still hanging in bean town….
I just returned from another trip to Boston. This time I was fortunate enough to have my best travel buddy and college roomie Laura meet me in town. Minus hanging out in the hospital for periods of time, it was almost like our days of European adventure. The city is much more fun with a friend! We walked the harbor, took in St. Anthony’s Festival in Little Italy, watched a free movie at the Half-Shell followed by a drink at Cheers. It was almost like being a tourist for once!
Medically, Lydia is doing pretty well at the moment. She is getting all her feeds in her GJ tube and is off the TPN/ Lipids. She is struggling with weight gain and hovers around 11 pounds with various weight gains and losses depending on her fluids and diuretics. She is cutting 2 teeth: a bottom central incision and a fang on top. Of course she wouldn’t follow the baby book with anything. She was a bit grumpy over the weekend from her teething and really enjoyed ice-cold sponges on her gums. She is also able to be off her nasal cannula for periods of time. She’ll be off for about 8 hours or so and then need it again since she has to start working harder to breathe. All in all, progress is slow but we have seen some.
Surgically, we are in a holding and waiting pattern before the next round. Dr. Jennings wants to wait on Dr. Foker (who developed the esophagus growth procedure) to come out and assist him with the next surgery to put her esophagus back on traction. Dr. Foker is waiting on licensure for MA to come through. And Lydia is waiting patiently in the NICU in Boston to come back to Missouri and be home with a functioning esophagus. We are tired and weary of this journey and want it to be a distant memory but we have no choice but to wait for the next surgery round (hopefully this month) and hope this time it will be a success.
Thank you for all the ongoing love, support and prayers for Lydia and our family during this trying year.
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