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.  

The New High Risk OB

Kevin and I went to meet the new high risk OB that we transferred care to yesterday.  I’m so thankful that Kevin was able to take some time off of work to meet the doctor with me.  At the beginning of the pregnancy, we were just going to have him take off work for the “big” appointments with ultrasounds and fun stuff... but now, with so many unknowns about Annelise’s future well-being, and the scary reality that many babies with Trisomy 18 die in the womb, I need him there physically next to me for the moments when the doctor is checking for her heartbeat.  The great news is that she’s in there with her beautiful little heart beating away! 💗

I didn’t have any idea who my new OB would be.  The office had put me on hold a couple of times to try and work out an appointment time for me, and let me know they were making accommodations for me in the schedule since I had already been a patient at the office for the genetic counselor and nuchal translucency ultrasound.  I didn’t ask for any details, I was just glad to have an appointment scheduled quickly.  I didn’t think too much about who the OB would be, I had chosen the first OB blindly, solely based on their availability and willingness to get an early ultrasound before Thanksgiving so we could tell our family the good news that we’re expecting!
When the new OB walked in, I immediately recognized that I did in fact have expectations about who    a high risk OB is.... in my head, I expected an older man, or a female doctor.  But the young guy who walked in looking like he buys his clothes exclusively at the men's Express store, is in fact, the new high risk OB assigned to us and Annelise!  Have y’all watched Friends?  Do you remember that episode where Phoebe is trying to find a new doctor to deliver her babies because she doesn’t like the one weird doc who is obsessed with the Fonz?  The first impression with Dr. Day reminded me of that!😆



I needed a minute to get my mind wrapped around how I felt about having a young doctor, which means relatively new to the field, and without the life experience that an older doctor would have... I know I'm much more comfortable with women doctors... but I've never had an uncomfortable experience with a male doctor, because I've only happened to have women doctors in my adult life.  So my uncomfortableness is all in my head.  So I recognized that at this point, I know nothing about this doctor that would make up an actual reason to not see him.  I did what I always do when I get a little nervous and just started talking and talking.  I explained that he's not what I expected and it's taking some time to get used to so I just wanted to be upfront, but that I also recognize that any issues I have are about my expectations, and not about him as a professional.  He was kind and smiled and did not say too much about the issue, other than that I may ask to change doctors at any time.  But of course switching without having a real problem with him would make me feel like a giant turd.  So we moved on with the meeting!
He took a medical history, and told us what we already know about the statistics and Trisomy 18.  The reason that I think we will stay with him as a doctor is that right now, I don't know how he personally feels about parents carrying Trisomy 18 babies to term and giving them a chance at life.  (Just to clarify on the diagnosis, he stated that with the screening, plus the Omphalocele birth defect, they are expecting her to have full Trisomy 18... but she still hasn't been genetically diagnosed by her own chromosomes, just the chromosomes from the placenta).  I've read a bunch of blogs from parents of Trisomy 18 babies.  The blog stories range from worst to best case scenario, but so many of them felt pressured to have someone get rid of their babies before their babies' lives quit on their own... or DIDN'T quit in some amazing cases when they were carried to term, where the kids are 3 or 4-years-old today!  I really enjoy that our new doctor asked us what our goals are for this pregnancy, and when we explained that we understand the statistics, but also want to see what THIS baby girl will do, and what life THIS baby girl will have.  We understand that the medical professionals that have asked us if we would like to continue with the pregnancy are asking from a place they think is helpful.... but that is a silly question to us that we would like to never have to respond to again.  The doctor nodded his head while listening, and then said "ok, then let's talk about how we're going to care for this pregnancy".  And then after we finished talking, he offered to do a last minute surprise ultrasound.  This guy is good at building rapport!  In that instant, he was my favorite doctor!  Annelise was facing her butt toward the "camera".  So of course we'll have to wait another week until the 1/31, 10am ultrasound to see how her hands and feet are looking.  Babies with Trisomy 18 often have clenched fists and clubbed feet. 
I know now more than ever that God is doing and will continue to do big things through my daughter Annelise's life.  Our community of family and friends have been amazingly supportive just by stepping into what they know will not likely be a rainbow and sunshine conversation when they ask how we are doing.  Or just text a heart so we know we're being thought of.  Or send the link to an encouraging song that helps remind us we are not alone for a second.  It has been and incredible show of what Jesus' love can do through his people, even in the midst of their busy lives.  I didn't get the jitters before the last doctor's appointment and I'm sure it had to do with all the praying that is going on for this sweet girl's life in utero.  I'm becoming a new person just by getting used to not being able to tell the future.  Not that I ever could at all... but I spent the last 8 years at a job learning how to predict behavior of children and uncover reasons for their behavior.  Now I'm immersed in a situation as meaningful as my firstborn child, and I can't predict what will happen, nor do I know why this is all happening in such a crazy way.  After I work myself into a frenzy with all of the information I gather about expected outcomes, it's nice to wind down and recognize that this daughter of ours belongs first to the Lord, and next she belongs to us.  I'm fervently at his feet letting him know how much we want to love here here and see her grow.  I love to recognize that I was made on purpose, and as much as I love my unborn baby girl, God has a love for me as his daughter that is unfathomable, and I can find rest in that love during this season.

