Dallas Tests & Waco Shower

Some good news!
We traveled to Dallas last week for several appointments & tests with various specialists. The fetal mri was very difficult on me (& therefore on Reagan as I became very irritable & uncomfortable after 52 minutes on my back in a heated tunnel!) However, the results were really good - our baby's brain looks "beautiful" (doctor's words!) & lungs are developed perfectly. The baby continues to measure big - I'm 31 weeks, the baby measures 33 weeks. There are 50 possible diagnosises & the doctors have narrowed it down to 2. They have said that what we have is an extremely rare form of one of those two & it will be a very long time before they can confirm it. The good news? Each of the possible diagnosises tends to not have any cognitive damage & each tends to be sporadic (meaning we aren't carriers- this just happened.) We also had a fetal echochardiogram. The doctor was fascinated with our baby's heart & repeatedly said, "gorgeous" & "wow." (As a mom, I felt so proud!) We were told our baby has a very "photogenic heart." There are no problems that she could tell with the baby's heart! Thanks, God! She also told us "congratulations" as we were leaving the clinic- I broke down! It was the first doctor in 2 weeks that had said "congratulations" to us rather than, "I'm sorry." It was a good reminder- we are having a baby & that is worth celebrating! We also met with the pernatalogist who will deliver our baby should we choose to deliver in Dallas. He was great & really addressed the emotional aspects of this. Reagan says it was a "victory" day. It was good to get such great news on our baby's internal organs. It is still hard to hear that the hands and feet are not what we had imagined or originally prayed for. There are still so many unknowns & scary possiblities that may be in store for us. But, it is good to know that we can relax about the brain & heart.
On Friday, we went to Texas Scottish Rite Hospital for Children. (see link on left) WOW! It was amazing!!! It was the best day I've had in 2 weeks! We were given a tour by two child life specialists & we were blown away every step we took. There were two rules created by the founders in 1921- it must always smell like popcorn (rather than a hospital) & could never be more than 4 stories tall so that it doesn't intimidate children. So, it smells like a carnival all the time - popcorn pops 24 hrs a day & they've built floors underground so that it doesn't look so big & scary from outside! Every hallway has a theme (wild west, space, a-z, olympics, etc.) The halls & floors are colorful. There is a separate interior corridor for doctors so that kids don't have to see scary white coats all the time. We got to see the prosthetics lab (they make all their own prosthetics.) Wow! Feet & hands all over the place! And after about 20 minutes of checking out various types of feet, I asked if our child can swim with prosthetics. The man suddenly said, "I do." I had no idea he had a prosthetic leg! He showed us his leg & explained it was still squeaking a bit from a trip to Schlitterbahn. He then said he has 5 kids & 9 feet! He was wonderful & had been a patient himself as a child. They are truly artists with what they can create for our kids! We got to meet with a physical therapist who assured us our child will go through all the same milestones as any other kid - just maybe a little differently. We will get to go to "hand camp" in Central Texas with our family- any siblings, us, and our child will all go from when our kid is age 4 - age 9. It is for kids with hand differences. I cried again- what a blessing - there's a summer camp for our kiddo! They don't believe in having crinkly paper on the exam beds- they have colorful fabric. We met a man on an elevator whose whole job is to create sports equipment for kids with hands & feet differences so that they can participate in whatever sport they want with "normal" kids! So, we want to play soccer- we go to him! Any sport at all - what a creative job! Every detail is covered! When our kid is a teenager, they will go skiing. They take the prosthetic patients to Winter Park every winter with the chief of staff & other surgeons. No parents are allowed!!! And they create modified skiis & snowboards for the kids. So, our kid will go skiing with mom, dad, & Uncle Adam. Then they'll probably go on their youth group ski trip. Then, they'll get to go with their hand & feet friends! Wow! I can't even describe just how incredible this place is. If you're ever in the Dallas area, stop by for a tour - it's fantastic! And you can always come see us when we are there in waiting rooms - you'll be amazed too! And- it's all free of charge to patients! WOW!!! WOW!!! WOW!!! I told Reagan it is the first place I've felt "safe" since all of this began. I knew no one would say anything insensitive or hurtful to us - I could let my guard down. And I knew no one would make fun of my child. Rather, they were excited to meet him or her! They love our baby already! I told them we're ready to have the baby now & move on in!
The White Rock Marathon supports the TSRHC. I'm brainstorming now about organizing a huge group to support our baby & support this hospital. I've created a website (see left) but will get more information later on how you can join our team. I envision lots of green t-shirts (& a onesie) with our baby's name on it & people running/walking/pushing the stroller in support of our baby & this hospital. Maybe a huge afterparty to celebrate & a big group tour of the hospital. And someday, my child will cross the finish line on their own two (plastic) feet- if they want to be a runner like mommy & cookie. And I can't wait to be by their side & cheer them on!

We also had our first shower this weekend. It was in Waco. It was so good to be a "normal" pregnant woman for a few hours- away from doctors & research, etc. And our baby got so much fun stuff- I've already started playing in the nursery! That too is so fun - just celebrating that we are having a baby & I want their room to be perfect when they get here!