Here’s one big update post from what’s been happening the past week. 

Joy is well recovered from her surgery now! The first few days at home were rough and she started teething at the same time so it was double the pain for Little Miss which was so hard to see. But we are on the back end of that now (the amount of drool is still massive but she’s pretty well weaned off of all the pain meds)! We tried for all of about 2 days to keep Joy’s nasal stent in but once she figured out how to pull it out it never lasted more than about 5-10 minutes. Her Craniofacial team at Children’s gave us the green light to discontinue its use— they said if it doesn’t just naturally stay in on its own that it’s honestly more work than it’s worth because the data shows there’s a high likelihood she’ll need a corrective rhinoplasty surgery in the future anyway, regardless if she wears the stent or not. 

Earlier this week Joy finally took to a bottle for the first time since her surgery! The doctors at the hospital weren’t too worried about her being able to take to one before discharging since she has her feeding tube, which meant Joy got really used to not having to work for her feeds. She was already becoming increasingly tube-dependent pre-op— on a good day I could get her to finish half an ounce on her own. I am unsure if it was because of the full week she was exclusively tube fed, or if it’s because of the new anatomy inside her mouth, but she has lost nearly all of her feeding skills. I can tell she’s trying hard and is frustrated but there is an evident disconnect when she eats and she ends up spilling half or more of it. I’m hoping that with more practice and a referral to a feeding therapist (see below) that Joy will soon be eating well again and we can get off the tube feeds entirely! (Prayer request!) There was one time she drank her entire bottle (minus what she spilt) which gives me hope 🩷 

On Monday we finally met with her neurologist for the first time since she’s been born. He did an assessment of Joy and confirmed she has delays in her motor skills due to low tone (not anything we didn’t already know). It’s not clear right now which delay curve she’s on (mild/moderate/severe) but it should become more obvious between months 4-6. 

Yesterday we had our initial assessment by Texas ECI (Early Childhood Intervention) and they sent referrals for (shocker!) Physical Therapy and Feeding Therapy. They will be coming to our house for the therapy sessions, which is REALLY convenient since I am sooo over the long drives to Joy’s appointments. 

Angels of Care, the pediatric home health agency we were referred to, has finally finished processing our insurance paperwork and is working on getting nurses scheduled to come to the house to help with Joy’s care. We’ll start out by getting PRN nurses until a permanent nurse is found (prayer request!). 

This week Joy weighs 13 lb 2 oz (35th%!) Moving on up!!! 

Today Joy gets her helmet which she’ll wear for a year. That will be a whole separate update on its own 😅 Pray for Joy to adjust to it quickly! 

Pictured: Joy proud of herself for pulling out her feeding tube 😂🥴

Thank you all for the prayers and support!