Day 64 - Desating on High O2s
Thursday, March 4th, 2021
This morning James had an EKG and an Echo. These were not his favorite. We are still waiting to hear results. This evening James weighed in at 2050 grams (4lb 7oz). He hasn't been making a lot of regular bowel movements so he may lose a few grams in the days to come. James also pulled out his OG tube again in MacGyver style. Yesterday he learned how to spit and blow bubbles so he does this to loosen up the tape on his chin holding down the OG tube. Once the tape has come off he then uses his tongue to move the tube out of his mouth. It is amazing! Lol But also hard to watch the nurse put this back in, as he gags the entire time. So that is 3 OG tubes out this week!
James sported a new onesie that is very cute and soft, but a little big for him still. Room to grow! He is our rainbow baby! Thanks Grace!
Mom was able to do a 3-hour hold today from 3:00pm to 6:00pm. James did excellent and slept the entire time except for the last 15 minutes where he was alert and interacted with Mom. She went over the names of all of his grandparents, aunts, and uncles. Jimmy has a lot of homework to do.
Needed to cool off after his hold with Mommy... A baby's heart rate will increase if their temperature is too high.
This evening James started to desat like the night before so we tried another hold again this time skin to skin with Mom. He did great for the one hour. When he started to get feisty (like grab his ET tube) we realized that he had a dirty diaper! Mom also realizes that his nails need to be filed down! Ouch!
We are keeping an eye open for a musical/white noise (?) machine that is approved for preemies in the NICU. Probably something that you don't have to plug in and something that we could put in his incubator/crib. After some short research it looks like the white noise is actually not beneficial for preemies. 🤷 Instead it is recommended that they hear voices and calm music. There has to be something that is approved for preemies in the NICU. Tonight we were serenaded by a new dad nextdoor who was playing the guitar and singing to his baby born yesterday. I think they should wheel out on all the incubators to the hallway for the live entertainment. Our go to in the Abramowitz household is Dad changing the words of Tom Petty's Free Falling. Renditions of Dad's "Champ-ion" can be found on Spotify.
Overall today we haven't made any changes on the ventilator and the the decision was made by the doctor to not increase the tube size today, maybe tomorrow?! We are really pushing for that and so are a lot of the RTs and Nurses. We aren't really aware of the risks of multiple intubations. If that was presented to us then maybe we would understand why we are waiting so long to increase the ET tube size. All we see is the risk of having a lack of oxygen to his vital organs by constantly de-stating. Yes, James may fail the CPAP test right now, many people think this will be the case. However he can have another try after he has the larger ET tube. Sooner the better! Please!
Tomorrow we will discuss some of the options that may lay ahead for James. Conversations we've had with doctors that we really haven't shared yet. Of course it's nice to try and keep the blog as light-hearted and positive as possible but we also would like to invite you on our actual journey not just the "social media" version. More tomorrow...
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