145 Day NICU Update
Hi everyone,
Apologies for the delay in this update — Mr. Clifford has been keeping us very busy!
I can’t believe it’s already been a month since Clifford’s tracheostomy. While he has recovered well, the last few weeks have still been tough. We had high hopes that getting the trach would give Cliff the support he needed to go home, but he showed us he just isn’t ready yet. Although he is in a much better place than he was a month ago thanks to the trach, his lungs and tracheamalacia are too severe to manage outside of the hospital at this time. With that and weaning his sedation meds, he’s having more desaturation spells where his oxygen and heart rate drop. These episodes can be quite scary and incredibly hard to watch him fight through. Codey and I have felt a little defeated since having such high hopes for improvement, but we know we just need to be patient. The reality is that Clifford just needs more time. More time to grow his lungs and get stronger. Doctors are saying we most likely will be in the NICU until summertime, and even after we’re home, his lungs will still be growing and healing for years. It’s not easy news to digest, but we’ve since come to terms that this will just have to be our normal for now. The plan moving forward is to continue to support Clifford with the vent and through his episodes until his lungs grow enough to be on lower vent support. Then, he will transition to a new vent that he would come home with. Once he proves to be stable on the home vent and no longer has these desaturation episodes, we will work towards coming home. Once we’re close to coming home, we will need to put together a team of nurses for 24/7 care. (Know anyone that would be interested?!) At this point, we’re not worried about a timeline. We understand his healing is going to take months and even years. That’s why he has the trach, so he can be a normal baby while still getting the support he needs. Doctors feel confident that with time and growth, Clifford’s lungs and windpipe will get stronger so that he eventually will get the trach removed. Patience, patience, patience. It’s not easy but we’re so thankful for everything Cliff has fought through to be here!
Some positive news is that Clifford has been doing well developmentally and is learning how to do normal baby things! Now that he is more alert and mobile, he participates in various therapies every day — Physical Therapy, Occupational Therapy, Music Therapy, and Speech Therapy. He has lots of smart people in his corner! Clifford is doing great with tummy time, sucking on his pacifier, and watching his mobile. We were even able to start nursing (from a pumped breast) and will hopefully slowly work towards bottling. We’re so proud of him and love watching him learn and grow. Did I mention he is 9 pounds? And, he is almost on the curve for length for the first time — yay! This is very exciting because growth is the key to everything. Speaking of growth, he is teething! There are two little baby teeth that are close to popping up any day.
Getting comfortable with the trach has been a little overwhelming to say the least, but, Codey and I completed our first ‘trach training’ course to learn how to do all of Cliff’s trach cares. Each morning and night his trach site needs to be cleaned and dressing and trach ties changed. What started as an extremely nerve wracking and stressful task, has slowly (very slowly) started to become more comfortable for Codey and I — we do most of his cares independently now! And I have to say, I’m pretty dang proud of us for jumping in and figuring it out. It’s been so nice to be able to pick our baby up whenever we want and take care of him. And now that I’m on maternity leave, I get to spend my days loving on him, comforting him, and being his mama. It’s been absolutely amazing to have this time to bond with my baby.
While Clifford is doing well and has made so much progress, there is still a lot of uncertainty and battles ahead. We are not out of the woods, and every day Clifford is still fighting for his life. We have a long ways to go, but we feel confident and full of hope that we will get there! Thank you for the continued support and prayers for our sweet boy, it means the world to us.
With love,
Sadie
