Our Down Right Beautiful Life: Claire Always Gets There

Taking a week off for vacation means that we've been busy playing appointment catch up! Claire has had a busy, busy week.

We have been working with speech, pulmonology, GI, and even Claire's ENT to try to figure out a feeding plan that allows Claire to eat safely and protect her lungs. Everyone believes that she is still struggling with aspiration so we have decided to do another swallow study (her fourth!). This time we will spend longer trying to find more answers as to when (and hopefully why!) she is aspirating so that we can develop a plan to help protect (and hopefully begin to heal) her lungs, currently they are getting worse so it's important that we make some changes. Depending on what we find during the swallow study, she may have an endoscopy, laryngoscopy, and bronchoscopy done all at the same time so that we can gather as much information as possible. She had a scope done on Saturday to check her vocal cords and they looked good! For now, we have had to stop nursing her to sleep and during the night, so we have all been VERY tired this week as she gets used to the new routine, she has shed lots of tears. Because aspiration generally happens most often when babies are fatigued, this was just a small compromise so that we can continue to breastfeed, at least for now. She is still on twice/day breathing treatments for asthma.

Additionally, we saw the urologist on Monday because of Claire's recurring UTIs and abnormal renal ultrasounds. Truthfully, I thought at the most he would be concerned that she doesn't fully empty her bladder but he noticed when reviewing her ultrasounds with us that her kidneys appear echogenic and feels that it's absolutely necessary that Claire have a sedated procedure where they place an IV and inject an isotope into her bloodstream to see if her kidneys are damaged. We will be at Mary Bridge for an entire day (9am-3pm) for this procedure.

We also saw Claire's surgeon this week, she said Claire looks fantastic and we are able to completely STOP irrigations and dilations unless she doesn't pass stool for more than 24 hours, I'm sure you can imagine how excited we are for this news!!!

Finally, Claire has gained great weight, in fact, she has gained nearly too much! It is important that we "go easy" on Claire's heart and lungs because of all that they have been through. This means that we should make changes to her weight slowly. Since we've already stopped nursing during the night this week, we are hoping that is all of the changes that we need to make in order to slow down enough to make that happen.

Altogether Claire is doing very well! We get to celebrate how far she has come every single day, she is such an amazing little girl and she has come so far! It has been a little bit of a discouraging week, getting some unexpected news about her lungs and kidneys but everything pales in comparison to what she has already been through and we know that she will conquer these challenges too. I voiced some disappointment at one appointment this week with her trouble to swallow even pureés (because we're running out of ways that we can safely feed her) and her GI doc reminded me that "Claire always gets there!" and it's true, she always does. I am excited that we now have a plan to get answers so that we can help her thrive yet again!

As always friends, thank you for praying for us, for encouraging us, and for offering your support. The appointments, therapies, research, and added routines that, oftentimes, consume our day(s) could easily leave us feeling isolated but your little notes, comments, and messages of encouragement in the midst of it all remind us that we aren't alone and we can't thank you enough - nothing is too small and nothing goes unnoticed. What a story we will have to tell one day!!