever been in during my entire life. It is so hard to see your child, who you can barely touch because you are afraid to disrupt her, let alone hold her in your arms like a newborn baby should be held. I am very impatient as I want her home with me NOW!!! I am so afraid to go in the NICU to find out bad news that she is not doing well or she may not even make it. The rollercoaster is the hardest part. One day she could be absolutely fine and the next day she could be fighting for her life. It is so hard playing this waiting game and balancing act of medicine. The events that have happened over the past 14 weeks with ALL the ups and downs of her "not going to survive" to "Holy crap, she made it" has really played a toll on me. You just wonder and ask God everyday, "What is the purpose of this and how is going insane going to help me help others." It has gotten to a point where I have been getting angry over the littliest things. I am sure that there are a lot of NICU Dads out there that try to act strong for their family, but are breaking down inside. Please, either tell me to suck it up or what I can do to help make things easier on my end.
I wish you all a wonderful weekend and God Bless!