This has been a full week. (aren't they all?) Monday all 3 kids went with me to Kara's 2 month appointment. The doctor felt that her liver was enlarged, or at least more "hard" (not squishy) than normal, so we scheduled an ultrasound for Kara at Children's. At this point in our journey, it's just "one more thing", we were going to Children's twice this week anyway... we are expecting everything to come back normal, but we'll know for sure next week. In the meanwhile, though, Kara has been a little extra fussy so Jeremy and I wonder "are her innards squished because of her large liver?" Thoughts that never would have entered our mind. So we continue to ask God to help us to think on what is TRUE and not worry or be anxious about things that are maybe (but to be wise with our child's health, of course).
Thursday we had the ultrasound at 4:30 (Jeremy was able to be there also) and then went straight to the Children's expansion fundraiser. The timing was awesome (thanks, God!) We enjoyed some mingling, and we were given 10 minutes to share Kara's story. We were honored to have the opportunity, we were 1 of only 4 speakers at the event. We were given much grace and did not "um" or "uh", and I did not turn bright red. So thankful! We did bring Kara, and she was great. She was tired and is almost growing out of the "sleeping on Mommy" phase, but she did well and many people thanked us for sharing and doted on Kara. Children like her are why they are such generous supporters of Children's. We were privileged to meet the head of the NICU, the CEO of Children's, and got to catch up with the head of General Surgery (in charge of Kara's continued care). He gave us a little info about the pulmonary department, and spoke especially highly of the pulmonary dietician.
Friday we met with the pulmonologist (lung Doc) about Kara. He had a good knowledge of her history. He recommended with get another ECHO within the month to make sure her pulmonary hypertension has resolved, and we are getting a fluoriscopic swallowing study in the next few weeks (I hope I said that correctly). It's basically an x-ray imaging to tell how she is swallowing. With her condition, it is possible that she's aspirating (getting fluid in her lungs due to uncoordinated swallowing). The last thing we want is to in any way make it more difficult on her lungs. The pulmonologist assured us that "yes" her lung development was compromised in utero. Her lungs are definitely smaller and possibly less "functional" (for lack of better words) than "normal". However, from here on out, they should develop normally so our goal is good growth. Jeremy and I have goals that we are balancing. Previously our highest goal was getting her off the NG tube. Now it is to not "push" her too much and to promote good growth (meaning possibly not waking her up to bottle feed during the day?? We don't know what this will look like, but it's causing us to re-evaluate what we do). The good news is that we are going to relax a lot more about how much she's taking by mouth and be thankful that she can get the calories she needs to grow well by mouth or through her tube.
We then met with the dietician who is awesome. She said Kara's growth has been great and she's on exactly the right amount of "calories per kilo". Which is a relief. We have been monitoring her growth at home and adjusting her "volume" and "fortification" (extra formula added) and apparently have done a good job... phew! If we would have followed their advice to a "T" she would have gained way too much weight. We will continue to have access to the dietician's expertise until Kara is off the tube and in charge of her own caloric intake.
We have, by God's grace, just taken one step at a time in this journey. We felt like "a few months after surgery" we would be done. However, it is more probable that Kara's lungs will affect her ability to do normal things until age 6 or beyond, and so we adjust our expectations and are thankful for God's grace in giving us the information we need, when we need it.
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