The first two appointments

Eleanor Mae was doing good today on our Wednesday check-up.  We were supposed to just check her heartbeat with the small handheld machine, but Andrea found me in the waiting room and told me to get back there and see my baby.  It was so good to see her moving and kicking and get to feel it at the same time.  Even though they didn’t measure this week, she seems to be growing by the size of my belly and the strength of her kicks.  Hoping and praying for another week.

 

I wanted to write about the two different maternal fetal doctors we saw and what those appointments looked like for us.  They were such different experiences and I want women to know that if they are ever in a similar situation that they need to find a doctor that is a good match for them.  I know a lot of my friends who would need to see a doctor who was all business and straight to the point like my first appointment and I have lots of friends who would need a doctor that would also express empathy and offer prayer.

 

For the first appointment, we were seen the following afternoon due to the areas of concern seen at my 20 week anatomy scan (measuring small and two spots on her heart).  David and I met at the maternal fetal office at 3:00 for our 3:15 appointment.  I don’t think we were called back until about 3:40 so we sat and chatted about our work days, how cute the kids were who were waiting in chairs next to us, and more than likely – what we would eat for dinner.  We were nervous for the ultrasound, but we weren’t panicked.  David and I are both overly optimistic about life in general, we both felt that everything would be OK.  We thought that we might hear that our daughter had downs-syndrome and we were ready for that.  I even let myself dream about what our new life would look like and the joy a downs-syndrome baby could bring (I know that that diagnosis can also bring big scary medical issues and we might face heart surgeries, but it still seemed manageable in my mind).  I had spun all these ideas in our head about how we would be introduced to a whole new community of amazing people if we had a daughter with special needs and knew we were at the right church for support.  There are so many families who have children with special needs at Grace and who have adopted children with special needs, that it didn’t seem overly intimidating.  We never thought that we would hear that our daughter had a fatal chromosomal disorder.

When we were called back to our exam room anxiety fell on us as our sonographer got everything ready.  For forty-five minutes she scanned every part of our baby in almost complete silence.  David said he felt worried that she spent so long on her brain.  When she was all finished she went to talk to the doctor and they both came back in with a genetic counselor for the results.  The sonographer and the doctor sat really close to me.  I was still on the table with my belly exposed so the doctor could also view Eleanor while she explained everything and double-check a few things.  She started off the conversation by talking about my age.  She said, “You are 34, which is basically 35, so your chance of having a baby with a chromosomal disorder is 1 in 350.”  The sonograhper interrupted her at this point to tell her I was 33 for the first half of the pregnancy and had just turned 34 a few weeks ago.  The doctor replied, “still basically 35.” She was a very matter-of-fact type of woman.  She then drew a picture of Eleanor’s brain and talked about her cerebellum and that they saw what looked like a dandy-walker malformation.  She told us that it looked like Eleanor had all four chambers of her heart, but explained that the shape of her heart was globular. Things like micrognathia and hypertelorism were discussed.  She said the bladder never appeared on the screen while she was being scanned and that her hands stayed clenched the entire ultrasound which points to trisomy 18.  I was sobbing by this point and she said, “I’m glad you are crying, you must understand what I’m saying. Babies with trisomy 18 are almost always stillborn.”  She moved her chair over to the genetic counselor and let her speak for a few minutes.   They talked about what type of testing would be best to get the most accurate results for the cause of so many abnormalities.  We declined scheduling an amniostesis and agreed to do the cell-free dna test called a materniT genome test.  She then asked after we found out the results if we knew how we would want to proceed with our pregnancy, informing us that it was not too late to terminate the pregnancy.  I said that we didn’t want to consider that option.  They were all very respectful of that decision and they immediately turned the conversation to celebrating our time with her.  She told a story or two of how other patients in the past had celebrated their time with their child in the womb.  It was nearing 5 o’ clock now and we were some of the last people in the office.  They were considerate, it just all seemed rushed and so very harsh.  They quickly drew my blood and called our ob office to cancel their genetic test that had been ordered the day before.  She was on her phone a lot and kept telling us that she needed to talk to the office today so that she could make sure to save us the 300$ that the other test would cost us if they sent it off.  We could have cared less about the 300$ at that point.  We were so overwhelmed and were just trying to process all the things they had mentioned earlier.  We didn’t understand a lot of the medical terms used and we were told that it is best not to google anything.  The ultrasound report said that the doctor spent a total of 16 minutes with me, 50% of that time in face-to-face conversation.  It was crazy how quickly the time went by. I felt like we only talked with her for a few minutes and then we were walking outside to find our car.  We had both worked that day and driven to the office separately.  I could barely get my car out of the parking garage.  Thank goodness for an ambulance driver who stopped me from hitting a huge metal pole.  There should definitely be a non-profit organization that funds uber rides home from the hospital when someone has just been given devastating news.  I have never cried that hard before.  I would think about the girls not getting a little sister or having to tell my family and it would wreck me.

