A Little Mustard Seed. Tiny and Mighty!

I would like to introduce you to my daughter, Hannah! She has a twin brother, Henry. The twins were my 4th pregnancy.  Hannah has an older brother, 15, a sibling in heaven that we lost early on in my pregnancy, and an older sister, 12.  

I was 39 when I got pregnant with our twins.  My husband and I wanted another baby and God surprised us with twins. Early in my pregnancy we had blood work completed and discovered one of the babies had a high probability of having Down Syndrome.  After several ultrasounds we were fairly confident that Hannah would be born with Trisomy 21. In one of our ultrasounds, we also saw that she would be born with an AVSD heart defect and would most likely require open heart surgery between 3-6 months old.

I had weekly appointments to check on Hannah’s growth, sometimes multiple appointments in one week.  Thankfully, Henry was growing and doing well.  At 35 weeks Hannah was considered growth restricted and the blood flow through her umbilical cord had essentially stopped.  I left my appointment and went straight to the hospital for an emergency delivery!

Born via c-section Hannah weighed a little over 4 lbs.  They immediately took her to the NICU.  Hannah struggled to eat and initially had an NG tube placed to help with feeding.  She  struggled to maintain her oxygen levels.  Due to her heart defect, too much oxygen made her heart over work, fluid began to build, and she was placed on lasix.  After 64 days in the NICU, Hannah was able to finally come home and meet her siblings.  Their nursery became a little hospital room; with a scale to track her growth, a feeding pump, a pulse ox machine to monitor her oxygen saturations, and an oxygen concentrator to provide oxygen when she dipped too low. 

We made it to October, when Hannah tested positive for COVID and we were admitted once again to the hospital. The morning after we arrived we came very close to losing her.  She was struggling to breath and started turning purple. I called a nurse in and as soon as she saw Hannah, she immediately hit the code alarm.  Within minutes between 15-20 nurses/doctors flooded her room doing everything they could to stabilize her.  We were immediately rushed to the ICU where they continued to work for over an hour before finally getting her to stabilize.  I stood, motionless, as I prayed over the doctors/nurses and Hannah. With her heart already weak, her body couldn’t keep up and we immediately started discussing her surgery.  We had to give her body time to heal from the respiratory infection but we also couldn’t push the procedure off too long.  For the next 5 weeks I never left her side.  Hannah coded 3 more times before we finally made it to her open heart surgery on November 18th.  Her OHS was a success  and the doctors were pleased with her results. Finally, on December 4th we were able to go home. 

After surgery, Hannah began to make slow but steady progress.  She was hospitalized a few months later to have a g-tube placed to help with feedings. Due to her lung hypertension she also still required oxygen to help keep her saturations up.  Thankfully, after about a year of having her g-tube she was able to have it removed and has been eating solid foods since.  She no longer requires oxygen, unless she gets sick. She receives developmental therapy, physical therapy, and speech therapy weekly.

Hannah has endured so much in her short little life.  Through it all she continues to amaze me. I watch in adoration as she meets milestone after milestone. She is an amazing little girl full of love, happiness, perseverance, and hope. SHE is BORN MIGHTY!!

In closing, I recently started a Bible Study on the book of Esther, by The Daily Grace Co.  As I was reading,  the author made a point that when we are young we have a fairytale-like vision of what life is going to be like - full of joy, comfort and ease. But, most of the time our life doesn’t turn out just as we had envisioned.  It doesn’t mean that our life is any less lovely, but it does mean that sometimes “the beauty of life is hidden beneath the layers of heartache and hardship.”  Our family's story has had its fair share of hardships and heartache but we have been able to overcome the trials through the grace and love of God.  He tells us to “cast our anxieties on him, because he cares for you” (1 Peter 5:7).  He is our great partner in life helping with these heavy burdens of life. I read in one of my devotionals, “I can look for puddles after a rainstorm or I can seek to see the rainbows in life.” We are honored to be named as NICU Ambassadors. We want to share Hannah’s story not because these things define who she is, but because we want to encourage anyone who may be reading this and searching for their own rainbows.  We pray that we can help others find their own rainbows in life!  Thank you to the Born Abel family for affording us this great honor and opportunity.