8.11.16

“What does that mean?” we said, with tears rolling down our cheeks. 

“It means the potential for fetal demise. Your daughter may not survive. It means she may die before she is born or soon after. She may not make it to her first birthday.” said Dr. Becker as she passes the Kleenex box across the table. The crunchy kind of Kleenex made for commercial use. The kind that hurts when you wipe your tears. Nothing like causing physical pain to couple that emotional travesty. Thanks paper making companies for taking away those extra layers when they are needed most (I’m looking at you too toilet paper.)

It was August 2016 in Houston - so it was 156 degrees. We had learned that our baby girl would have Down syndrome the month prior. Since about 50% of people born with Ds have heart defects, it is common practice to visit a cardiologist in advance of delivery.

I remember lying on the table while the ultrasound technician did a fetal ultrasound of our babies’ heart. Brad holding my hand, me making small talk with the tech. Not because I cared what he said but because if I stopped talking I’d have to face my own reality. 

After the tech gets all the necessary images, he walks you to the room where the cardiologist will reveal your babies' fate. We walked into the room and Dr. Becker grabbed the Kleenex box from the top of the cabinet and placed it on the table where we were to sit down. Brad and I looked at each other – we recognized foreshadowing when we saw it.

“Your baby has an enlarged right ventricle and a small left ventricle. There is also a large hole in between all 4 chambers. Typically, we see an AV canal in babies with Ds but your baby has an AVSD that is malaligned to the right." 

“What does that mean?” we said with tears rolling down our cheeks. 

“It means the potential for fetal demise. Your daughter may not survive. It means she may die before she is born or soon after. She may not make it to her first birthday.” said Dr. Becker. “If she does survive, she may have a one ventricle heart. If the left side doesn’t continue to grow and then the right side will be the only functioning ventricle. Her life would be very altered, meaning she may not be able to run and play and she would get tired very easily as a one ventricle heart is not optimal. But we do have some patients in that state and they are able to live their lives just fine.”

We cried. Hard. Harder than we'd cried previously in the pregnancy... and we had already cried a lot at this point. 

Dr. Becker was drawing on a piece of paper with a heart on it as she explained all that was wrong with our daughter's heart. At this moment, Brad went into education mode asking more specific questions and trying to absorb all the medical terminology. I feigned interest and attention but really, I was numb and not listening at all.

We walked out of the hospital in complete silence and shock. Doing our best to act as if we hadn't just heard the most tragic news of our lives; our red and puffy eyes gave it away to every passerby-er. We got into the car, and while I can’t remember when I started crying (again) I clearly remember Brad breaking. He let out a vocal sob with tears flowing freely. He said something to the effect of ‘it’s not fair’ or ‘why?’ but I can’t remember which. Then, quicker than I would've expected, he forced himself to pull it together to drive the three of us and our broken hearts safely home.

I desperately wish I could recall this moment between us better. It’s one of those moments in marriage when you are the only two people in the world who can relate entirely about something so significant to both of your existences.

For me, this news was the final turning point in the pregnancy - I let go. My mind and soul were plagued with worry, night and day. It no longer mattered which prenatal vitamins I used, what/if I ate, how safely I exercised...or if I did at all. Nothing mattered. My baby could die anyway - no amount of folic acid would change her heart. Every time I felt her kick I thought 'could this be the last time?'... 

As an aside, I truly cannot imagine anything more horrific then having to deliver your baby who has died inside of you or a baby that you know will pass away in your arms. My soul agonizes/aches/screams for any mother {and father} who has survived that scene or is working hard to survive it's inevitability.  

It took us a few days to digest our reality. And while we hadn’t done so fully (still haven't) we needed to tell our family and friends. Email is the way Brad and I best handle communication – especially difficult communication. You can use the right words and phrases to adequately express what you need to convey and what you are feeling. When you speak to someone via phone or face-to-face, it doesn’t always come out right. When it comes to matters of the heart (things I care deeply about) I speak about seven, audible words and then violently cry to the point of speech no longer being an option. Below is the email we sent on 8.14.16:

Loving Family and Friends -

We are finding it very hard to speak to all of our feelings and much prefer to write them, same goes for the medical updates. This way we only sob once rather than every time we speak to anyone in the family. That being said we appreciate and need all of your loving texts and voicemail, but do not be offended if we are not finding the strength right now to return them or return them with verbosity.