It was so good to get home.  Eliza and Lily needed dinner, baths, books, pajamas, and all the normal things.  It was an instant reminder of all that we have to be thankful for and to give God praise for.  I don’t think David and I could eat much that evening and I have no clue what we talked about.  I remember neither of us sleeping much and me crying most of the night.  David took off the next day and kept the girls busy and happy so I could rest/cry.  Eliza Pearl had a fever that day and needed lots of cuddles. I gave her tylenol that night and forced her to still go see the Nutcracker with me because I had bought the tickets weeks ago and she had been so excited.  It was a fun distraction even though she only made it through 20 minutes of the show.  Apparently, the uncle looks like a bad pirate to easily frightened 3 year olds.  On Saturday, I was supposed to help host a baby shower for a best friend who is having twins next month.  My friends let me off the hook for cooking any of the items that I had signed up for and my decorating duties, but I still wanted to go.  It was good to get out of the house and so good to celebrate those twins.  I have a funny story about my sister buying me a dog while I was inside the baby shower and not able to look at my phone, all because I jokingly told her that a puppy might cheer us up right before I walked in.  My sister loves people in such an over-the-top way that she is prone to grand gestures of love.  We did not accept the puppy and she has now added a third dog to her home :).   We had to skip church the next day because Lily had the same fever that Eliza had on Friday.  Eliza and I went to my brother’s gender reveal party where we learned that I am getting a nephew!  It was so crazy that life continued on as normal.  Both of our girls had croup that week.  We still had to grocery shop and wash clothes.  We still went and did all the things we had planned on doing.  However, my home was my refuge that week.  The weight of everything felt so heavy and I could barely make myself eat.  I was on the verge of tears every moment it felt like.  I lost about four pounds that week. Have no fear, the Christmas season allowed me to gain those four little pounds back and then some.  My hair started falling out a ton and has not stopped.  I only share that because so many people have told me they are proud of me for being so strong and carrying on with life, but man did I feel weary and broken that first week.  I also think that if this had been my first pregnancy I would not have been able to carry on with anything.

I can’t imagine anyone getting news like that for their daughter and taking it well. A daughter that they had hoped for, prayed for, and dreamed big dreams for.  It was easy to get mad at the way the appointment went and to want the doctor to be wrong.  We found an ultrasound picture of Eleanor’s hand open and we knew that the tri 18 diagnosis was more than likely wrong.  If the doctor had been wrong about that, couldn’t she be wrong about more?  Maybe our baby’s condition wasn’t quite so severe?  I will always wonder what it would have been like to go see Dr. Greig first.

Fast forward to the next week and to our appointment with Dr. Greig.  The ultrasound went just the same, except the sonographer was a little bit more talkative and friendly.  She made us feel at ease.  The room we were in had this scripture on the wall:

“Before I formed you in the womb, I knew you. Before you were born I set you apart.”

Jeremiah 1:5

After the ultrasound we went into the exam room. David and I were both able to sit in normal chairs, I wasn’t still laying on the ultrasound table like at the other office.  Dr. Greig came in and immediately asked us what our daughter’s name was and referred to her as Eleanor while he discussed her medical condition.  No one was with him, it didn’t feel overwhelming or intimidating.  He also got right to the point and acknowledged everything that had been seen on our previous scan and informed us that he also saw a hole in her heart that wasn’t seen at the other office. He thought the reason that she lagged in growth by almost two weeks was that my placenta wasn’t providing all that she needed to grow as it was also affected by the chromosome deletion.  He told us that in his opinion she only had a 50% chance of surviving two more weeks.  There was no good news. Somehow, he gave us so much peace.   He took away a lot of my fears by explaining that one day I would not feel her kick anymore and I would go into my OB office to confirm that there was no longer a heart beat.  The doctors there would then arrange for my labor to be induced at the hospital.  The whole week before I imagined that I might go into active labor at any moment.  He said he would be more than willing to help point us in the direction of funeral homes who take care of families experiencing infant loss at no charge.  He told me that we could come back in and see Ellie Mae on the ultrasound as often as we wanted at no charge.  He gave me information about compassion grief groups in the community.  He offered to pray for us and he prayed such a sweet prayer over our daughter and family.  Dr. Greig said that he helps women going through all types of high-risk pregnancies, but his mission is to help couples get through the nightmare that we are going through.   We discussed scripture with him.  What does Psalm 139 mean when it says that God knit us together in the womb and that we are fearfully and wonderfully made? Did God intend for Eleanor Mae to have life-threatening heart issues?  Dr. Greig said he had thought about those verses a ton in his career and that while he knows God can receive glory through each life, he also believes things like this happen because we live in a fallen world. Brokenness is all around us everywhere we look and it affects us down to our genetic make-up.  People who want to get pregnant are unable.  Loved ones get cancer.   He reassured David and I that there was nothing we did to cause this to happen and it was something completely out of our control.  I didn’t know I needed to hear that, but I needed to hear it desperately.   We will forever be grateful for Dr. Greig during this time.

 

When I got home to my girls that afternoon on December 8th it was snowing outside. Huge, gorgeous, sticking-to the ground snowflakes!  Snow in December is almost unheard of in South Carolina. My girls were beside themselves with excitement.  David had again taken the rest of the day off work and we quickly dressed them in snow gear and went outside to build snow men, make snow angels, and knock snow off tree limbs just like Peter from Snowy Day.  The girls ran around and squealed like crazy.  Even on that hard day we experienced joy and laughter.  We were reminded that while we are hurting, God will still send blessings through His common grace to all people, gifts like a surprise snow.  A day of grief became sacred.  It was one of those defining moments in this pregnancy where I realized that we have Eleanor Mae here with us for today and celebrate we will.