Day 67

Parker is always keeping us on our toes! His nasal cannula flow was turned down this morning to 0.5L and he did well until the afternoon. Then he decided to desat quite a few times. Scary desats too! So up on the flow we went. Desat again towards the change of shift. Praying that he does well through the night. No plans for surgery right now. His doctor wants him to grow some more. So we will wait and watch him grow. It's always a challenge with this kid. But we love him so do much!!

Day 66

Parker had a good day today. Had a lovely enema X-ray. I was able to go in with him. Poor kid, not fun having stuff shoved in places it shouldn't. What a mess it was to clean up this afternoon! Needless to say, he got a good bath! Thankfully the X-rays look well, so now we jut wait to hear when surgery will be. We still haven't heard from the surgeon yet. Parker's nasal cannula flow has been turned down to 1L and he continues to do well with that. Sometimes he decides to hold his breath and desat, but he always recovers on his own. He just needs a little reminder to breathe. We enjoy holding him as much as we possibly can! Such a sweet boy!

Day 65

Another nice day for Parker. He had lots of visitors spending time with him. I got to give him a really good bath today too. He actually didn't mind it too much. He loves it when we sit him in his little tub of water. Tomorrow he has a test to look at his intestines before we plan surgery. Hopefully everything will be ready to go. Everything else remains the same right now. Just waiting for surgery.

Day 64

Parker had a good day today. The only time he was in his crib was when we did his cares, and when we went to lunch. He's just so snuggly, we didn't want to put him down! The nurse this morning said that he took a full 30cc of his bottle. Such a champ! But because his ostomy has been putting out a lot of diarrhea, he's back to his continuous feeds at 10cc/hr. And he gets Imodium to help as well. John talked to the surgeon, and there's talk about him having his surgery next week to reconnect the small and large intestine. I'm a little nervous about surgery again, but he needs this and we know he'll do well. His lungs are getting stronger. He is off the high flow nasal cannula and on regular nasal cannula at 1.5L. Hopefully we can continue to strengthen his lungs before surgery. Glad for the good days he's been having.

Day 63

Parker did really well today. Got a lot of good snuggle time and sleep. Got his immunizations today, so hopefully he will do well with those. Had a follow up eye exam today. Unfortunately his retinopathy of prematurity (which is abnormal blood vessel development in the retina) has progressed to stage 2 (stage 5 is the worst). So they will continue with weekly eye exams and be sure that it doesn't progress any further. He always is faced with challenges, but seems to overcome them! His nasal cannula was turned down to 2L this evening and he's doing well with that. Feeds are now 35cc over 2 hours and he is tolerating it just fine. We love watching his facial expressions and we have taken so many pictures of our little man. I don't think there's an album large enough to hold all the pictures we have taken of him!

Day 62

Parker had a great milestone today! He got to take a bottle for the first time! He did really well. He drank 8cc before he started to fall asleep. His feeds have been consolidated. He gets 35cc over 2 hours, then an hour off. Still doing well on his high flow nasal cannula. He continues to progress.

Day 61

I can't believe my little man is 2 months old! He has come so, so far. He has been doing really well the past few days. Very proud of all the progress he's made. He's still doing well on his 3L through his high flow nasal cannula. Had his feeds turned down to 10cc/hr because he has had so much diarrhea from his meds. Had a major blow out today. Oh what fun it is to clean that up. Good thing I had John to help me. Gotta love co parenting! Parker and I got to do some kangaroo care (that's skin to skin holding). Sweet precious moments I will always remember!