It’s been a great day! Gideon guzzled 17 ml by bottle this morning and overdid himself again, we may have to switch back to the ultra preemie bottle nipple to keep him safe for a bit since he’s getting quite an appetite now that he’s not on continuous feeds 24/7 anymore and only gets food every 3 hours now. I got up early this morning and got myself cleaned up (I shower before bed every night but often sleep in until it’s time to get stuff done in the morning and don’t even have a chance to throw deodorant on or brush my teeth before getting busy for the day) so it was nice to be well rested and ahead of the game today.
Because we had some training to do, Bo took the kids to a friends house to watch them while we had our education up here. GOOD LORD!!!!!!! How handsome are these huge fellas!?!?! Oh my mama heart misses them so much. I’m so thankful for facetime and pictures but I just want to have some time to sit and snuggle each of these guys and love on them 1 on 1 for a while. I’ll have to make that a priority after I get home to spend at least a little bit of time with each of them individually to catch up on snuggles.
We finally got to blow up our balloon we have had since we got here. A dear friend sent it to us from the gift shop shortly after we arrived but we couldn’t have balloons in intensive care so I got it blown up to brighten up our penthouse suite (isolation room) today. We love it! So cute! I have always LOVED balloons, fresh flowers and balloons are 2 of my favorite things and how perfect that it’s a heart balloon. So cute!
Part of our training today was on how to drop an NG tube for Bo. I’ve completed the training and had 2 separate failed attempts which were pretty traumatic for both Gideon and I. Bo joked around about it and BOOM. In 1 second flat without even a cough or gag from Gideon, it was down. SERIOUSLY!?!?!?!?!? How does that happen!!!? Well done daddy, well done.
We just met with the occupational therapist again for the day. Feeding him just took 1 hour. Doh! Ha. He is supposed to eat 8x per day…. Hmmm… that’s a lot of math. LOL. The goal is to get him off of the feeding pump first then off of the fortification next. We do that by condensing his pump feeds in an effort to get 8 feeds per day at 30 minutes or less. Right now, we pump (ng tube) at about 45-60 min per feed. When I bottle/breast feed, we are only allowed 10 min each because he expends too much energy eating for longer than that then the rest goes through the tube. When we’re not doing that, I’m pumping to make milk for the bottles and the tube. Lol. This might be a little more time consuming than I had thought it would be. The therapist wants to do 2 bottle feeds per day and 2 breast feeds per day and 4 pump feeds per day. That should be manageable. He gets very worn out after eating and goes right to sleep! He is resting now while I wash things then meet with his nurse to plan out our night and potential discharge information for tomorrow if all goes through.
- No cold symptoms – he has improved again today and has sneezed once. Impressive, I know. Lol. We need to have another full night and day of no cold type symptoms tomorrow as well to consider being able to come home, which they are still planning on doing unless something changes tonight.
- A restful night.
- Cardiac & respiratory stability. He has had a few stable days in a row, we are praying it will continue.
- A new friend whose daughter is here battling RSV. She is a heart baby too and needs some prayers for quick healing.
- The transition back home when we get to make it. The big boys will be so excited to see and play with Gideon but he is still so fragile. You can’t pick him up like a normal baby since his sternum is wired shut and the bone is growing back together, he has less muscle tone than normal babies and will require MUCH more sleep than normal infants.
THANK YOU so much for the continued prayers and support! I will be adding more things to our care calendar/meal train plus site soon as needs arise. Childcare for the big 3 boys while we have follow up appointments with all the doctors he will be following up with, probably some added meals as I’m heading back home soon to help us settle back in with all 6 of us at home for a short while, I’m not sure what else but I’ll certainly let you know!
We will be on quarantine/isolation at home for a while with the continuation of the flu season being extended into March and may not be up for very many visitors for a bit. All of our families haven’t even had a chance to meet Gideon yet but we need to make sure entire households are 100% healthy before someone comes around him. Even a mother who has a sick child at home can’t be around him right now so we will be very careful about who we allow to meet him in person while we’re still in such a fragile time with him. We love you all so much and are so grateful and thankful for your prayers, support, encouragement, meals, help, thoughts, comments & wishes. Please please please understand we want to spend time with each and every one of you, we just have to protect him right now while he’s still so fragile while we wait for his next surgery in 4-5 months.