Thursday, September 10, 2020

I'm a Little Pencil in the Hand of a Writing God...

...sending a love letter to the world. - Saint Teresa of Calcutta

I'm going to start sharing more of Agnes's story here as a way to document her/our journey and to keep those interested updated.

Where to begin?

Many have asked if we knew anything was "wrong" in utero.  The answer is no.  Of course, she had a two-vessel umbilical cord, and I had polyhydramnios, but they don't know if either are connected to her health issues.

When she arrived, the nursery nurse cleaning her up commented on the big bruise she had down her left leg and another issue of concern.  Jeremy and I didn't think a whole lot of it, until our pediatrician made rounds that evening to examine Agnes.

She came to our room with a little heaviness unlike her and said, "I know you're very concerned about the vascular malformation on Agnes's leg."  We weren't.  We just thought it was a bruise.  Then she mentioned it was the biggest she had seen, and there were other urological issues she noticed.  She then said she was going to spend the evening doing some research.  And she did, the entire night (we love her!).

The next morning she ordered many tests.  She wanted to check her major organs, her bladder and intestines, and run some bloodwork.  It seemed for those two days, with each new discovery more tests were run.  We left the hospital knowing this:  Agnes has a very large vascular malformation/hemangioma spanning from her bottom to the bottom of her left foot.  She has a few complications with urology.  Her spinal cord is tethered.  Her left hip is a bit underdeveloped.  Where she has a bowel movement is too small.  And a couple of other things.

Our pediatrician also mentioned the possibility of her having LUMBAR syndrome...a very rare syndrome - less than one in a million.  In fact, in the medical journals I've read, it says there there 55 known cases since 1986.  We knew leaving the hospital that a full body MRI could reveal more issues but that her heart, brain, spleen, liver and other organs looked great - praise the Lord!

We were to be referred to Dallas Children's for a consult with a medical team. And, I began to research.

In researching, the few articles/journals that discuss LUMBAR pointed to a few main doctors leading the research.  In another post, I'll share how we discovered those doctors were at Texas Children's in we began communicating with them in hopes of going to Houston instead of Dallas.  

During the first year of life, the vascular malformation/hemangioma proliferates at an exponential rate and can begin to ulcerate.  In order to slow this growth, Agnes needed to be put on a blood pressure medicine which has a side effect of slowing the growth of infantile hemangiomas.  In the first few weeks, it started to grow and begin to ulcerate, so I felt it was imperative that she was seen soon.  

Going back and forth with Houston (Dallas wasn't very responsive), we set up an appointment with a team there for mid-September.  Om Tuesday, the 8th, they called saying a team in Denver could see Agnes the next morning, so we packed our bags and drove there that evening.


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