Tuesday Everett really slowed down with his eating, I asked the nurse to put his tube back in his nose so he didn't have to fight so hard for his meals. He was becoming quite averted and had a hard time coming down and organizing himself in order to eat. He is arching really bad, probably from being intubated for so long and working the wrong muscles every time he was poked and prodded. His nose has become really congested, they think it could be acid reflux or just milk going into his nose when he is trying to swallow. I guess that is common.
We started working with a physical therapist to correct his arching. She has taught me lots of wonderful positions to put him in that are already changing his muscles and habits in less than 24 hours. I wish I would've known all of these things for Clara, there are so many easy ways to tell if your babies are working on their muscles or not. With consistency, I can see him succeeding with all muscles very soon.
After putting the tube in his nose it was clear he was going to need help with eating in order for us to get out of here. I was just so surprised since he did so well the first 24 hours. Her speech therapist came and tried to feed him, she saw everything I saw and was glad I asked for his tube to be put back so he could take a break. Our neonatologist came back and agreed that we would schedule his surgery to get the G tube put in. It was a really rough day knowing that we needed it for sure.
Yesterday, the speech pathologist asked if she could try formula again to see how he does. She had asked me this about a week and a half ago and the doctors backed her off from trying it. Even though I don't want him drinking formula, I do want to see if it helps him in anyway. He drank the formula very calm and very successfully. There is no thickener for breastmilk, and he may be aspirating the breastmilk. Even if he is not aspirating, it is clear that it is too thin for him to drink easily. One of our options is to do an OPMS, the swallow study, that which will tell us how he is swallowing, if he is refluxing, and if he is aspirating. The downside to doing the study is that if he is having any trouble, formula is our only answer for now.
I asked the doctor yesterday if she thought that putting in a G-tube in him so he can get breast milk is more important than having him drink formula, and she felt very strongly about the G-tube and breast milk. She said the benefits of breastmilk outweigh formula tenfold. So, as helpful as the swallow study would be, it is almost like we don't want to know the answer since we may not want to face having to feed him formula. So then the question would be, do we put in a G-tube anyway so that he can continue to get the benefits of breast milk and orally eat some formula. It is a lot of pressure on me to make this decision for him, not really knowing which one is best. If I knew that he would only need to drink formula for a few weeks until his muscles were strong enough to become strong enough to coordinate drinking breastmilk without issue. Usually after they do the swallow study, you wait for three months until they do another swallow study to see where he is at. I really don't want him drinking formula for three months, breastmilk will help his immunity, brain development, and much more. If we did not do the swallow study, so that we did not get the answer and had to go down the formula path, I could have the speech therapist work with us at home on getting him to slowly work at drinking breastmilk under her supervision, the problem is we would never really know if he is aspirating since babies can do that silently.
I am waiting for rounds right now, and I hope to get a lot of answers and direction then. I am pretty sure the doctor is going to want us to do the swallow study so that there is no chance of him aspirating.
As of right now, he has an appointment Monday morning to get the G-tube put in. However, if he successfully drinks formula until then we may not need it. The only catch is he would be drinking formula, and I would not really know for how long. I would continue to pump and freeze my milk for him, but I don't know how comfortable I am with him being off breastmilk for an unknown amount of time. This weekend will help us determine if he needs a tube or not, if he doesn't, I guess we will have to just weigh our options and make that decision then.
The most amazing news is Everett continues to be a constant fighter. When things are uncomfortable and rough for him he does not give up, I have never seen anything like it. He has so many reasons not to trust, and he continues to try and try again. The cards are continuously stacked against him, but it only slows him down, it won't stop him. He wants to eat so bad, it breaks my heart. All of the nurses and doctors are constantly impressed with his abilities and determination. I am so proud of him, my little tiger!
The physical therapist also said he is breathing with the top of his lungs, the part that we breethe with when we are exercising, he is not using the lower lung which is why he used to struggle and sometimes still does with endurance. Getting him to strengthen other muscles will allow him to breathe normally which will impact every aspect of his life, particularly eating. Just in simple positioning, she could get him to breathe with a different part of his lungs. He has found ways around every wall that has been put up in front of him, now we just need to correct some of them to even out the strength of all of his muscles.
No comments:
Post a Comment