After our scare yesterday we decided to try and maximize our time with James today. We wanted to get in extra cuddles, and just been there with him. We've been doing that anyway but decided instead of going home for dinner we'd pack our sandwiches to take with us this time.
Rounds seemed more positive this time around. Turns out his hemoglobin and platelet counts were finally coming up (he was boarder line in need of another transfusion), and because the neck ultrasound was still showing clots in his right internal jugular they decided to up his does of heparin to try and break down those clots. His chylothorax was finally down as well, but they told us that until it was a consistent downward trend over several we shouldn't get too excited. The chyle fluid is our other barrier keeping him from eating at this point. BUT because he was off of the antibiotics for necrotizing, and his bowls were showing signs of function again (he's farting audibly - Papa John will be so proud. He's a true Burns) they were going to try Oral Immunotherapy for the first time. That is, taking a few drops of my milk (.2oz) and giving it to him, applied on the tip of his soother.He can only have that tiny little dose every 6 hours to see how his intestines react, but this was a huge step for us. They ended up giving him his first dose while we were at home for lunch unfortunately, but the bedside nurse said he absolutely loved it!
When we got back to the hospital James was asleep in his bed so we decided not to move him and just let him rest. Chris and I love doing crossword puzzles together, and a couple months ago when our finances were exceptionally tight we would go to Starbucks, buy one specialty drink to share, and doing crosswords together as our date night. I know it's lame, but we enjoy it and the time we spent together, and it was all we could afford at that time. Now, we bring the crossword book with us to the hospital and do puzzles together all day. We bought a big book of the Monday puzzles from the New York Times (they're supposed to be the "easy" ones lol) and it's been great. It keeps us off our phones, and allows baby to hear our voices, doing something he would have heard us do in the womb anyway.
Part way through the afternoon, while James was still resting, our bedside nurse brought us to the back of our unit to show us this bead station. It's a necklace, or a strand, of beads that you put together to create a picture of your baby's life story. He's only 11 days old, but my goodness has he done a lot! Each bead represents something that has happened to him, from admission, to surgery, to tests, to intubation, and everything thing in between. You start by spelling out their name and then go through chronologically adding beads to create a representation of what they've gone through. Of course we didn't actually take one bead for every since time he was poked, or taken on/off oxygen, but we got the larger milestones put together. It was kind of neat because this way we can show it to him when he's older and explain things to him, but it also will help us remember what happened and when in short form, rather than going back and reading it all in the blogs.
We also picked up a few colouring books for James when he's older that explain some of the procedures he's had and some he will continue to have his whole life (echocardiograms, EKG's, X-Ray's, etc.). And once we get home and things begin to settle down I'm going to work on creating our own special baby book. Normally a baby book has all the firsts, like first smile, first lock of hair, first guests, etc., but since James has had such a unique start to life I'm going to include all my blog posts, all the messages of support and prayers from Facebook, comments, messages, emails, and texts, and then some of the normal firsts as well. I want this for me as much as I want it for him. We've all grown so much through this whole experience, and I don't want to forget.
Settling In
When we got back to the unit James was finally settled but awake! So after our bedside nurse debriefed the next shift Chris finally got to have his cuddles. It was super funny to watch because James had a bad case of the hiccups and was peeing like crazy because of the lasix (diuretic) they had him on. We were changing his diaper every 30 minutes it seemed! One time he peed so much his entire bed and all his blankets were soaked! I guess this means I really do need to buy a mattress cover and an extra fitted sheet when I get home! But my goodness, the faces James was making while looking at Chris, hiccuping, and rooting around for more milk (since he finally got a taste of it)... it was priceless. We even had him practice tracking by getting him to follow his monkey. A couple times it made him go cross eyed and we were crying we were laughing so hard! It was just the cutest thing.
Once we were back at the hotel for evening we decided to finally log in to the Netflix account we got for Christmas. We'd heard about House of Cards from a bunch of our friends so we decided to watch an episode before bed. It was pretty good! But the weird thing I discovered was while we were getting ready for bed. I took my makeup off and my face was all red and splotchy! Of course this made me freak out, but then I did some research and it looks like it's just a hormonal side effect of being postpartum and should go away in a few weeks. Until then I won't be going anywhere with a naked face because I look ridiculous.