This past week we have had a lot of Dr's appointments and tests run on Baby Girl. Here is what we have learned:

Around 50% of babies with Down Syndrome have heart defects, we are in this population... but with an additional twist. Baby Girl has a Type "A" Common AV Canal that is malaligned to the right (this last part causing more concern). You all can google this as you wish but basically the wall that separates her Right Ventricle from her Left Ventricle did not fully form. Her right side is bigger than the left (60/40) and we will watch as she hopefully continues to grow and the ratio stays at 60/40. We will be going back for another fetal echo-cardiogram in about a month, when I will be at 30 weeks, to see the development. Around this time, we will also meet with the Pediatric Cardiology Surgery Team to understand more. This malalignment is cause for concern because typically, the surgeons would go in and patch the holes and repair the valves, but with the imbalance there are complications: the LV is responsible for pumping blood back out to the body, and it needs to be big enough and strong enough to do this. If the doctors decide that her LV isn't large enough, they will effectively re-wire the heart into a single-ventricle, so that it provides positive-pressure/outbound pumping only (as opposed to negative-pressure, inbound), and let gravity provide the return flow. The prognosis for single-ventricle isn't good.

While we still need to know how she and her heart progress, it is highly likely that the following will need to happen upon her arrival:

1. She will be in the hospital for ~5 months

2. She will be fed through a G-tube straight to her stomach. Babies with heart defects and DS tend to use more energy trying to eat normally and therefore do not gain weight - which we need her to do so that they can operate on her. They will use whatever breast milk I can provide and supplement with oil and/or sugar to provide her with the necessary extra calories.

3. She will need heart surgery to repair the variety of issues, and depending on the surgical path taken, it could require more later in life.

While all of this is hard to digest, what is outrageously harder to digest are the potential outcomes we have been told. These babies are more likely for fetal demise - meaning we would never get to meet our daughter. Secondly, should she continue to develop the first year of her life will be more than difficult and that not all children survive that. Thirdly. dependent upon the development and surgical outcomes, she may always have heart conditions that limit her physical abilities. Or, she is the strongest, most amazing baby girl in the history of the world and survives all of this and has a wonderful life. We just don't know.

We are struggling with these potentials more than anything else. We have been longing for the days when it was 'just a cleft lip' or 'just down syndrome'... 

On our appointment Tuesday, the Dr was concerned with the baby having what looked to be a smaller stomach. That coupled with my increased amniotic fluid caused him concern that the baby had a blockage or wasn't swallowing properly. Therefore, we were slated for an MRI on Friday. But after our 3rd ultrasound for the week the Dr's advised that her stomach looks to be of the right size right now and we should wait to see how she continues to grow before proceeding to an MRI. Basically, the Dr. would like to see her swallow so she can rule out esophageal atresia (blockage) (most common) or anything else. Baby girl was very active and she wasn't able to witness that full swallow, nor did she think she could capture it via MRI... so we wait to see how the stomach grows and do an MRI in a month if necessary.

So... we are left waiting - with all of our thoughts, fears, and hopes. We are not sure what to pray for, other than for God to watch over us all and His will be done. We feel/are utterly powerless.

We want you to know that we have decided to not have any showers or registries, nor do we plan on creating a nursery, yet. Our sole focus is on her health and the hope that, God willing, we will be able to bring her home. When that day comes, we know our families will be there to help us scramble to put everything together for an epic 'Coming Home' celebration. Until then, we don't think we can bare the sight of clothes, diapers, and furniture that might go unused.

Please share this email with the family as you see fit, we prefer that you do it rather than us.

We love you all and we know you love the Three of us, too. Pray for us.

Love,

Aubrey & Brad

I purposefully made this the first post as the Doctor told us "She {your baby} may not make it to her first birthday". We celebrated Elliott's first birthday today, on 10/21. The first annual "Ellie-bration" was a bigger deal than people recognized - but those who know our story knew it's significance.  

Ellie has a long way to go, but damn - she has already come so far. I have a mantra that I recite to her daily - full disclosure it is just as much for me as it is for her. It starts with "You are strong, you are smart, you are..." I will keep the rest between me and her <3 I start with "strong" for good reason - she has overcome more in the womb and in one year of life than I have in 30+ years. She is stronger than anyone I know and can accomplish anything. I want her to know that and know it well.

Her heart surgery is projected to be around age 2. Until that time comes and passes, I will be falling apart and picking myself up daily... growing braver each time because Elliott makes me strong.

Until the nexT21

-Aubrey