A Valentine’s Update

So it’s been a few days and there are a few things to update on of course.

Lindsay and I went into his room Thursday night, right after I posted the last blog post, and the nurses had just changed. It was time for his ‘cares’ which is temp, diaper, food, bath every other night, etc. It was a bath night so we were uncovering him and I noticed that his left shoulder and chest was very swollen and puffed up. I pointed it out to the nurse (a float nurse) and she didn’t think anything of it, but Lindsay agreed with me that it wasn’t good. Still the nurse didn’t think it was an issue so Lindsay pushed her to have someone else come and look. The charge nurse came and immediately upon seeing it she knew that his extended dwell IV had infiltrated his vein and it was pumping his TPN and lipids into his tissues. (Extended dwell IV is one that goes in further than an IV and can stay in longer. In Crew’s case it entered in the inner fold of his left elbow and went up to about his shoulder). The charge nurse had our nurse turn off all fluids and pull the extended dwell. Then the little guy had to get 5 shots in a star pattern all around the swelling to help his body break up all of the fluids. Then he had to get a new temporary IV in his foot until the team that does the extended dwells was in on Friday.

Whew.. It really got us worried for a bit. Lindsay wasn’t feeling great after all of her dura tear situation and so we left Crew while they did all the above work. Luckily I was able to go back over to Crew when they were finished and hold him for a couple of hours into the night. Being able to hold him after all of that was just what Lindsay and I needed to happen. I was able to send Lindsay pictures and updates of him while she rested in bed, and both of us were reassured of his situation.

Prior to that moment, Crew had always been completely zonked for us and wasn’t very responsive to us. That night he just sat there and stared up at me, as well as looking all around the room. Instant relief to me (and Lindsay) that things were OK with him and that there wasn’t some other issue from another shoe that would drop on us later. It was a special moment holding him.

Some good news - Lindsay was allowed to breastfeed Crew on Friday!! Woohoo! He has been making such good progress that they were ready to clear him to try. He latched the very first try too and went right to town. Easily the best initial breast feeder of our three.

Actually 2/12/21 😄

Lindsay was discharged Friday afternoon and we’re both glad to be able to sleep in our comfortable bed! No more middle of the night nurse interruptions for either of us. 🙌 Linz is also feeling TONS better. So so much. Yesterday she was able to be at the hospital with Crew for more hours than we thought she’d be able to make it, so we’re very grateful. We were also able to chat with our good day nurse yesterday about how we’ve had some floats who didn’t quite know their stuff the last few nights and it’s been a bit of a rollercoaster day to night. She took it upon herself to go and chat with the charge nurse about it and so they were great and shifted off the float last night. Now for some honesty time... I actually feel incredibly guilty about it. I know (and yesterday’s nurse confirmed) that Crew is being given float nurses at night because he is doing so well and he’s probably in the best situation out of all the kids in the NICU. As I look around our pod of beds, it does not escape me how blessed we are that Crew is an isolated omphalocele (with a tich of lung and heart issues that are expected). There are so many other kiddos in there that need so so much more help than him. We pray for them all.

Crew keeps progressing very well. They have been increasing his milk amounts and decreasing the TPN with every feeding. Last night he had the TPN and lipids removed, so he’s moved past that. They are now watching for him to have good weight gain from just the milk, and to be able to get through his entire feeding via breastfeeding or bottle. He currently tuckers out maybe halfway through and won’t eat anymore, so they push the rest through his NG tube. They would like him to be all breast/bottle before discharge. He’s getting there, and with how much of a little O warrior he’s been, he will get there.

Last little bit of updates I suppose would be that he got another extended dwell placed after the infiltration so they can use as needed. He’s awake a whole lot more lately, so we enjoy seeing that on the Angel Eye camera that’s on his bed when we’re away. The membrane over his O is also starting to thicken and go opaque, and his skin right at the edge of the O is getting pink, which is good - his skin will need to grow up and over the entire O eventually. Lastly, he’s been on and off of oxygen over the last couple of days, never more than .12 - the thought is that as he fills his tummy with food it’s pushing up on his lungs, then he zonks hard to sleep and breathing slows. ☺️🤷‍♂️

We’ve received so many messages and acts of service from so many. Our hearts are overflowing lately and we’re so grateful for all of you. Thank you for all of the prayers, thoughts, and positive energy that you’re sending to our family.

One quick edit: After I had already typed up all of the above, Crew was moved to an open crib tonight!

Moving day!