Doctor Day Update

On our way home last night, we could see lightning in the clouds around us. I kept remembering in Boston when the geneticist mentioned that "apparently, lightning strikes twice" in regards to our children and their medical issues.

Yesterday's appointments were... good, grueling, difficult, gut wrenching, humorous, difficult to describe.

Will- did great with his Cookie for his prosthetics alignment. He came home with new stubbies which he LOVES! We are so thankful as his legs & feet have been hurting him so bad & for the first time in probably 6 weeks, he did not complain last night about hurting! (Stubbies are like prosthetics but without feet & shorter so actually cooler. Good for summer. His new prosthetics won't be ready for a few more weeks.) Happy boy =happy mommy

Ellie (& me)- cardiologist appointment went well. I really liked this pediatric cardiologist. She did find more masses in Ellie's heart but we don't think they are new - just old masses that haven't been visible until now. They are in odd locations - very atypical for masses, apparently. They are still not impeding structure or function of the heart! She does not believe Ellie will require surgery anytime soon - just an EKG & echo shortly after birth & then periodic follow-ups through her childhood to make sure they don't weaken the heart muscle. I was very relieved by this appointment and felt very comfortable with this cardiologist. She will be Ellie's treating cardiologist at birth as well.

Everything else- up in the air. I don't want to give too many details as nothing is confirmed at this point. The perinatolgoist suggested something from a gut feeling yesterday based on what he was seeing in Ells. We ran more tests but won't have results until sometime next week. It's not an infection but it is some sort of disease. It is possible to live with it but it is progressive & can severely affect quality of life (if begun as a child.) Depending on the type one has, it can be lethal (though one can live for months with it.) Often, complications associated with it can be fatal (regardless of type.) It definitely affects quality of life for an infant - although not always immediately at birth. It is systemic - meaning it affects lots of organs & joints, etc. This was a new possibility - not something I had heard at all in previous appointments.

I will undergo yet another fetal mri - in maybe 2-3 weeks. This will be done in Dallas with the chief neurosurgeon at Children's Hospital.

If Ellie has this disease, there is a drug I could take inutero. It does not cure the disease but it can prolong life a bit. When babies are diagnosed at birth, they are always given this drug. It is being tested inutero but our doctor believes it is effective inutero. That is why we are willing to continue undergoing more testing - we want to give Ellie the best possible chances of survival & quality of life so the more information we have to help us diagnose and treat her as soon as she is born (or before) will help us towards our goal.

Our doctor (Dr. M.) is a Christian & said he is already praying for Ellie. I so appreciate that & his compassion for our daughter & our family. He will get our same OB that delivered Will (Dr. G. - whom we loved!)- to deliver Ellie. He assured me he would do everything in his power to make our delivery setting comfortable & compassionate. I am so thankful for someone else to coordinate all of that!

Please pray for miracles and for our hearts. I am really, really, struggling right now to breathe.

On our flight last night (which was delayed an hour- landed at home at 10pm - with a 2 year old- yikes!) the flight attendant noticed me crying & holding my belly. She asked me if the baby was active in the air. I fought back tears as I said no, she did move once, but she is very sick & had spent much of the day in a hospital. I really, really, hate this. I feel like I am crashing all over again.