Thursday 2/1 night update

Gideon had a good day today. He trained with his first ever bottle. *sob* mama missed it. But Bo said he did great, he took 10 ml by bottle and they are going to continue bottle feeding him 10 ml 3x per day and see how he does. This is very exciting! Hopefully he will start getting fat soon!   :)

He tends to be very serious and thinks a lot. It’s a wonder what’s going on inside that mind of his. But look at his sternotomy scar, it’s almost all healed up! That’s just super glue on top of it, they put that on it when they close him up and that’s all they put on. I’ll of course oil it when the superglue is all gone but for now, he gets whatever they give him :)
Eating is hard work …. makes for a tired baby. LOL. Maybe I’ll get an updated weight on him tomorrow and see if he’s gaining with all that he’s been eating. He is down to 2L in his positive pressure cannula (it’s different than just a nasal cannula like I’m used to being an EMT, I didn’t know that originally) so that’s been cut in half and he is doing well. His Milrinone that we need him to get off of was reduced again tonight so we pray that the continued weaning of that goes well throughout the night and he remains stable. Apparently he just did a big poop again, he really does need to get bigger diapers so he stops blowing them all out. He is still a tiny guy but he is certainly too big for preemie diapers already. Who knows, maybe he will be big enough for newborn clothes this week! Not that he is allowed to wear clothes yet becuase he has too many tubes and wires coming out of him but soon enough!

I feel like this picture below gives a good perspective of his size. That’s Bo’s hand feeding him from a small bottle and his tiny little head on his 5 lb body. He is still really little even though the pictures I show make him look like a normal size baby, he isn’t quite there yet. Soon enough!

As for mama, I’ve had a rough day. I spent most of the day crying for the 3 babies who have been lost in our hallway in a week. I was down about the surgery for the boy down the hall too, not feeling very optomistic about that either and was so relieved to hear that so far, it seems to be a success. I’ll keep  praying for a miracle for him, it’s so hard to pray for because the only thing that will save his life is a heart transplant, but how do you pray that a heart becomes availble for him? Such a hard prayer to pray… But God has a plan and I don’t understand it, I just have to trust Him and share my cares and concerns with Him and ask Him to heal my fragile mama heart for all that goes on around and with us.

It’s strange walking into the family lounge sometimes. There is 1 family lounge that we all share, the CICU (cardiac ICU), PICU (Pediatric ICU) & NICU (Neonatal ICU) so you watch people walk in, survey the room, look to see who’s in there and what mental state they appear to be in before you ask anyone anything. The standard greeting in there is “How’s your baby today?” But you can only ask at certain times in case like last week, I walked in and it appeared the family was planning a funeral so I didn’t walk up in a positive way and ask how their baby was doing that day. We read the room and feel the atmosphere and sometimes we just nod our head or give a sincere look and sit in silence with others while praying for what we are all going through together that’s so different yet so similar.

There were lots  more specific updates about Gideon but I’m tired and don’t remember all the specifics anymore. All in all, he had a good day. Continued prayers for weaning off the Milrinone, weaning off the air, weaning off the Lasix, improved cardiac output, improved kidney function and weight gain. And so many thanks to God and all of you for the prayers that we are seeing be answered everyday when he makes progression in a positive direction. Bo had the chance to speak with his surgeon both yesterday and today which was very reassuring to hear his assesment of Gideon. He just says that Gideon is a little guy, he needs more time to heal than other babies who have gone through this who are bigger and stronger. We are headed in the right direction, just on Gideons timeline, not the standard timeline :) Gideon also needs to ‘grow into’ his pulmonary band they put inside his pulmonary artery. That band has to last him 6 months while he grows until he can have his big surgery to repair all the missing stuff on the inside of his heart so they made the band a good size for him to be able to grow into it over the course of the next 6 months and for it not to get too small for him which means right now, it’s pretty big and he’s over oxygenating (hard to imagine how that can even happen) so that’s something they are watching closely as well. His surgeon is happy with the size and function of the band and think it will fit him perfectly for 6 months, it’s just going to take him a bit of time to grow into. Maybe I’ll explain his 2 different heart surgeries in another blog post soon, I know tons of people have questions about what he had done and what he still needs to have done that will be scheduled in 4-6 months. Not right now, I need to go make him some milk and sleep snuggling the biggest little man who is already in my spot heating up my bed for me. That would be Elijah :)

Thank you for the continued prayers! Don’t forget to give blood! :)