As of yesterday, Claire is now TWO months old! She is 8lb 11oz (2nd percentile) and 20.5" long (also 2nd percentile). She is sleeping through the night [most nights] and smiling more and more when she's awake. She loves tummy time, being held, her siblings, and making silly faces. Here are her two month pictures:
Yesterday morning we worked on insurance/billing things and tried (for 6 hours!) to get Claire to drink the fortified breast milk, finally after 6 hours of her not eating, crying non-stop and me still in my pajamas, I gave her regular breast milk - getting the calories IN her is the most important after all. Her GI doc called with the results of her Upper GI series, as soon as I heard his voice I knew he didn't have good news. Claire has both tracheomalacia and an artery that is compressing her esophagus (aberrant right subclavian artery). He has sent her imaging to a cardio-thoracic surgeon for a consult, he will review the images and will let us know whether or not it is surgical. He may also request a CT so that we can get better images. If he decides that it isn't surgical, we will just be keeping a close eye on it.
occurs when the cartilage in the windpipe (trachea) has not developed properly.
Instead of being rigid, the walls of the trachea are floppy.
Because the windpipe is the main airway, breathing difficulties
begin soon after birth.
a rare anatomical variant of the origin of the right or left subclavian artery.
I went in thinking that we were just going to do a quick echo so that we could check it off our list and move on to other things. I was not at all prepared for the news that we received, Claire is in the beginning stages of congestive heart failure. Her heart itself is getting larger, the pressure within her heart is too great, and because of all of this, her lungs are filling with fluid. We have started her on a heart medication and it looks like open heart surgery is inevitable, although we would like to hold it off until she is around 6 months old (December). We will continue to go in to see the cardiologist to monitor.
The cardiologist also feels that with as fast as her lungs are filling with "junk" and how bad her breathing is, that we are also looking at something else going on and agrees with the GI specialist and pulmonologist that we must work on safe(r) swallowing. We will spend Monday morning being evaluated by a speech therapist to get her opinion on whether or not she feels like it's safe to continue feeding Claire by mouth and/or whether it's possible that she's aspirating the reflux. Depending on her weight gain over the weekend and what her GI doc decides based on the therapists recommendation, we may be getting an NG or NJ (looking like NJ is more likely due to the reflux) tube put in for feeding on Monday.
In the meantime, we are back to thickening her breast milk - which creates more problems as it affects her differently because of the Hirschsprung's disease and is why we had to stop before but, at this point, her lungs are more important! Even this morning, she hasn't eating anything since last night around 8pm and has only eaten one ounce, she is exhausted.
It is looking more and more like we will be going "off the grid" until we can get Claire's breathing, weight, and heart better. With all of the treatments that we're giving her, all of the appointments that we'll be adding now with all of this new information, the hours we are spending on the phone trying to coordinate everything, and just the regular day-to-day things too (that, admittedly, aren't getting taken care of very well), it's time to admit that we need to pull back from some other things and focus on our family. Please know that we love you all and will do our best to keep in touch as much as we can, we miss you all very much and appreciate all of your messages even if we haven't been responding like we'd want to!
As I'm sure you can imagine, I haven't been sleeping much ... it's beyond scary to have a little one who is struggling with breathing. Specific ways that you can pray are:
- Her heart: we are being told that open heart surgery is likely inevitable now but we serve a great God and we believe that anything is possible!
- Her breathing: that we can figure out a way to keep her lungs clear as the longer this continues, the more likely it is that she will have irreversible damage to them
- That we can find a way to get her eating again
- Her tummy: for a reason we still can't figure out, Claire's tummy is full of gas (if you compare her 1mo pictures to her 2mo, you will see what I'm talking about), we're trying all kinds of things to figure it out
We do know that we are very blessed and that this could all be so much worse. As discouraging as it is to feel like so many things are going wrong [I'd be lying if I said there hasn't been a lot of tears] and as much as I feel like we need to "pull back" from things that we love for this season. I also can't help but be so thankful for all of the things that are going right! Claire is here with us and she is happy <3.
As always, thank you for taking the time to follow our journey and for your continued prayers. We appreciate each one of you.
My friend Shannon French sent me over to your blog. First of all, Miss Claire is beautiful. Stunning really! I am praying for some answers for you. My daughter out grew her laryngomalacia, but it was not severe. She also has 2 aberrant arteries--one is the same as your daughter. That being said, hers isn't affecting her yet. She is almost 5. It sounds like so much is going on with sweet Claire and I am praying that you will get some answers soon. I do wonder if all of it is tied together--the heart and maybe aspirating? I am sorry, I seem to be brainstorming in the comment section!
ReplyDeleteThanks for taking the time read our blog and to say hello Anna! I'd love to stay connected.
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