We have some new news to share ... the pulmonologist reviewed all of her recent chest X-rays and feels that, this far out from heart surgery, we should be seeing a huge improvement in her lungs, respiration rate, noisiness, and effort that she is needing to breathe. Her lungs are still hyper-inflated and the peri bronchial thickening is actually getting progressively worse which means that there is something else going on. He has diagnosed her with airway disease / asthma. We have started three new medications to try to help, one steroid that is daily and the other two that are based on her symptoms. He feels that, in her case, aspiration is the most likely cause of the inflammation and recommended that we stop breastfeeding. As you can imagine, this was pretty disappointing news since we worked so hard to get to the point where she could do it. But, because she could be aspirating saliva, reflux, medicine, etc., I may have convinced him to give us a 2-week trial with the new medication before we stop breastfeeding and switch back to thickening (which, as you might remember, made it hard for her to have stools and we had to irrigate 2x/day). She also has tracheomalacia and bronchomalacia, which means that both her windpipe and bronchial tubes are "floppy" which can lead to retained mucous in her chest since her cough isn't as effective at clearing secretions as it should be.
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| Claire isn't a fan of the breathing treatments |
I sent a message to Claire's GI doctor and asked his blessing to start solid foods, my hope is that lessening her need for breastfeeding might help just enough that we can continue ... so, she had green beans for the first time this week! She LOVED them and is already trying to feed herself. Last night was the third time she has had them and she figured out how to spit ... needless to say, feeding Claire is quite messy. She grabs the spoon anytime it comes near her AND she spits (it is very much like a green bean shower for Mommy!), we have a lot of fun laughing though!
Her renal ultrasound results were about the same as her previous ones. The hope was that they would be improving over time so this is a little disappointing. We will discuss these results and the results of the VCUG that she had back in November with the urologist.
She is getting very determined to find a way to move around to get to what she wants. She has started "scooting" forward more and more! She uses her legs and slides her face and shoulders along the ground, it's slow but it gets the job done. She is also getting pretty good at the "superman" (chest/legs off the ground at the same time) although it isn't quite as efficient in helping her move forward as she hoped it would be.
She celebrated 3 months post open heart surgery this week! Doesn't she look GOOD?!
And here are some more pictures from our week:
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| At the pulmonology clinic |
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| Baby masks help to keep her healthy and germ-free when we are in public places since even a little cold could mean a trip back to the hospital because of her lungs/airway and small nasal passages. She doesn't always leave them on (apparently they're fun to eat!) but we try. |
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| At her renal ultrasound |
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| "Date night" at church with mom & dad |
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| Sleeping through the PFC meeting at Anna & Levi's school |
As always, THANK YOU for taking the time to follow along and encourage us. We appreciate you all so very much.
Oh I am so glad that she is interested and liking solid food!
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