All the tests went well. The reconnection surgery and g-tube insertion surgery also went well.
The only major change was during surgery the NICU Dr in charge decided, based upon the large amount of new babies they had arriving, they were going to move Jaylie from the NICU to the PICU (Pediatric Intensive Care Unit).
While this move is a blessing, it was/is SUPER stressful for Kristina and I because this change in location is a MAJOR shift in the daily routine for Jaylie's care and the primary person overseeing Jaylie's daily care. In the NICU you have a nurse that is assigned to over see your care and make sure everything is followup on and that your baby is well taken care of. In the PICU there is no such concept of a single person that is responsible for the care of your child -- this is a major shift for Kristina and I. What this means is Kristina and I are now the sole responsible people for ensuring all of Jaylie's medical background, like's and dislikes, communication of what is 'normal behavior' and communicating all the unique attributes about Jaylie to the nurses and Dr's is our responsibility as her parents now. While we as parent gladly take ownership for these responsibilities, it was quite upsetting to be told within a matter of hours we were the new subject matter experts that would need to communicate with the new nursing staff and Dr's concerning Jaylie instead of going back to the NICU as scheduled. This news was not only upsetting to us, it was also upsetting to the nurses whom where expecting Jaylie to come back after surgery to finish-up her recovery and prepare to go home.
The PICU is a good place. There are a lot less restrictions in the PICU compared to the NICU. The PICU is geared towards parents being the primary care taker with support from the nursing staff when needed. Jaylie has her own room now. We can visit and/or stay with here 24/7 now.
Jaylie is recovering well now in the PICU. We hope to be leaving the PICU (and the hospital) by the end of the month is all goes well.
Jaylie is right around 5lbs 6ozs now.
This weekend we finally got around to remodeling Jaylie's room. Kristina and her mom (and all other friends and family not mentioned) did a great job in picking out colors, paint and 'STUFF' to make the room really special and unique. The room has turned out amazing! I'll post pictures as soon as Kristina gets to see the final product. Kristina left a bit early tonight to go spend the night with Jaylie while her mom and I finished up some final touches on Jaylie's room.
As always, thank you SO much for your prayer and support!
We could not do it without you!
Nathan, Kristina and Jayile
Here is a picture from Friday's surgery:
So glad the surgery went well and that you are able to spend as much time with Jaylie now!! Excited that you have the end in sight and will have her home!!
ReplyDeleteHope to maybe meet her this Friday when we come to Swedish for Spencer's surgery!! Y'all have done an amazing job and it's so wonderful when they finally come home...can't compare my 64 days in the NICU with you guys now. You are my heroes!!