Update 6

Sunday March 7th- We started our 12 hour day feeding this morning. It started off great with a 70, that is over what he needs for his feeding! He had a good feeding after that, but they kind of went down hill after that. He technically passed, but barely. They are going to go ahead and take the steps to get him home! They set up his MRI that he needs to have before he leaves for tomorrow. We are going to let him rest for 12 hours tonight and take it easy on the feedings tomorrow.
Monday March 8th-I went in really early to get a couple of feedings in before his MRI. Not good numbers, but the nurse said not to push him. Just give him some loves, since he was having his test today. I got home and the doctor called me and said they wanted to wait on the MRI. They need it as close to when he would be 40 weeks as possible. They want to try another 12 hour request feeding tomorrow. They also go the echo he needs before he leaves scheduled for Wednesday.
Tuesday March 9th-The 12 hour feeding request did not go good. His numbers were not great in the morning. He did have one really big feeding at night. But both the doctor and the occupational therapist do not think he is ready to move onto a 24 hour request with his feedings. The doctor also wanted to prepare us for the idea that he may need to go home on a feeding tube. They want to take tomorrow off and then try one more 12 hour on Thursday. His numbers are just not consistent. He needs to be getting about 68 and he is usually in the 30-40's.
Wednesday March 10th-His feedings went okay again today. The cardiologist did come to do his echo tonight and it's a miracle! His pulmonary hypertension is gone!! We were all so shocked, even the cardiologist! We are very lucky because it is something that can take years to get rid of, or can become a chronic problem. They are going to keep him on the medication though, the flap (ASD) is still very open and they don't' want too much fluid to get in and make his lung congested since they are already so fragile. They can go ahead and start weaning him off the oxygen! We thought he would be on oxygen for months! He has to see the cardiologist in one month. She said the heart defect should not affect him and could take 4-5 years to close.
Thursday March 11th-I got there to start his 12 hour day again and the doctor sat me down to talk to me about everything. She feels like it is just stressing him out when we do the 12 hour days. He is loosing weight from the stress and because he is not getting enough. They feel like it might be the best idea to just send him home on a feeding tube and see if he can pick it up at home. They called our pediatrician and went over EVERYTHING with him, they also wanted to make sure he was okay with him going home on a feeding tube. They all agree that they feel like he might do better at home, with some consistency and a loving environment. The Doctor for the day also got us into the Premie follow up clinic. It is a clinic that has every kind of specialized pediatrician in one stop. You go and are there for 4 hours and you see each and every specialist. We are incredibly lucky to have gotten him in, he is technically too big and does not fit the requirements. They also trained me today on how to put a feeding tube in, one of the worst experiences of my life. I am wishing I would have gone to nursing school! They got his MRI set up for tomorrow. They are going to get everything taken care of so we can go home on Monday.
Friday March 12th-Came in for the morning feeding, he had his MRI this afternoon. It wen well. We did get the result from Primary Children's Neurologist as well. His white matter is not where it is suppose to be for his gestational age. It is still a little premature. The white area that goes around his nerves in his brain is the wrong color. They don't think that the cells are dead which is good, but it is still behind. He should be fine with time and they believe it should catch up. He still could have some issues and there still could be something wrong. They want us to repeat the MRI in 3-6 months so they have a better idea. So it could be nothing, but it could also be a really big something. Time will only tell. The doctor today wanted to try one last shot at getting him home not on a feeding tube. She wants to try giving a few bottles, with lots of calories in them to see if that helps. They are also going to pull out his feeding tube to see if that helps him eat better because of the acid reflux. This is his one last shot before he comes home.
Saturday March 13th- He passed his breathing car seat test last night (They have to monitor them while they are in their car seat for 1 1/2 hours, to make sure they can breath okay while sitting upright). They started the morning feeding with a bottle. Not a great number. I tried the next feeding and got a 20. I was heartbroken and very emotional. This was it, it was our last try to get him home with out a feeding tube. His numbers are all over the place and we all feel like the only way to know how much he is getting is with a feeding tube. Basically our nursery will be set up like a hospital room. We are even getting a paediatric scale so I can weigh him before and after he breastfeeds to see how much he is getting. They want me to only breastfeed 4 times a day, all the other straight from the tube. Kyle came today to learn how to do the feeding tube as well. One of the doctors that has seen McKay before is a geneticist. She wanted to look one more time into seeing if all of his abnormalities link together. There is a syndrome that she found that she wants to look into a little more.
Sunday March 14th-We spent the day going over everything with the nurse today to get him ready to discharge. It is a lot. I admit I got incredibly overwhelmed and scared. I am not sure how I am going to do this, how I am going to care for him like a nurse would. So many things could go wrong.
He is coming home on oxygen, but not very much. So we also learned how to deal with the oxygen. If they go home on oxygen then they have to be hooked up to a heart monitor. So we also learned how to deal with it as well.
We also met with the doctor that was the geneticist again to go over the syndrome. She thinks there is a good possibility that McKay and actually Kyle have this syndrome. There are a lot of things that both McKay and Kyle have. It is incredibly rare if it is what they have. She wants us to go see a geneticist up at Primary's children's to see what he says. It does feel kind of good to possibly have something that links this all together though. It still may not even be it, but possibly.
I am spending the night at the hospital tonight with McKay. They put you and the baby in a room and it's just you guys for the night. They have to make sure you can do everything by yourself. The feedings, the weighing's, the medication, the oxygen, and the heart monitor. I would be lying if I didn't say I was really nervous and scared.