Mighty Matthew is three weeks old! It is so fun to finally feel like I know him. I know he likes to be held upright on my chest. I know he does not like being forced to wake up by the nurses. He loves looking at the mobile over his crib. He can get very mad very fast, but usually goes back to happy just as quickly. Overall, I would say he is a pretty happy baby. I absolutely can not wait to get him out of this hospital and be able to have our own routine.
His goals for last week were to work on bottles and wean his oxygen. His oxygen got turned down to .1L on 100%, which is the lowest setting before taking it off. They will try a room air test, meaning no oxygen, when he gets closer to going home. He may come home with oxygen depending on how he does. At this point, breathing is not a barrier to us taking him home. He has had no breathing problems at all over the last week, which is amazing for a CDH baby.
As far as bottles go, that has been a struggle. He is offered a bottle every three hours with 56mL of milk in it. When he started he would only take about 10mL before getting too worn out or angry. Over the weekend, he is up to taking around 40-48mL on a good feeding, and in the 20s when he is tired or irritable. He is making progress, it just seems so slow. Getting so close, but not consistent, is frustrating. I want him home SO bad, and to know that this is the only thing standing in our way makes it even more frustrating. I feel like something clicked with him on Sunday and he is figuring out that eating isn't so bad. Hopefully I am right and he is downing bottles consistently by the end of this week.
The past week has undoubtedly been the hardest on me. The first two weeks were filled with adrenaline and so much progress that it kept my spirits up, even though it was a rollercoaster ride. The last week has been slow progress, and my energy levels are tapering out. It was also the big boys' last week of school. I missed Ben's kindergarten graduation. I couldn't be the fun Mom with something fun planned on the last day of school. Instead, my sweet boys got in the car and drove four hours to see me and Matthew in Kansas City. They got last day of school snuggles with their baby brother and didn't complain one time. Knowing it is summer time and we aren't getting to do all the fun summer things is hard.
I miss home. I miss tucking my kids in every night. I miss doing anything normal. When I am at the hospital everything revolves around feedings and pumping and his hospital schedule. When I leave the hospital, I spend the entire time feeling guilty that I am not there. Is he crying and I am not there to hold him? Is he taking his bottle as well for a nurse as he would for me? I know it is not physically possible for me to be at the hospital 24 hours a day, but it kills me to not be with him. And when the big boys are here then I feel guilty no matter where I am. I want to be with all five of them all the time and it just isn't possible. The little moments of all seven of us together are very fleeting, but they make me so happy.
Matthew got a room upgrade over the weekend. His old "room" was in a very busy part of the NICU with curtains as walls. It was loud, busy and there was no privacy at all. His new room has a big window and three walls! It is much larger, quieter and more private. I can't tell you how excited I was to have natural light! I set my camera in the windowsill for a family picture just to celebrate. I love that you can't really even tell we are in a hospital. I just hope they aren't planning on us staying in this room for too much longer.
The only goal for this week is to keep working on bottles. Once he gets that down we will be running out the door as soon as they will let us. I had set my mental goal for leaving this Friday, but I don't think that is realistic at this point. I need to switch gears and hope for some time next week. Our lease is up on our house on June 16, but we are hoping to be home before then.
A few other health notes about Matthew: He has good muscle tone! Babies with Down syndrome typically have low muscle tone. We have had several different people tell us that Matthew has great tone. We were so happy to hear this, because we need him to be strong! He will have to sit in his carseat for four hours before we can go home, and good muscle tone will hopefully help him to pass that test! He had a follow-up echo cardiogram today and his heart is looking good. We are SO thankful for a healthy heart. This little guy has been through so much, and avoiding heart problems is a huge victory for any Down syndrome baby. We also got the results from his genetic testing. He has Trisomy 21 (Down syndrome) with no other known genetic problems. This was also great news! They also told me that he is a boy- I thought it was funny that they clarified that while giving me the summary. His hair has been a big topic of discussion. It looked brown at the beginning, but we may see a little bit of red coming through. He just wants to keep us all guessing!
I have been in Kansas City for six weeks now. I am so ready to bring this baby home. Please continue to pray for Matthew! We have been so touched by everyone who has called, emailed, sent a meal or a gift, and said prayers. We are surrounded by the most amazing people! We can't wait for ALL of you to meet Matthew!
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