It’s been one year. A year since you saw us nearly every week for ultrasounds and a year since you reassured me every week that our precious Baby Butternut (nickname in utero) was still getting “enough” oxygen inside me to hang in there.
Did you know that when I told my friend that, she said “how terrifying.” I agreed.
No one wants to hear that their baby is getting just enough oxygen in the womb, but for me (sometimes), it was enough to hear that. My baby was still breathing.
You helped my family during a turbulent, scary pregnancy. Each time you said that baby was making it, even if not perfectly, and that the placenta was still surviving, I could breathe a tiny bit.
Your answers were nearly the same every week. Non-committal, comforting, steady.
Do you remember us? I was the one with all the questions.
When we had to transfer our prenatal care to Maternal Fetal Medicine so early on in pregnancy for a cystic hygroma found on Butternut’s brain, I only wanted a female doctor. It was the most vulnerable time in my life and I figured the best care would come from another woman, perhaps another mother.
Surely a mother would bring me better news about my baby.
Everyone was very nice in your office. But our first visit to find out if baby was okay turned out to be one of the most heartbreaking days of my life.
The female doctor (mother status unknown) who I requested, tried her best, but will always be remembered for giving us more sad news.
She rattled off a list of abnormally after abnormality she saw on the ultrasound that day. I do not like lists, and especially do not like lists about possible health conditions for my baby. Immediately, my sweet husband and I tried to hold on to each other in the midst of a roller coaster.
Here’s what she told us:
Baby still has the hygroma.
Baby looks to have an extra digit.
Baby looks to have a small chin.
Baby looks to have a clubbed foot.
Baby looks to have a congenital heart defect.
I thought baby only had swelling on the brain! Wasn’t that enough?
You probably already know this, but we were told that day that our dear baby might not make it, to be prepared for a miscarriage, even that weekend. It was so specific and strange to live in that space. I remember thinking that I would love this baby as long as we had him (although we didn’t know then that baby was a him). My husband said the same thing. We would love Baby Butternut all of our days. We would cherish the days God gave us with him.
In case you’ve forgotten (we haven’t), we were given a misdiagnosis of Trisomy 13, which broke our hearts. As you know, most babies with Trisomy 13 don’t make it through pregnancy and if they do, they usually don’t make it past birth. We were forced to think about burying our baby at a time in pregnancy when parents are usually celebrating life.
We still celebrated the life of our baby, but we cried a lot. I was speechless at times, which never happens. All we could do was pray.
We found out baby did not have Trisomy 13 after all, that he had Trisomy 21, around the time we met you. You were not a woman; I thought you would be direct, unemotional, and factual.
You were all those things. And for some reason, it was just what I needed. I didn’t want any more lists, I didn’t want to cry constantly, I didn’t want to hear the words “incompatible with life.”
Even though everyone meant well, turns out I wanted non-committal, confident reassurance.
When we started to meet with you, I realized you were the head of the Maternal Fetal Medicine department. I have a knack for finding the medical directors from every office. Just ask our vet.
Nothing seemed to alarm you. You were calm. You gave us hope. Dark hope, but hope.
Do you know that you MFMs are a dark group? You have to talk about the same unfortunate statistics, all the time. It makes you very serious.
I bet you all could use a party.
Appointments with you were not a party, yet you still knew how to bring in a tiny bit of humor and make us smile.
“We’re not driving the bus!” You said each week.
You told us that baby was driving the bus. You said Butternut could very well come early. Or he might not. You said he would tell us when he needed to come out of me, if things went too south or the placenta got weaker. Butternut would tell us when enough was enough.
At some point you mentioned the plan if baby stayed put. No matter what, 39 weeks was eviction time.
By 39 weeks, he would be as cooked as he needed to be to stay strong at birth and in the NICU. I was glad you said we wouldn’t take ANY chances after week 39. 39 weeks was our goal.
I’m sure you remember how there were a couple of moments I begged that he could come out sooner.
At one of the earlier appointments when he was looking really good, I said, “just take him out now!”
