Why we March for Babies

I unexpectedly found myself the mother of identical twin boys at 24 weeks gestation in the early morning hours of Valentine’s Day, 2014. To say I was unprepared is an understatement. Jonah and Austin were born 36 hours after my water broke. Jonah was 1 pound, 9 ounces and Austin was 1 pound, 10 ounces and to me, they were perfect. 

My husband and I were immediately thrown into the (neonatal intensive care unit) NICU world with my husband navigating the first few days as I healed from an emergency C-section on a different floor of the hospital. The NICU staff was kind enough to explain to us all the various machines and cords attached to our boys numerous times until we finally understood what numbers were ideal and which alarms were serious. We were overwhelmed, but slowly got used to what would be at least a three-month stay in NICU. When the boys were 11 days old we received the news that Austin had not only suffered a severe brain bleed, but he was also battling some kind of infection. We were immediately moved to a higher-level NICU attached to the hospital where I delivered.

Austin was with us for 8 incredible weeks, but we lost him because of a host of complications due to prematurity, most notably a bacterial meningitis infection in conjunction with a bilateral Grade IV IVH (brain bleed) that led to PVL (a type of white-matter brain injury). That’s a lot of acronyms, but any parent who has spent time in the NICU quickly learns what they need to know. We miss Austin every day but are so grateful for the time he was able to spend with us. We see his strength in his twin brother and now his little sister as well. We are grateful to Texas Children’s for giving him the best chance of survival possible and the best care while he was with us.

Jonah’s NICU stay ended up being a little longer than initially anticipated. His biggest battle was breathing, which can be quite a battle to overcome. While in the hospital he had a PDA ligation to help his heart transport oxygen and finally, two weeks before his due date, he came off the ventilator. Once off, life became a little more normal, holding him no longer took a team of three professionals and we could start the next major obstacle – feeding.

Jonah came home after 160 days in the NICU, on oxygen and with a feeding tube…but he was home! Those first few months were a whirlwind of schedules: feeding, medications, tube cleanings, therapy and doctor’s appointments, etc. There were many times I felt more like Jonah’s nurse or secretary than his mother. A few months later he came off oxygen, conquered some of his feeding issues and slowly the medications and doctor’s appointments became fewer. He is 2 years old and I am pleased to say that while he has a few lasting prematurity “quirks,” all-in-all he’s a pretty normal 2-year-old. That is not to negate the work that has gone into us being able to say that. He still receives therapy services every day, as well as takes a few medications. A cold sends him into a tailspin that puts us back on an all-consuming medication and treatment regimen. We are hopeful he will continue to outgrow some of these quirks as he gets older, but we know some things may last a lifetime. We are so grateful for how far he has come and can’t wait to see the progress he continues to make.

Jonah’s little sister was born in January. It was not an easy pregnancy. We started out hopeful that Jonah and Austin’s prematurity was mainly caused by carrying identical twins. At 20 weeks I was put on bed rest and started a few different medications and procedures to keep our daughter from making an early arrival. It was a stressful pregnancy, but I kept telling myself it would all be worth it. At 36 weeks the decision was made that it was time for her to come due to some complications from the boys’ birth. Quinn Austin Bryan was born on Jan. 18, 2016 at 36 weeks. I looked forward to holding her and being able to enjoy a “normal” delivery, but once again we found our child being whisked to the NICU. While I was filled with nervousness and worry, I knew more this time. I knew the neonatologist taking care of her, because he had taken care of my boys. I knew the NICU nurses, I knew the machines and I knew the acronyms. I also knew Quinn would be a much different NICU patient than her brothers. We joke she just needed to check out the NICU so she could meet all of her brothers’ friends. She made her way home 10 days later.   

Being in the NICU can be extremely isolating. As any parent will tell you, parenthood is filled with doubt and uncertainty. I spent a lot of time doubting my abilities to take care of my children and worried about what I could have done differently. By delivering at Texas Children’s Pavilion for Women I know I had the best prenatal care possible and I know there was nothing more the doctors or I could have done. I am grateful for March of Dimes for helping all women have the peace of mind that their prenatal care is the best of the best, for the surfactant treatment, developed by March of Dimes funded research, that helped Jonah and Austin’s lungs develop. I am also grateful for the newborn screening the March of Dimes advocates for which found Jonah’s hypothyroidism which we were successfully able to treat so he doesn’t have any negative side effects. I think the best thing the March of Dimes does though, is help families know they are not alone. There are good days and bad days, happy endings and not so happy endings, but whatever the outcome, you are not alone. By being able to reach out and find others in a similar situation we as parents become our children’s best advocates and supporters. Knowing  someone else has walked a similar path gives hope and comfort.