The first six months of our pregnancy were picture perfect. No morning sickness, no crazy cravings, no nothing. Steel was so healthy and so was I. It had been a breeze and I would joke about how easy it had been for me. That was until March 11. On a Sunday night, around midnight my water broke. Only being 26 weeks pregnant, I thought it was me not being able to control my bladder. So it continued through the night and into Monday morning when I called my doctor asking if this was “normal” for my perfect pregnancy. It’s not. I got told to go to the hospital immediately.
At the hospital they did all sorts of tests and ultrasounds and determined that Steel was too small to be delivered there and my case was too high risk. I would be transferred to a level three hospital that has a better NICU, in case Steel decided to make his entrance. They started me on all sorts of medications, steroids and antibiotics and then I took a long ambulance drive down to St. Mary’s Medical Center in Palm Beach.
There I became the star patient of the antepartum ward. The goal was to make it to 34 weeks and then I’d be induced. I stayed on bed rest for nearly six weeks before going into labor at 32 weeks. Hunter stayed by my side every day and slept on a chair for six weeks, God bless his soul.
Being born eight weeks early is rough for any baby, but we are so thankful we made it that far. We were warned when my water broke that there would be a lack of amniotic fluid for the weeks until birth and Steel’s lungs would be under developed more than your average 32 weeker, but God threw us a whole new battle.
When your water breaks prematurely, your labor is usually very quick. I started having contractions around 6 pm and was in full blown active labor by 9 pm. I had two epidurals, neither of them worked. Labor was progressing smoothly and Steel was on his way! But by 10:30, Steel’s heart rate started dropping rapidly and it became full blown panic mode in the delivery room. There wasn’t enough time to suction him out or go for an emergency c-section, so forcep delivery it was. Steel’s APGAR score at birth was a 1 and aggressive resuscitation was needed.
From being stuck in the birth canal and the use of forceps, Steel’s brain got injured. The NICU team decided to cool him by dropping his body temperature for 72 hours to stop his brain from swelling and to prevent his organs from shutting down. This had never been done on a baby younger than 36 weeks. On top of this, he was intubated on oxygen and heavily sedated. His brain was on constant monitoring to check for activity and seizures.
After several days and a few rounds of antibiotics, I was sent home from the hospital. Except home is an hour away and leaving our baby there was harder than anything we’ve ever done.
10 long days after Steel’s birth, we got to hold him for the first time. He had dropped some weight from his original birth weight of 3 pound 11 ounces to somewhere in the 2’s, but he was so precious and looked just like his daddy.
The next 94 days seem like a blur. Hunter and I drove back and forth, an hour each way, to see our baby every day, sometimes twice a day. We spent all day and into the middle of the night next to his isolette. Skipping meals and running off coffee, Hunter and I were emotional and physically drained.
In those 94 days, Steel slowly blossomed into a full term baby. We had so many bumps in the road and incidents that tested our faith. Steel was eventually taken off the ventilator, to a nasal cannula and then slowly worked his way down to nothing. He also worked his way out of the isolette into a big boy crib. He received multiple blood transfusions, surgeries for hernia repairs and to have a g tube placed for feeding, rounds of antibiotics, medications, fluids and the list goes on and on. I’ll never wish what our son had to go through onto any parent. Steel has fully lived up to his name and has proven that the power of prayer is truly incredible.
On July 21, STEEL WAS DISCHARGED and it was the greatest day of our lives. But, our journey didn’t stop there. In the first month of Steel being home, we had 25 doctors appointments and it’s been a crazy ride. We’ve seen every specialist possible, from Cardiology and Pulmonology to Neurology.
Before leaving the NICU, there was a possibility of Steel having Craniosynostosis. Craniosynostosis is where the plates in the head fuse prematurely, leaving no room for the brain to grow. Hence, causing even more damage to his brain. After a few follow up appointments with the neurosurgeon and CT scans, it was confirmed that Steel has Craniosynostosis.
Steel is scheduled for surgery on September 20. The doctor and his team will open up his skull and remove the part of bone that is holding it all together. Steel will spend a few days to a week in the PICU at St. Mary’s after surgery. Once he is healed, Steel will have to wear a helmet to protect his little noggin and help shape his bones to where they need to be.
This is where I’ve finally come to the realization that we just can’t do it all on our own. Steel’s helmet itself is $4000. Since Hunter is in the military, our insurance company has truly been incredible to us and very understanding the most they can be. They have covered all in-network expenses. The problem lies with out-of-network doctors. All of Steel’s doctors from the NICU and now the specialist are all out-of-network. Now, the medical bills are piling in and we just can’t do it.
My job has been beyond incredible to me. Working for the school district has introduced me to so many wonderful people. While going into the hospital two months before school got out, I had to use up all my vacation time and then many generous people donated me time to keep me paid during my stay until the end of April. Since then I have gone on FMLA unpaid leave and my boss has been gracious enough to give me this school year off so I can stay home with Steel and take him to all appointments and therapies that he needs.
My main concern right now is Steel’s helmet for after surgery. Our insurance company simply will not cover it. I've begged and pleaded for mercy or even a payment plan so he can get it. None of it is possible. As much as I hate this, I am asking for help. If you know me and my family, you know we have never asked for anything and this is very hard for us. We must put Steel’s needs ahead of our pride and ask for your support during this rough time to get Steel his helmet and help with the pile medical expenses.
Hunter, Steel and I are forever grateful for each and every one of you that chose to donate. You all hold a very special place in our hearts and beyond thankful for your generosity.
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