I didn’t want anything to happen. I didn’t want to have to count kicks. I didn’t want to wonder if the placenta would stop working. I didn’t want to risk that I would no longer feel him move, one of the warning signs you gave us.
The plan was good. Don’t take him out too early, just because. Don’t take him out too late, and be careless.
We would find the sweet spot, or try to anyway.
We prayed baby and placenta would stay strong through the deep uncertainty of each week. We packed our bags for the two hour trip to get ultrasounds in the final weeks. You warned us, if you saw something concerning or if Butternut even looked at you wrong (mostly a joke) close to the end, docs would take baby out right away.
What a world we live in to be able to look this deeply at a baby throughout pregnancy, to have a team for him even before he was born. What a nerve-racking grace. What a blessing to meet our beloved cardiologist at 20 weeks utero and watch him perform several echocardiograms while Butternut lived inside me.
How amazing and frightening that our baby had more doctors before he entered the world than most people have as adults.
How special that you were so direct and knowledgeable and didn’t leave me guessing.
How gracious to answer the same questions week after week, even as you couldn’t know all the answers. How good it was that to be reminded that someone else was driving the bus. What a kind way to remind a scared mom and dad that they were not in control without actually saying, “you’re not in control.”
You may have thought Butternut was in control, and in some ways he was. We listened to his cues and what he needed, week after week. Yet, I believe someone else was in control.
I like to imagine Butternut, the fighter that he is, in the driver’s seat the whole time, being held by the One who made him.
You saw us get to 38 weeks. Then you went on a trip to Maine (where my husband is from) the week baby was going to be induced, but we still had a plan. We knew the midwives who would deliver him the following week and I prayed for a certain midwife to be the one working that day.
We were set for the following Wednesday, the induction appointment made. We joked one last time about not driving the bus.
You didn’t see Butternut come into the world, but I’m guessing you heard. At least I hope you did.
You live and work on the side of pregnancy, as parents desperately try to navigate their high-risk babies. Here’s a sweet birth story if you need it right now.
Our sweet baby made it to 39 weeks!!!
My labor started at midnight and Butternut was scheduled to be induced at six in the morning. We went to the hospital and gave registration my name and they said, “the 6 AM induction is here.” Three hours early.
Butternut would defy every odd, including coming on his own when everyone said he would have to be induced.
My husband, the one who came to every single ultrasound, was by my side during the labor and birth.
Butternut’s labor and birth surprised me for being much shorter than his sister’s 29 hour marathon, the one that made me a mother for the first time, to a beautiful, brave girl.
Bravery runs in the family, because Sammy has always been brave, too.
We named him Samuel. Samuel means “God has heard.”
He was the baby we prayed for, that so many people prayed for. God heard our prayers and our cries for Baby Butternut.
Butternut Sammy is going to be one on May 17th!
He made it so far. He is still making it so far.
We have 13 ultrasounds worth of pictures of Sammy, many of which you saw and analyzed.
Here he is now.
He is a miracle.
At one point you told us you didn’t see the clubbed foot any more, or the extra digit. The hygroma was gone.
God healed these things, this I believe.
The only condition left when he was born was the heart defect, the hole in his heart that would require not one, but two major surgeries this year.
It has been the year of exhaustion, a year of four long hospital stays, but it was also the year of fighting for what is worth it.
This same baby you watched grow inside me has done even more this year. He has fought to live.
He is our brave Lion Heart, our beloved Sammy, our Turtle King.
He will turn one in a week. And like his birth, like his life, like all our days with him, his birthday makes the world brighter.
This is fitting because light is the meaning of the name of his best friend, otherwise known as his sister.
His birthday will be a party.
We will celebrate him.
It doesn’t have to be a perfect day. I have learned there are no perfect days. But the there are days filled with beauty, nonetheless.
No matter what, it will be a beautiful day.
The day reminds us that Sammy is with us.
Which is more than enough.
I just love that you called him butternut and he's got such a beautiful red/orange tint to his hair. ❤️❤️
Happy Birthday to Sammy! Thank you God of love, of life, of Sammy, and of us all !!!