Wednesday Prayer: For all congestion/boogers to clear up! NO SICKNESS!!!
We had a great night last night. Both of us slept for most of the whole night. It was fantastic. He had his first oral feeding today and took 15 ml which is the most he’s ever taken orally so that’s fantastic. The Occupational Therapist stopped by to let me know she realized why he had a bad feeding day yesterday, it was the day after he was taken off of high flow air and babies apparently always have bad feeding days the day after they are removed from that as they learn how to breath 100% on their own and have to exert more effort to breathe, it leaves little energy left for anything else. He did have a couple big poops too which take a lot of energy. LOL.
He very quickly sucked down about 15 ml from the bottle this morning then took a break to poop then took a break to poop again so we just took a break to change his diaper, get him awake and alert again (eating is EXHAUSTING and he only stays awake for up to 10 min because it’s so much work for him) so we took a break for a diaper change and to wake back up, etc. He took the opportunity to poop a 3rd time on mama. Nice fella, thanks for that morning gift. I do celebrate all little victories and pooping is certainly one of them but not so much a party when it’s on me.
He does appear to be more congested today. They have suctioned him and got a little bit of snot, he also had an eye booger this morning so of course I’m freaking out about him catching a cold. I am the only one freaking out about it though. Not only could this extend our stay here quite a bit, it could be a massive setback for Gideon if he does catch a cold. I had a lengthy discussion with the cardiologist about how to best avoid germs with 3 other kids at home and co-op and church, etc He said we just have to make a choice. Do we want to sit in our living room quarantined for 6 months until after his next surgery to do our best to keep everyone in the family healthy or do we want to have the best hand washing practices ever, make sure we are all completely vaccinated do our best to avoid germs and try to enjoy life for the next 4-6 months while we wait for his complete repair? We will have to decide that. Gideon should be much bigger and stronger after he heals from his next surgery and won’t be nearly as fragile as he is right now, but for now, at weighing only 5.5 lbs and being 3 weeks old, it’s best to quarantine him a bit more until he gets a bit bigger and stronger and more stable in a cardiac/pulmonary way which he will only do has he grows bigger and bigger and grows into his pulmonary band that’s been placed inside his pulmonary artery. Right now, that band is a bit too big for him so he needs to grow into it so it adequately restricts the blood flow but it also has to last him 6 months until his next surgery when it will be removed when they rebuild the inner walls of his heart so it’s just a balancing act.
Thank you for the continued prayers and support. We are praying for a congestion free day and good oral feeds. They really want to change his tube feeds up a lot today and tomorrow and we may have to put the brakes on that just a bit because I can tell how it affects him going from 120 minutes down to 90 like they did yesterday and today we’re going down to 60 and they want to push him to 30 tomorrow so we’re more set to go home. I do not, if he shows any more discomfort or congestion, we need to slow it down some. I’m totally fine with doing tube feeds over 60 minutes at home for a week or 2 until he grows a bit more and can see the cardiologist again to change it up. We don’t need to rush all the feeding stuff just to make it easier when we get home, we will have help at home. The biggest help will be having people play with the big kids. Board games, ball outside, art projects, balloon catch, pretty much just any kind of attention and entertainment for the big kids would be the biggest help so I can continue to pump, wash everything, fortify his milk, make bottles, prepare tube feeds, push meds (he only gets meds twice per day so that actually will only take about 10 minutes of my day total), change diapers, count respirations, and try to get him settled back to rest again so I can spend some time with the big boys too. And probably fold laundry. Washing and drying it is super easy for me to do but getting it put away used to be nearly impossible. Any expectation of having that done now is completely gone. I need to buy some new laundry baskets and label each of them so everyone has their own basket and we will likely live out of those :) LOL.
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