In honor of Prematurity Awareness Month, I asked some of my fellow preemie moms to share their stories here on the blog. I figured you all know our story, but there are so many more faces to prematurity. I think everyone’s story deserves to be told. What better way to raise awareness than to hear what it was like for other families…Read more stories here.
I find Brinley’s story hard for me to write. It’s been nearly 20 months since her traumatic birth. Around Christmas 2011, I wasn’t feeling quite right. I felt a heaviness in my pelvic region. I suspected some fluid leaking, but I figured it was my imagination. After eight other babies, I should know if something was going to happen.
The month before, I read the book A Love That Multiplies, by Michelle Duggar. She wrote several chapters about the pre-term birth of her daughter Josie at 25 weeks gestation and described their NICU experience. I had no idea what that book would prepare me for. I remember thinking, “I couldn’t handle that. It would be so scary!” Little did I know that I would deliver my precious baby at 24 weeks, one gestational week earlier than Michelle delivered Josie.
I called labor and delivery on a Sunday night. They told me that usually not much is done until 24 weeks, and that, because I was 21 weeks along, I could see my midwife. I was unable to see my midwife until Thursday afternoon. I laid low and stayed off my feet. At my appointment, she took a look and then said, “Michele, you are now under the care of a doctor. You are 4 cm. dilated and have a bulging bag of waters!”
My husband quickly joined me, and we were admitted to the hospital in La Crosse, Wis. The medical team did a lot of looking and testing and informed us that the results were positive for an early delivery. The team also noticed that our baby was showing a two-vessel umbilical cord. The medical team said that, because of my rare blood condition, if I started bleeding, they would not have enough blood available to save me. For these reasons, and considering that one of our other children has a severe heart defect, they decided to send me by ambulance to Mayo Clinic in Rochester, Minn.
When I was examined at the Mayo Clinic, the medical team thought they found a small leak too. They started me on P17 shots and sent me home. The doctor didn’t think bed rest would help nor hurt. I disagreed and stayed flat down.
After 5 days at home in bed, trying to entertain my other kids and keep home schooling going, I felt an awful pain in my cervix. I live 45 minutes from the hospital and had one of my babies 17 minutes after labor. I was shaking like a leaf with fear of what would happen, but went in to be examined. The ultrasound showed that the baby’s foot was in the bulging bag. The medical team said I had to stay at the hospital until her birth. As we made it past weeks 21, 22, and 23, I was hoping she would reach full term.
Then, on day 3 of week 24, as I was lying in bed, I realized I needed to use the bathroom. When I called the nurse to help me get the pumps off my feet, WHOOSH, my water ruptured. A lot of people came running in. I was taken to a delivery room where they put in large lines and started magnesium sulphate and antibiotics. I was so afraid and so shocked; I just prayed. The nurses were ordered to keep the baby on a 24-hour monitor and had to take turns because the normal monitor didn’t pick up her heartbeat. So they sat by my side faithfully keeping her heartbeat. Day 4 passed, and then early on day 5 of week 24, I developed a fever. I started contracting on my own. The medical team called my husband and said, “We won’t try to stop it.” I had a chorio amniotic infection.
After a few hours of labor, the medical team started Pitocin, and I delivered Brinley just after 12:00 p.m. I was shaking under my blanket, and our heart rates matched at 160 bpm! The neonatologist said if she comes out pink and moving, it’s a good sign, but if she is gray and limp, it’s not good. Many people were around us, and the doctor quickly handed my pink moving tiny baby girl over for steroids and for intubation. This was just the beginning of our NICU journey.
Brinley Grace was here. I didn’t see her for about 6 hours. My first glance at her took my breath away. I was in utter shock at how small she was at 1 lb., 7 oz., and 12 inches long. She was perfectly formed, and her eyes were fused shut like a newborn kitten. I had never seen such a tiny baby before. She looked like a baby bird. Her skin was so thin and see-through. She had tiny fingernails and a little bit of dark hair on her head. I was in awe at the sight of her.
She had a “honeymoon” period, as many preemies do, and was on 21% oxygen but with her two vessel cord, the doctor needed a better line to feed her and take blood. He called in a surgeon who placed a line in the jugular vein in her neck.
The next day, on her fifth day of life, she became very sick. The doctor asked us if we wanted to send her to Mayo by helicopter to get her on a better ventilator. We said “Yes! We will do anything to save her.”
As we arrived in Rochester, we found out that the neck line broke into her lung. They extracted 3 tablespoons of total parenteral nutrition (TPN) out of her tiny lung and had her settled on a vent. We stayed with Brinley in this room in the NICU for 8 weeks. She failed extubation seven times and coded seven times. I saw three of the codes, and I just wanted to hide. I was scared out of my wits. I felt like both running away and picking her up to help her all at once.
Brinley had a lot of problems with her lungs and was bagged often. She was the queen of spells. I never thought she would outgrow it. She had scopes to see the damage the tube did in her throat. She had 16 blood transfusions. She developed Retinopathy of prematurity (ROP) and needed laser eye surgery on both eyes. Brinley developed medical necrotizing enterocolitis (NEC) twice and had problems with extremely low blood pressure, where the doctor sat by her bedside for two nights in a row; he said even he was scared for Brinley. Hindsight is 20/20!
My tiny girl grew very slowly, but she was a fighter. Brinley had so many people praying for her, which I believe was her best medicine. We had a lot of hard days and a lot of good ones and boring ones too. I tried to bloom where I was planted in the NICU without my family. Because I have a large family, we couldn’t all stay at the Ronald McDonald House together.
After 151 days, exactly 5 months after she was born, we took Brinley home. I was thankful to all her doctors, nurses and respiratory therapists for saving our beautiful baby. I met a lot of new friends and learned more about life. I shared tears and laughs with my new friends and was blessed to walk away with our baby. I mourned with my friends who weren’t so blessed. I learned more about my faith in God, my trust in strangers and about me.
When Brinley came home, we still had monitors and oxygen to cope with. We were fortunate that she didn’t need too many medications. Home was a transition for all of us. After nearly 6 months away from home, my family had a routine, and I had to jump back in with a needy baby. A lot of things were different. Before Brinley arrived in our lives, trying to run our home smoothly came easy for me. I had pride and found out I needed a good case of preemie baby to make me realize I couldn’t do this without help. My older kids and husband were amazing through it all! I am so thankful for their devotion and love.
Now 19 months later, I’m having a normal life again. Belonging to support groups online and reaching out to other new preemie families has helped me by giving back. I’m still connected to the moms I met in the NICU. There are silver linings. We don’t always see them at the time, but they are there.
Brinley is doing remarkably well for how sick she was and for how long she was in the NICU. She is off oxygen, walking, and can even say a few words. Although her weight gain is still slow, she eats well and is healthy and stable. She was 14 lbs, 4 oz. as of September 1, 2013. She recently was diagnosed with transient hypothyroidism but is handling the medication well.
In all, I’m thankful, at peace, and blessed beyond measure. We give the glory to Jesus for Brinley’s life and knowing he knit her together in my womb. She has truly exceeded all our expectations. I hope her story helps someone else see that they are not alone on this journey. We are surrounded by other families who have endured the NICU experience.
Michelle has nine children ages 25 years to 21 months and lives in La Crosse, Wisconsin. Brinley is her only preemie.