Carrie and her husband, Steve have enjoyed being missionaries for years in both Mexico and Africa. Because of the unique nature of their work, they have requested their last name not be used.
The couple intended to have their son in Uganda, Africa where they had been serving over the past 10 years, but ongoing medical complications would force Carrie and Steve to stay stateside.
The decision to stay in the US would be an unexpected blessing when Carrie developed preeclampsia, eclampsia, HELLP syndrome and delivered her son, Joshua, at 31 weeks.
Their five week NICU stay would not be the end of their struggles. Now age two, Joshua has had many months of eating complications they are learning to manage.
Get to know Carrie’s story in her words.
Faith and Patience
Very early in 2015, we experienced a miscarriage and were devastated. We were eager to welcome a little one into the world and couldn’t make sense of why God would allow this devastation. Just eight weeks later I began to experience the same morning sickness and we rejoiced that God had blessed us with new life growing inside of me. After 10 weeks of 24-hour morning sickness, we saw our doctor and were overwhelmed to hear a strong heartbeat and tiny movements of our baby.
Praying and Listening
It was at this appointment that we shared with our doctor that we would be returning to Uganda with the children we had been touring with in the USA for the past six months. I intended to give birth in Uganda where we had been working for the last 10 years. After sharing in our excitement, she took my hands and said to both of us that she really wasn’t comfortable with us being so remote and away from medical care. She had concerns about the pregnancy on the heels of a miscarriage and since I was so sick. We were devastated. With just two weeks before our departure back to Uganda, we sought the Lord on what to do. After much prayer we decided to submit to the discernment of our doctor and remain stateside for the pregnancy.
Praise God we did because the next 21 weeks were a very challenging time of severe morning sickness resulting in a diagnosis of hyperemesis gravidarum, a condition of severe and debilitating nausea. It became necessary for me to have intravenous fluids and very little activity just to make it through the day. Still, we were so delighted for the baby growing inside of me!
An Early Arrival
At 31 weeks, I went to bed one night and just an hour or so latter woke up in a great deal of pain and nausea. I had head and abdominal pain that were off the charts. I woke my husband fearing something was very wrong. I had gallstones before, so I figured that must be what it was. After talking to the on call physician over the phone we decided we needed to go to the hospital.
Everything was getting worse by the moment. When we arrived at the hospital it was determined that I had preeclampsia, eclampsia, HELLP Syndrome, and that my liver and other organs were failing.
Things were progressing rapidly and the baby needed to be delivered immediately as he and I were both in critical condition and face a less than 10 minute window of survival.
As I was whisked off to emergency surgery, all I could think was that it was way too early for our baby to be born. In the operating room our doctor joined the team of 14 medical doctors together for prayer. God’s peace was present in the midst of the crisis. It was only moments later that we heard the tiny cries of our son as he was rushed to the Neonatal intensive Care Unit. Weighing in at just 3 pound 1 ounce and a mere 16 inches long–we were overwhelmed. Joshua Benjamin was here over eight weeks early!
We had been thrust into a world we never knew existed. Doctors and nurses stood vigil at his bedside for the first 72 hours. Though in critical condition, Joshua was a perfectly formed baby boy and fighting hard. We were scared but grateful for the peace that God gave us and the provision of being stateside for this medical crisis.
Life in NICU
What was the most difficult part of having a baby born premature?
First and foremost, living moment to moment not knowing if my tiny baby would survive. Watching him fight for every breath and lie there so fragile was gut wrenching. Leaving the NICU to go home to sleep each night was gut wrenching. I was so afraid that something terrible would happen while I wasn’t there. I hated missing feeds and care time. I was struggling with feelings of guilt for him being born early, so leaving him so I could sleep only compounded the feelings.
What kinds of things did you do to feel more like a “regular” mom to your preemie?
When we did kangaroo care I was able to close my eyes and hum songs to him and for moments at a time all the monitors and hospital noises would fade away. “Tiny baby” became my new normal. I would see a term baby in the elevator and wonder what was wrong with them that made them so big. Also, participating in care time – temperature taking, diaper changing, eventually clothing changes, picking blankets, and bathing. Texting pictures to friends and family of milestones (even though they were somewhat different than other babies) helped to connect me to the outside world and celebrate the victories no matter how small they were.
What was it like relating to friends and family during your NICU stay?
It was difficult to talk to them as I would break down in any conversation. I was a basket case when I opened my mouth. Texting was a little easier. Nobody could really understand the NICU life from my perspective. They were compassionate but didn’t understand the pain and agony of having a fragile baby clinging to life.
Was there anything anyone did for you that helped make the NICU stay easier?
Friends and family texting encouragement, Bible verses, and about things taking place outside the NICU was really helpful. I was able to read them when I needed them or was ready to hear from someone. It allowed me flexibility.
The other NICU moms were amazing support. Also the March of Dimes parent support activities, lactation lunches, parent to parent dinners, and craft nights were amazing. Others being there in our world who were experiencing the same thing really helped.
What would you tell a mom who has a preemie baby in NICU right now?
First, hold your baby every moment you can. Skin to skin is an amazing time. The bonding and healing that happens in those moments will get you through anything.
Second, you are the mom and you know your baby better than anyone! If you think something isn’t right push until you get answers. Don’t be afraid to advocate for what you believe your baby needs. You might sound like a crazy person but chancea are you are right. You might offend a nurse or a doctor. Go with your gut–you know!
How is your preemie today?
Joshua just celebrated his second birthday. We have certainly had our ups and downs over these last two years but each day has been filled with joy celebrating our miracle baby no matter what the challenges are!
One of our biggest struggles has been getting Joshua to eat solid foods due to medical complications. When we introduced solids at 10 months actual we started down a road of throwing up sometimes as many as six times a day. We tried everything! Over the next eight months of doctor appointments, tests, therapy, and research we discovered that he has eosinophilic esophagitis, laryngopharyngeal reflux, subglottic stenosis, recurrent respiratory syncytial virus (RSV), chronic ear infections and food allergies.
We have been pursuing natural and conventional treatments and now at 24 months actual we finally feel like we are making progress. He is learning to eat and not be afraid of throwing up. He is very slowly trying new foods and textures. He has an upcoming surgery to dilate his trachea and eliminate some of the scar tissue which we hope will help with his breathing, swallowing, and chronic upper respiratory illness.
Despite all that, Joshua is the most joyful and delightful little boy I know. He was born a fighter and has proven that over and over again. We are so proud of him. He has exceeded all of his developmental milestones and excelled in all areas other than those mentioned above.
I always say preemie moms deserve a merit badge. What merit badges do you think you have earned?
When Joshua was born I was told to pump every two hours. So I did. It gave me something to focus on that I could do and control. Once we were home and he started nursing full-time I continued pumping every two hours. It didn’t occur to me that I could back off since he was nursing so much. I ended up pumping a gallon a day on top of Joshua full-time nursing. I finally mentioned it to my doctor and she laughed while telling me I could back of the pumping! Over these past two years I have donated 200 gallons of milk to the milk bank that supplies the NICU we were in. So maybe a “gold cow” merit badge. I have been so happy to be able to give back to the NICU.