July 6th - Evening Update

At this moment, Annelise is looking so cozy in her isolette.  So far, her heart rate looks super sweet on the monitor tonight!  She is still having those periodic breathing episodes... while I don’t like them one bit, I can quickly be thankful that they are not apnea episodes... which last longer and often result in the baby turning blue!  Thankfully, even with the periodic breathing, her O2 sats look great too!  Hooray!  The best part about the day was watching her meet another cousin, aunt, and uncle ❤️❤️❤️
We have been so lucky to get some visitors at the hospital from family, even way out here in Nebraska!  We definitely feel loved on🥰
We’re also making friends with others in similar, but always different circumstances too.  There is a network of support for the parents of babies with trisomies here, because many of us have been a part of the same Facebook group for parents of babies with trisomy 18 and T13, and then either delivered here, or ended up transferring here when their hospital wouldn’t provide the heart surgery that Dr. Hammel can and will here in Omaha.  Our first day in the NICU, I was spotted by another mama whom I had chatted with on the Facebook page earlier on in our pregnancies because we both had babies diagnosed with Spina bifida as well as T18, which is super rare apparently.  Our girls were in heart surgery 6 days apart.  It has been such a great joy to get to know this family while we are all away from our homes, going through a similar journey.  They also love the Lord, which adds another dimension of connection, as we pray for each other and process how we see God at work in our amazing babes.  Their daughter, Sarah Catherine, is going in for surgery tomorrow at 7:30am, to get the shunt placed that will drain the cerebrospinal fluid from her brain... the same surgery that the neurosurgeon predicts Annelise will need in the future, but hopefully not before she grows much bigger.  I thought it would be super powerful for Annelise to share her prayer warriors with her “heart sister”, Sarah Catherine, and her family while they endure another surgery tomorrow morning.  God isn’t a God of scarcity.  He is big enough to be all that we need at the same time as He is all that Sarah Catherine and her family needs.  I love that!  I love lifting up our new friends and their babies to the Lord, and seeing how he is writing each child’s story, and how He brought us all here, to this place that He prepared in advance for us to experience now.
Navigating the ups and downs is emotionally exhausting!  But I’m happy that the day ended with a new-to-us nurse who happens to be awesome, and who spent time helping Annelise get comfy in her bed, so comfy that we got to see some of her super adorable smiles... and icing on the cake is her 4th of July bow, hand made and given to us by the mama of an adorable toddler with Trisomy18, who was here for some appointments the other day, and connected on Facebook to meet up💖🥰🎀.
Check out this sweet face!😍