Well, I don’t really have an update for you but this picture was just too cute not to share. This was as I was getting Gideon ready for bed tonight.
We have completely changed his feeds and he no longer uses the tube at all during the day which is great. He breastfeeds during the day and gets topped off with a bottle a couple times per day to get the extra calories and protein from the fortified milk as well as have more practice with a bottle. He isn’t as proficient at the bottle yet and they hope he improves since that will give him a better chance of not having to get the NG tube replaced after his next surgery if we are able to get it taken out before it which is our goal. He is still gaining weight but it has slowed down which we expected since he was getting double feeds for the past 2 weeks.
We have therapy tomorrow and see the cardiologist next week for our official initial visit with him as well as a repeat echo cardiogram. The cardiologist we will be seeing is who diagnosed Gideon at the hospital at birth, one of the partners of who we had chosen originally but we haven’t been able to see him yet. We are excited for our initial visit with him, he seems like a pretty awesome man who is very straightforward and honest and even chuckled on the phone with me when we spoke last week making sure I told Bo “hi” as they have developed a relationship already from the few hours they spent together in the NICU when Gideon was born, it was funny.
That’s about it for now. Prayers are for Gideon to keep gaining weight, have ease when trying to poop, and his physical therapy. We are going to start working on his neck muscles as he has no head control because he hasn’t been allowed to have any tummy time yet due to his sternotomy which has also caused torticollis (twisted neck – he only looks to 1 direction) which then resulted in him getting a flat head. We are praying tummy time and physical therapy will fix all of those things but prayers would certainly help as well!
I don’t have many details but baby David who I asked for prayer for still needs prayer. Apparently he needs to gain quite a bit of weight to be eligible for a heart transplant so that’s what the prayer is for him right now.
My family (mom & dad, aunts & uncles, cousins,) could still use prayers as we all grieve the death of my uncle.
All in all, we are doing well! We are still getting a routine down of the day to day stuff, we look forward to returning to co-op and church soon as Gideon gets stronger, he is still a bit too small/weak to wear in the ergo but I have a carrier I can wear him in now and now that I don’t have to use the pump to feed him during the day it’s even less daunting to think about taking him out and about with me. He is still very scheduled which the doctors prefer, they don’t want him awake too long, they don’t want him to fussy, etc because he can’t afford to burn extra calories so we have to try to keep him on his schedule to the best of our ability and I’m so type A, it would give me anxiety to deviate from that. Hahaha. We appreciate your prayers, support, encouragement, meals, money, everything. We have been so blessed in so many ways by you all through all of this, we are SO thankful for all of your help. The meal train doesn’t have any dates on it beyond this month but I’m hoping to keep that one open to add to it later as we prepare for Gideons next surgery. The “big” surgery will likely take place in June or July but it all depends on his weight gain and his cardiac output over the next couple of months as well as the pulmonary band he has on. Now that we have an idea of how surgery and recovery time will go, we can plan better for next time to set us up for success rather than being thrown in the deep end and trying not to sink like we were this first time around. We certainly have some ideas of how we can make it easier on the kids and Bo and I as well and accept the help you all so willingly give to us. We are so appreciative! Thank you! I can’t say it enough!