We are home. Exhale.

Since my last post, some of  our frustrations with Amos’s care continued and escalated. After making it through the double holiday, we landed on a weekend, so we still saw a revolving door of specialists, doctors, and nurses (sometimes 3-5 different ones in the same day). 

Drew and I decided to divide and conquer to work towards meeting Amos’s discharge criteria. Since pumping at the hospital proved difficult, I stayed home and pumped while Drew put in significant time at the hospital, including two overnights. Amos was meeting the majority of his feed quotas, but the doctors would look at some outliers in his oral feed amounts as evidence of not being able to consistently orally feed. With Drew there to handle the feeds and pass on the information that kept falling through the cracks, we were finally on the road to discharge. 

Amos’s feeding tube finally came out freeing him from his last remaining tube/wire. The last hurdles were a stress test in his car seat and some routine newborn screens. They also wanted to see him maintain/gain weight on only oral feeds. Those last days were a blur with no one getting very much rest at all. 

Finally, discharge orders were put in and Drew brought Amos home! For the most part, we will continue on with the assumption that Amos is a typically developing baby, but he will be on an early intervention track as well as participating in a program for infants that had NICU stays, early complications, etc... This will help us to closely monitor developmental milestones and address any delays. 

We are working on figuring out transitioning from bottle feeds to more breast feeds but since breastfeeding requires more effort on his part, he does not pull his needed amount of milliliters. He also does not take enough for me to replace a pumping session with a feed. We try to sync feeds and pumping to minimize the amount of time spent since we are still helping him regulate with scheduled feeds/pumps every three hours. When you subtract the time the feeds take, we usually get at most two hour stretches of sleep through the night. So in short, we feel like many parents of newborns, totally exhausted. 

For myself, I still feel very disconnected and disoriented. It’s no secret to many of you that I struggle with generalized anxiety and depression; the events of the last three week have piled on to these existing struggles. I know I will be processing and working through all that happened for some time. For now, pray for opportunities for me to connect with Amos and for the ability to step outside of the sadness and worry to be present with my family. 

My mom has been with us for about a month and will be leaving this week. This will be a huge hit for Willa who has been soaking up time with grandma and a big change in our support level for our entire family. Drew’s mom should be coming at some point soon (yay!), but this change to just the four of us will be challenging but also an opportunity to bond in new ways. Willa has gone through a lot during this time; she has been unsure how to connect with me post-surgery and insecure with Drew and I in and out of the house. She’s very excited to have Amos home but does NOT like his crying. I’m looking forward to more time with her, suddenly she seems like she’s a teenager in comparison with Amos! 

We are so thankful for the multitude of ways you have supported our family. You have fed us, equipped us with supplies we didn’t know we needed, cheered us on, offered your own NICU/hospital stories/advice, and lifted prayers on our behalf. Looking at the month ahead, we still have folks signing up for meals, which is such a gift. 

Thank you for everything, we hope to write up some thank you notes soon! We are also excited to pay it forward to other NICU families and those with sick kids in the hospital. 

Ok, back to my nap.