In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.
In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.
I’ve told my story so many times, you’d think I’d be able to write it down too. I’ve given talks to women’s groups and loss groups about it, done blog posts about it, etc., but something about this one is different. Maybe it’s because I know the audience reading this will be different… you’ll be in the thick of preemie-hood or the NICU or bed rest and you’ll want comfort and hope…
And I won’t be able to give you those things… Well, not in the way you’d expect at least. You see, my birth story ended with the loss of one of my triplets. I don’t want to scare you – having a preemie doesn’t mean you’ll experience loss too – but I do want to be real with you. One of the most real things I can do or say is this… my hope comes from knowing he made a difference in his 49 days of life. It comes from seeing his surviving brother and sister meet milestones and overcome obstacles. It comes from knowing that my story gets to be told and that it matters. And I hope you’ll feel that hope in what you read today, and not the sadness of loss.
I got married in 2007 and always knew I’d be a mom. We got pregnant right off the pill a year later, but sadly, we miscarried. We. Were. Devastated. I never thought I’d be dealing with miscarriage. Or what came next. Three years of infertility, another miscarriage, 2 rounds of IUI, and finally – finally – we were pregnant.
I was scared all over again. I was placed in the high-risk category. We nervously counted down the weeks and each week were surprised that all was going well. I had a shortened cervix, so I had a cerclage placed. At 22 1/2 weeks, I was placed on home bed rest to slow things down a bit. But that only lasted 2 weeks, and I was off to the hospital for a month of bed rest there. It was an experience that stuck with me so much, I even wrote a book about it.
Now the goal was to keep the babies cooking as long as possible. After 11 days, Baby A’s water broke, but he stuck in there for 19 more days.
From before birth, Carter fought to live. He fought to help his brother and sister live. While I was in the hospital on bed rest, his sac ruptured 19 days before his birth, leaving him unprotected. Because he was able to stay in, his brother and sister were able to continue to grow.
It would be food poisoning that would finally do me in. 2:30 a.m. and I was in full blown contractions. They couldn’t stop them, and I delivered my trio at 27 weeks and 5 days at barely 2lbs5oz each. My mom was in Hawaii. I’ll never forget how crushed she was to not be there. They were immediately taken to the level 3 NICU and I was taken to recovery. I don’t remember much about that first 12 hours. I do remember that at one point, my husband had to tell me some bad news, and I was so drugged up that I just kept encouraging him like it was happening to another baby and not ours.
At birth, Carter was the weakest. On the first day, the doctors didn’t think Carter would survive. His lungs weren’t working. After a tense few hours, it was evident Carter was a fighter as he survived his first brush with death.
Those first few days they were in the NICU weren’t too hard, probably because we were still in shock and adjusting to the reality of things. It was the day of discharge for me that things got real. We got bad news on all three of them. It was the first time I cried. I wouldn’t cry again for 44 days…
During his first few days of life, he struggled with high glucose, needing high oxygen support, and needing morphine and blood transfusions. Little did we know this was just the beginning. The doctors also discovered that he and his siblings all had E Coli sepsis, which wreaked havoc on their lungs and caused them to have brain bleeds. They were diagnosed with level 3 and 4 brain bleeds and hydrocephalus, a condition which can lead to cerebral palsy or other issues.
At home, I focused on pumping – getting over 70 ounces a day of the liquid gold. It kept me sane, giving me something to do for the babies. I went to the NICU every single day. I think I might have missed one day in total. I had to be there. I had to.
After only a week of life, Carter started to experience edema, and we began to lose the baby we knew and see a more swollen boy. He would live the rest of his life with this challenge, getting up to 6 ½ pounds at one point when he should only have been around 4 pounds at the time of his death. Throughout the weeks, Carter’s journey would be one of constant ups and downs. He would have a good day, only to have a bad day the next. After about two weeks of life, we began to discuss the possibility he might not survive this journey. We kept our faith and refused to give up on our little boy.
Each baby had their ups and downs. Braden had ruptured bowel at 7 days old, Tenley and Braden both had to be transferred to a higher-level hospital and had surgery for their brain bleeds that first night there. She’d have 2 surgeries by the time she left 86 days later, and he’d have 4 surgeries and leave after 111 days.
Even when Braden & Tenley continued to make progress and moved to a different hospital, we did not give up hope that Carter would recover and be well enough to make the move with them. But, the night of their transfer, we were told he only had a 10% chance of making it. We still remained hopeful, and our boy still fought. For the next few weeks, we had many ups and downs, many times we didn’t think he’d make it. At one point, we said our goodbyes and made peace with everything that might happen to him. We knew he’d be going to a better place, and we knew we’d be okay too.
So many emotions coursed through my body during these days. It was unbelievably hard. It tested my faith, my marriage, my friendships, my everything. I was in a whole new world. I could spout off terminology like I was one of the doctors in the NICU. I kept a detailed journal of everything – the updates, the records, the stats – everything. It was another way I stayed sane.
Then, things took a turn for the worse as his kidneys shut down and he was on full support. But, they also took enough of a turn for the better that a small window of opportunity was found to transfer him to the same hospital his siblings were. One last chance. After he was moved, he made great strides. He fought hard, and he won several battles. He was coming out of the woods…
Tenley would eventually get contaminant meningitis at the site of her brain surgery opening, which sent her back to level 3 and almost took her life. It might not have been that bad to deal with, except for the fact that it happened at the same time as we were losing Carter.
At the same time as Tenley was back in level 3, Carter wasn’t keeping his stats up and was weakening. They couldn’t figure out why. They did what they could, but it didn’t look good. He hung in there for awhile, but that Thursday night, his stats dropped very low – dangerously low – and they couldn’t get him stable again. We were called, and we came. They found that fluid had filled his lungs. He had an infection – the deal breaker, we knew. And, it was time to let him go.
It was my husband who finally came to the decision to let him go. And I had to let him make that decision. As cowardly as it may seem, I couldn’t do it. Sure, I said goodbye and I made my peace, but I couldn’t bring myself to say those words to the doctors.
We held him on Friday, the 27th for his last 2 hours of life and for the very first time in his entire life… we watched him slip away, and we comforted him during his last moments as we sent him off into Heaven, knowing we’d see him again one day. He fought right up until the end. He helped save his brother and sister, and we believe he touched many lives with his fight and his story…
It had been 44 days since I cried. I tend to only cry when I’m frustrated or angry. Sometimes when I’m overwhelmed, but rarely when I’m sad. But, I cried. I lost it. Hyperventilated when the doctors took him off the machines. Maybe I was mad at the world in that moment, I don’t know…
I only cried a few times in the weeks after. Something in me knew I had to keep going for my survivors. I was still in the thick of it and needed to focus on them. I think I made a conscious decision to choose to be okay. I wanted to celebrate the 49 days I had with him, and not mourn what I wouldn’t have in the years to come. This perspective is what gave me hope and allowed me to move on. Granted, I did have emotional affects from the experience and had a bout with post-tramatic stress disorder, especially once both his siblings came home – and he didn’t.
All this is hard to hear – and write – but it needs to be shared. It’s one of the unfortunate realities of having a preemie. It’s why the research and the support and all the community surrounding it is so important. It’s why my husband and I do a yearly fundraiser and are in the process of forming a non-profit. You can actually participate in this year’s fundraiser currently by going here.
I do want to end on a positive note… today, Braden and Tenley are about to turn two. They’re thriving, overcoming obstacles, hitting milestones, and making us feel blessed in every way. Yes, they’re preemies. But they’re more than that. They’re fighters. Survivors. Miracles. And, they’re my gift.