Hi! I've been meaning to update for a couple of days, but honestly, between visiting Bodie in the NICU, pumping every 3 hours, recovering from major abdominal surgery and passing out pretty often from the Percoset, I just haven't found the time that I expected to have! So, sorry for the late update.
Bodie is doing great and holding his own, which we're thrilled about. They initially had a hard time getting a central line which was a huge concern, but finally got one in successfully Wednesday night, thank God! Right before inserting the line, they sedated Bodie and he ended up de-satting (his oxygyn saturation level dropped), bradying (his heart rate dropped) and having an apnic episode (he stopped breathing), all as a result of the sedation. I was there when it happened and even though I knew it couldn't be as serious as it felt since the doctors weren't completely freaking out, they were aggressively trying to get him back breathing and what-not and it was pretty traumatic for me. Lucikly, he has not had any episodes since then and the doctors have assured me that those are common reactions both to the medication he's on and sedation.
Due to the his condition and the fact that they are drawing blood every 6 hours or so, he became anemic and needed a blood tranfusion yesterday and will have another one this morning. He did great with the one yesterday and they don't expect problems with the one this morning - he's really cute and pink now! It's neat to see!
All of his tests so far have come back completely normal, including the brain scan! Praise God for that! His echos are showing that he's stable and that his PDA is staying nice, big and open (which means the medication is doing exactly what they want it to), so we're thrilled about that. One doctor, after looking at his chart, said "he's the perfect candidate for the surgery!" (made a mama's heart sing, that's for sure). They're doing a renal scan this morning, but since his urine output has been great, they don't expect to see any surprises. His genetic test results have not come back yet, but the neonatologist told me that with boys who are born with HLHS, if there is no visual indication of a chromosomal abnormality, a genetic caryotyping isn't even the protocol since it's so unlikely that anything chromosomal is going on. Again, PRAISE GOD!!!
I have gotten SO MUCH more time with him, it's been amazing. Although I haven't been able to hold him yet (they don't want to risk disturbing any of his lines), they've really increased my access to him, allowing me to sit and stroke his head and basically any part of his body not covered by a line or tube! His nurse yesterday let me help change his diaper and taked his temperature twice, which was so wonderful! Oh, and I got to see his eyes yesterday! Usually the little guy is sleeping, so I hadn't seen them yet. But when I went in yesterday morning and pulled the blanket on the top of the incubator back, he was staring right up at me! I don't know who was more surprised - me, to see his eyes, or him, since I'm sure he had no idea who I was! It was so neat...hard to tell what color his eyes are, but his hair is definitely strawberry blonde-ish...and yes, he looks Sierra! I can't wait to get home and compare baby pics of the two of them.
Speaking of which, I'm getting released today (I stayed until the insurance company kicked me out!). I'm sad to leave Bodie since we don't know yet whether he'll be transferred today or tomorrow. But it will be nice to spend some time with Sierra today and tomorrow - and sleep in my own bed for a couple of nights before we head over to Children's for an indeterminate amount of time.
Please pray for Bodie as we head into the weekend and into next week. This week has been surprisingly smooth and easy (all because of the amazing prayer warriors we have hard at work praying for him, I know), but we are preparing ourselves for a really difficult week next week. Please just pray for our little fighter - pray for his little body, that he responds well to the surgery and pray for the surgeons, that they have the wisdom to do the best job they can. And pray for Dusk and I, that we can stay calm and just trust God with our beautiful little boy next week. :-)
I will update as soon as we know more (including when he gets transferred). In the meantime, thank you for all of your kind thoughts, prayers, blood and platelet donations (we've been totally overwhelmed by your response to our request for help with that!!!)! Asnd here are a few new pics of our little fighter...