1/31 Anatomy Ultrasound

Even though the last 4 weeks have been so hard to sit through and just  wait for Annelise to grow so we can find out what’s going on with her, today I was grateful to have had that time to wrestle with my faith, my feelings, and get more information about what to possibly expect from this ultrasound.  Spending time in self-reflection, praying and leaning on loved ones, learning about so many other families with T18 babies and their stories, have made this a month of struggle, grief, hope, joy, comfort... and then repeat and repeat again it seems like.

I love feelings, and I have a lot of them... often times they come spilling out of my eyes whether I like it or not, they tell me to flip out because this is all too much, the good ones get overwhelmed at the grace and goodness of God that I can see on top of all the feelings of sadness and broken expectations in our current situation.  Today on the way to the ultrasound appointment, there was a calmness in my body that I am sure was a result of so many people praying for peace for Kevin and me.  I like to think that I have control over my own self, but in big situations, when big feelings are involved, it’s hard. So when I count my blessings, I’ll include being able to be present at the ultrasound, and being ready to take in information that would have been shocking on top of just being painful to hear.

The ultrasound went on for a little over an hour, and the hits just kept coming. The feelings are hard to even make sense of at this time.  It turns out that Annelise does have full Trisomy 18.  The list of “wrongs” range from club feet, clenched fists, cleft lip, choroid plexus cysts in her brain, to a hole in her heart and spina bifida.  I’m overall happy with the care we’re getting from the doctor we’re seeing.  There was a new doctor today just there to check out my ultrasound who was pleasant and informative enough, but I’m still not sure how my brain wants to respond to dr. telling us that “times are changing” so now more doctors are willing to perform heart surgeries on babies with T18 where in the past they weren’t.... am I supposed to respond with “oh good!?”   I’m just so thankful for data and research that shows interventions to repair these babies’ hearts has been met with positive outcomes.  I think it’s very logical that if a baby isn’t expected to survive a surgery, it doesn’t need to be done... but it seems as though the history of T18 in the past is that the surgeries were not seriously considered because the chances of survival were so low... but then it was a self fulfilling prophecy because the chances of survival were so low because nobody was willing to try an invasive but potentially lifesaving surgery.  Seems a slow trend now with the advances in medicine, surgeons are starting to look past the previous data of less than 10% of babies born with T18 living past their first birthday, and now they are making new data that shows improved quality of life after surgeries.  I’ve read some pretty disheartening experiences of parents of babies who has T18 and were made to feel like their kid was just a lost cause.  Some families had to go searching for a surgeon who would be willing to work on a baby with Trisomy 18, and when they found one and the baby had the surgery, it was a success story.  I know the internet is generally full of best or worst case scenarios... but I just want to make sure if our kid could benefit from a surgery, she won’t be denied solely based on a diagnosis of T18.  My doctor said that the hospital we’re planning to deliver at, Long Beach Memorial, has performed surgeries to correct heart issues for babies like Annelise. 

We’ll go back for another ultrasound on 2/21, and then in March our doctor will present Annelise’s case to a team at the hospital, and as we get closer to delivery (hopefully as close to 4th of July as possible!) we’ll get a tour of the NICU and get to meet with any surgeons that have agreed to provide surgeries to Annelise.  She may or may not be eligible for surgery, based on her gestational age at birth, how small she may be, and how her lungs are performing.  Lots of heavy decisions, birth plans and plan B’s to be determined in the coming months.

So those are the happenings of today.  Although I don’t want to overlook an amazing part of today’s story that sadly gets overshadowed by all of the other news.  Listen to this people!! The omphalocele, the thing that was visible on the last ultrasound and showed her intestines didn’t fully make it into her body... the reason that our regular OB said go ahead and transfer care to a high risk OB because that will definitely be a surgery after birth... the doctor that looked at my ultrasound today said that her guts look like they are actually all in the right location!  He thinks the little part of her umbilical cord that looks big might be just a cyst that will get lopped off after birth and be gone for good!  I had spent some time in the past month imagining what it would feel like for the doctor to say the omphalocele is gone... and that’s what he said today!  I’m not able to jump as high for joy because of the weight of the other things going on with her, but that’s one less surgery for her to have.  

I hope this post makes sense and actually conveys information.  I’m pretty exhausted from the day.  Kevin took the day off work and it was so good to have that time with him.  

I’m letting myself struggle with the fears and anxieties.  I am confident that the Lord’s love is bigger than all of the feelings I can bring to Him, and I know that He isn’t done working in our lives or Annelise’s.  This road is a rough one, but I trust in the promise that God won’t leave us.