In the midst of a new address, a new job and new everything, one thing hasn't changed: our need for prayer and God's mercy over Elizabeth's health. By far the most complicated component to our move has been getting Elizabeth up and running with an entirely new set of doctors. She needs a lot of specialists! Fortunately, as a result of Matt's academic career, we've been at some amazing Children's Hospitals, and Children's Hospital of New York is no different.
The blessing and the curse of a new set of eyes on our sweet girl is that no one is content with what had come to be considered her "baseline", so we're running tests and investigating symptoms afresh. That has meant more appointments, pricks and tests, and we're once again amazed at Elizabeth's courage and steadiness through it all.
Recently, her echocardiogram revealed that the right side of her heart is mildly enlarged and would indicate that it's having to work too hard to pump blood into her lungs. The only way to determine if she truly does have pulmonary hypertension is to do a heart cauterization under anesthesia and measure the pressures in each chamber. If she has PH she will need medication and special considerations whenever she's under anesthesia. The link between portal hypertension (increased blood pressure due to the clot in her liver) and pulmonary hypertension in children is a more recent discovery and she was only screened for it because CHONY has recently set up a protocol for when a 10 year old comes in with portal hypertension!
Elizabeth's heart cath is scheduled for tomorrow, Feb. 25th, and because her Dr. Daddy is on the case, he advocated to have a necessary liver biopsy done at the same time (one fewer trips to dreamland!) Her liver biopsy will help determine if, after years of regular endoscopies, Elizabeth is a good candidate for a liver transplant (another case of a "new set of eyes and a new plan"). So would you pray for our dear girl? She's the first case so we're scheduled to arrive first thing tomorrow morning. Grandma Harms has leaped to the rescue and will fly in today to stay with Ruby and Hannah and help us to manage any surprises.
With all the fun adventures and exciting changes, it's easy--even for us--to forget Elizabeth remains in rather fragile health. She bears is with courage and grace so sometimes we don't fully grasp how many things she has going on. But this one feels big and slightly overwhelming, as He has so many times before, we need God to sustain our family and carry our little one through.
Thank you for your prayers! We'll keep you posted!
Matt & Sara