Omaha Day 2

Day #2 of appointments in Omaha was filled with more stressors than day one.  It started off nicely with an anatomy scan where we got to see Annelise’s sweet profile and a pretty good 3D shot of her face, and her little cleft lip on the right side of her face (we MIGHT be able to find out if she has a cleft palate also with the results of the fetal MRI... or we might just have to wait and get that info when she’s born).  The maternal fetal medicine (MFM) specialist we met with to discuss the results of the scan echoed the physical issues that we already know about, plus added a larger degree of concern regarding her continued small head size.  Her head growth is a week further behind in growth than the rest of her body, which is 2 weeks behind typical growth already... almost qualifying her for a diagnosis of microcephaly, according to the MFM.  This would mean that we can expect even more developmental and cognitive delays than we were already being prepared for because of the trisomy 18 diagnosis.  With the added possibility of neurological issues like seizures.  She thinks there may be some “cord tethering” in her spine, which I don’t know much about except that it’s an issue in addition to the Spina Bifida.  I can’t think of a good describing word other than just plain sad when describing Kevin and my response to thinking of our baby’s brain not working for her, and possibly bringing a host of neurological issues that we haven’t even thought of yet, on top of the realistic prognosis that we’ve already been overwhelmed with.  I was floating on the edge of all my emotions on the walk back to the car after the appointment.  We walked up the stairs of the parking garage, and the door slammed behind us super loudly.  We both jumped and I started laughing at us... which gave way to tears and sobs that made it hard to catch my breath.
I’m infinitely thankful for the amazing husband I have who is right there with me during these moments when I can feel my heart breaking for our girl, and for our family.  We sat in the car and just expressed to God our inability to understand what He’s doing in this situation, and just lamenting our sadness in it all.  The Lord in the way only He can provide, somehow provided some comfort and peace as we recognized that this new detailed concern about her brain is not a surprise to Him.  He showed up to the appointment with us today as our comforter, He didn’t need to wait for ultrasound results, He is still the one in charge of making Annelise, and she is still the Lord’s before she is ours.  New challenges won’t change our view of the value of her life, and the desire to get her the best medical attention that we can get for her!  Plus, how many times have you heard somebody tell their story that starts out “the doctors thought he/she would never.... but just look at them now!”  Even with a serious opinion about what might happen, we really will not know what Annelise can do until she’s here and trying to do it.
The second meeting was with a neonatologist from the hospital.  She wanted to meet with us to find out what information we already knew about Annelise’s condition, what we knew about possible outcomes, and a general overview of the hospital’s trisomy team and some of the things we can expect if we choose to deliver at Children’s Omaha.  She was a direct but upbeat person, and another moment where I am just so thankful and impressed with these folks that are clearly living their passion.
The afternoon ended with my first MRI experience.  I chose to watch the movie “Cool Runnings” while I was in there.  They explained everything before they did it and I felt pretty relaxed with it all up until the moment when I went into the tube and that little voice inside my brain that has been so obnoxious lately whispers “I wonder if I’m claustrophobic.... it would be pretty bad to be claustrophobic right now because I can’t move... like even if I wanted to move I could not... what would a panic attack look like in an MRI machine?  How embarrassing would it be if I can’t calm down and they can’t get these pictures of Annelise because I’m freaking out... I feel like freaking out...”. The techs came over the speaker and asked how I was doing so I told them I was feeling anxious but I want to try and power through.  One of them offered me a button to hold that I can squeeze to communicate with them and let them know if I need something... and as soon as I had that piece of control over my communication... I could calm down.  Brains are weird man.  I never even used the button and got through it!
We were blessed with dinner funds from some of our friends at home (thank you!!), and after taking a walk in the very green park we found, had a really delicious Thai food dinner at a restaurant recommended by the amazing woman who coordinated our whole weekend for us.
I then ate my feelings in the form of Starburst sour jelly beans, on sale at Target, and am feeling the sugar crash now.  Kevin and I have spent the evening trying to relax from the day so we can be ready for tomorrow’s meetings and travel home!  I can’t wait to sleep in our own bed with my giant pregnancy pillow!
Thank you everyone for your prayers, loving texts, and just loving us through this season of unknown.  We feel really cared for by our people!
I’m continuing to pray for baby Annelise to be shockingly healthy, and for Kevin and I as her parents to be able to entrust her future to the Lord, and look for God’s plan for our family above and beyond our own.
Love this little girl!