Steps Backward

Exhausted. Sick. Hurting.

Crew was doing really well up until a couple of days ago. He started with a rough night, then it expanded into rough days. It flared up after they started vitamins and fortifying Lindsay’s milk to help him gain weight faster. He was pretty much inconsolable for 48hrs or so. The nurses were trying everything and he just wouldn’t stop crying. Lindsay and I would communicate to the nurse practitioner that he was extremely gassy and was very upset, but we weren’t listened to because we were with him for the entire day helping to keep him calm. Finally Saturday night at midnight we just decided to go home and let the poor guy scream so that the nurses (and charge nurses etc) would know he actually had a problem and they needed to take action. 😢 To be fair through all of this, though, we did have one nurse during this time that tried to get him meds to help but the nurse practitioner wouldn’t go for it.

We woke up the next morning and our best nurse was on and she said, “What happened to my baby? He’s totally different now.” She hadn’t been on for a few days..

We got to the hospital yesterday and Lindsay let loose (only one of us is allowed in the unit at a time) so that everyone was very clear that something was wrong and they needed to fix it. We finally got them to give Crew a probiotic and switch his formula fortifying to a gentler kind. Also, either nurses were moved around or we were blessed to have a good night nurse last night too. 🙏 Between Lindsay and our solid nurse helping pushing through the day to get Crew more attention and the good night nurse, they were watching close enough and saw how he was still dropping and getting even worse through last night. They started lots of blood tests, x-rays, and antibiotics and our phone rang at 4:20am with all of this update. Talk about mad panic for us seeing Primary’s calling then..

He looks completely worn out and miserable as could be today. At times his resting heart rate has been mid 180s (normally in 130s) and breathing is very rapid and labored. They also switched him to 2 liter of oxygen and from low to high-flow in order to help his lungs fully inflate (x-ray showed they weren’t). But, he’s at least finally getting a bit of sleep. Lindsay was even able to have a reassuring moment of him waking up for a few minutes to look around while she held him.

We’re far from out of the woods. They don’t know what’s going on or what’s causing it. There are blood and urine cultures running that might have answers, but those wont come until tomorrow. They will also continue to run them for the next 5 days to be sure nothing else shows up.

Thank you for the kind messages, and the fasting and prayers that so many of you jumped on today. The effects are being seen.