1/10/19 Another OB Appointment

I've got an OB appointment scheduled later today at 4:20.  Kevin went in to work super early today so he could take off early and come with me.  I've been spending most of the day recognizing how the anxious thoughts that come across my brain are shouting an alarm to the rest of my body that "this visit is a big deal!  time to freak out!"  I've only recently been able to put words to what's happening during super big emotional situations.  Previously, I just accepted the message from my brain, and proceeded to freak out!  After some years of learning about anxiety in adults and kids, I feel so grateful to have this self awareness.  I've discovered that a good way to combat the freak out feelings in this season for me is to listen to worship music, and focus on the words and truths that comfort me.  I'll share my playlist for the day, and later give an update on anything we find out from the visit.

This song is new to me, and I love it because it reminds me that I don't need to quickly move through this season of unknown to get to the nice and tidy end of the story where I have everything under control again and don't need anything from anyone.  I do need practice sitting in the messy feelings, and being okay with not being okay, because the struggle brings unexpected joy, deepened relationships, and things I don't even know that I'll be thankful to have experienced later.

 This song speaks my gardening language.  Since moving in to our own house with a backyard, I've found out that I do actually have the ability to keep plants alive!  I often come in from gardening with some deep philosophical thoughts about gardening metaphors and analogies for life.  One thought that fits with this song is just how long these plants can take to mature.  Not all of them, but I've had to finally accept that I need to just leave the bearded iris in the ground and wait.  I would plant and re-pot them, thinking that they needed different soil, more sun, a different spot... they are so small... I am told by experienced plant people that I just haven't left them for long enough yet, so now I just wait for them to grow and establish.  Some of my favorite lyrics here are "oh how nature acquaints us with the nature of patience", and "For all I know of seasons is that You take Your time, You could have saved us in a second, instead you sent a child".  Along the same lines as the song above, this isn't supposed to be a quick fix, slow down me, and get established.

When I need a perspective shift this has been so useful when I feel myself getting overwhelmed with "what-if's" .  I'd rather be overwhelmed with how great knowing the Lord has already been, and that He continues to be good, great, amazing regardless of the circumstance that feels too big for me right now.
UPDATE on OB appointment:
Today was not a day for an ultrasound, but we did get to hear Annelise's heart beating loud and strong on the monitor!  The day has been made!  We talked with the OB about when to transfer to a high risk OB, and she recommended now as a good time, since we already know of one birth defect, the omphalocele, where her intestines aren't in her body where they should be by now.  When we said goodbye, I asked if I could give the OB a hug, it just felt like a good thing to do, even though I have only met her 4 times in my life, we had an unforgettable conversation finding out about extra chromosomes in my placenta and possibly baby girl too... she's a stranger I'll never forget.  She told us that we're in her thoughts, and although she can't tell us that they're praying for us, they're praying for us.  I love that.  So now we just wait until the January 31st appointment.  Kevin and I celebrated heartbeat day by eating ramen for the first time.  We opted for no egg in the ramen, since Kevin doesn't like runny eggs and the internet wasn't confident enough in the ramen eggs being on the list of food for pregnant people to eat for me to go for it. Two thumbs up though for the eggless ramen!

14 Week Ultrasound and Genetic Counselor Meeting

 
We got to see Annelise today in an ultrasound!  We met first with a genetic counselor, who was just the sweetest lady.  She put things in "real people terms" and gave us some other statistics that showed the likelihood of Trisomy 18 being in the baby's blood versus just the placenta, which is where they got the extra chromosome reading.  I don't pretend to understand all the science, but the different statistics looked more like 57% probability that her chromosomes have an extra 18.  This is not a math game though... so we'll just stop guessing and wait for more ultrasounds to see how she grows.  We denied the CVS and Amnio tests because they carry a small risk of miscarriage.  I have decided that at this point, in any future pregnancies I might have, I won't want to get this blood screening test done again!  If it's not going to change anything for us, but it also can't tell us anything definitive except the sex of the baby, then next time I will just have patience and wait to find out if it's a boy or a girl!
    The ultrasound tech and doctor found that her nuchal translucency measurement was within the normal range.  A thicker measurement would have indicated red flags for a chromosomal abnormality.  That's the good news!  They did find some red flags with her development as far as a gut herniation that didn't "fix itself", where her intestines remained in the umbilical cord, when they should have finished migrating back into her body by last week.  That can occur in other babies too, but babies with this birth defect have an increased risk for chromosomal abnormalities.  At this point she is too small to determine any issues with her other organs.  They noted that her chin does seem small, but that more time will need to pass before they can determine if her jaw bone growth is stunted or not.
    That's where we're at right now.  Waiting for the next ultrasound on 1/31/19 at 10am.

I love it when a songwriter basically writes my feelings because they were the songwriters feelings at one point.  Here is my current favorite, written by Matt Hammitt, who had a son who beat the odds and survived with a heart that wasn't fully developed.