I was talking to my new helper, Amber, today about health insurance and I explained to her that "you never want to have to use it, but, just in case, you'll be glad you have it"! I told her how we never thought we would really need it, other than for delivering the twins ... but, then explained to her that our medical bills for Ian reached about $150,000 in just his first 2 months of life. Talking to her, I was overcome with remembrance of those first few months of life and I felt compelled to get those thoughts "in writing" before they slipped my mind again.
As we are preparing for the children's 2nd birthday party, I continuously reflect in my mind on where we were, how far we've come, and what lies ahead. I remember laying on the table at the 20-week ultrasound as the tech looked diligently, measured methodically, and worked in silence - it was clear that something was wrong and she was nervous. She tried hard, but, eventually relegated herself to getting a 2nd opinion so the 2nd tech arrived and she, too, stayed focused and worked hard. However, it was clear that a 3rd opinion would be required - in walked the doctor and he started performing his duties in total silence. Of course, we had no idea what was going on; I prayed ... hard. I was so naive, though; I had no idea what could be wrong ... the whole idea of a child growing in the womb hadn't really sunk in with me yet - I mean, I had plenty more weeks of gestation to go to understand how the nervous system, the central system, the bone structure - how they all developed. Well, it was clear that everyone was scared! The doctor asked me to "get dressed and go wait in the exam room; I'll be in there in a few minutes to talk to you!" What a long wait that was? It probably wasn't more than 5 minutes, but it seemed like an eternity. Of course, thinking back on it now, he needed time to prepare himself for the conversation with us, I'm sure. He walked in with 2 pictures - 1 of a fully-developed heart and 1 of Ian's heart - the diagnosis, Truncus Arteriosus. Now, keep in mind that at this point, Ian's heart was as small as the tip of your pinky finger - to differentiate anything inside of it was shocking to me; to diagnose a congenital heart defect was short of miraculous! He explained the diagnosis (no pulmonary artery had developed) and our options - which there was only one for us - deliver him at a hospital with the best surgeons and staff so he had the best chance at survival ... yes, survival! We weren't concerned about quality of life at this point; simply about him not dying! I took it all in - Stewart was strong as one of us had to be - I bawled my eyes out! I left on wobbly legs and felt like the sails had been completely knocked out of me. I didn't want to talk to a soul - no one! I just needed time! I remember riding away from the doctor's office, in shock, of course, completely overwhelmed. Stewart called my mom and broke the news to her - she was strong, as usual, and simply said, "We'll handle this! What do we need to do?"
A few days later we met with the pediatric cardiologist and he confirmed the diagnosis! I remember walking into the house; for some reason, I went downstairs and at that moment, God literally spoke to me ... I hit my knees in a total meltdown and, within minutes, I was completely comforted by His love for me. I knew right then and there that it would all be okay - not that the outcome would be my desire necessarily, but that I would survive with Him walking right beside me. It took me a few days to completely digest this incredible feeling; I still avoided everyone, but, finally, I was ready to talk - to take on the issue head-on and have the most positive attitude I could! I prayed constantly - I remember that a friend had given me a bracelet that said "Pray" on it and I wore it all the time as a reminder - everytime I looked at that bracelet, I spoke to God and asked that he prepare me for His will that would be done.
5 weeks later, we went to visit MUSC in Charleston. We never thought that we would really deliver there because it was located in the 49th state in education, of course; but our pediatric cardiologist asked us to go there. In fact, he said specifically, "Stewart & Jennifer, I will support you no matter where you decide to deliver and I will help you to get into any hospital in the US. But, before you make any decisions, I ask that you get the stats from wherever and compare them to MUSC. They are the best!" "Blah, blah, blah! Sure, doc, we'll go see them!" Well, it didn't take long for God to humble us again as it was clear to us within hours of our arrival in Charleston that MUSC was the place for us! And, with God's watchful eye, nothing short of a miracle had occurred inside the womb - a pulmonary artery had formed! The diagnosis now was Tetralogy of Fallot - a much more common diagnosis with higher survival rates! Oh, what a blessing!
And, as you know, Charleston turned out to be a great fit for us and our family! I delivered at 37.5 weeks via c-section (that's another blog post in and of itself - ha!) on July 22, 2008. Bonner weighed 7 lbs 11 oz and Ian, 6 lbs 12 oz. She came home at 5 days as we hunkered down in the PCICU with Ian. The days are a blur ... the B-T Shunt was placed inside of Ian when he was 9 days old. He recovered pretty quickly; however, he took a nasty turn for the worse on his first day in the step-down unit. To this day, we have no idea what happened; he was as pale as a ghost! I looked at the nurse after Stewart had complained for several hours and said, "I'm telling you right now that my son will be dead in about 10 minutes if you don't do something!" I have never seen people move so fast! Head cardiologists, fellows, nurses - they had everything unhooked, his steel crib out of the room, and intubated 2 floors down back in the PCICU within about 7 or 8 minutes. It was awful! I was so scared! But we had a daughter to focus on; and in that dark moment, she was such a blessing! I'll never forget that we had to leave the hospital because we no longer had a patient to see on 7C and it was shift-change in the PCICU ... we ended up taking Bonner to her first cover band show at Wild Wings Cafe for dinner ... crazy how that happened! Neither of us could eat; and Bonner slept right through the band! We returned to the hospital after dinner and I just couldn't bring myself to go up to see him - he had looked like the dying ET when he was whisked away so quickly; Stewart had to go for me; I just couldn't! Stewart came back and said that he looked better and that they had started him on 3 different antibiotics to try and tackle whatever had caused his episode...oh man, what a night! But, again, there was comfort as God reminded us throughout the ordeal that He was with us - He had us "right where He wanted us!"
The next few days were touch-n-go; Ian slowly showed improvement and after a week, we were back to 7C where we never left his side again! We spent several nights there trying to remember how to eat ... oh, to eat; "please, Ian, just eat"! Well, the lightbulb finally went off at 2 a.m. Thursday night - 5 hours before we were supposed to get on an airplane for a flight back to Greenville. I had begged that if the only thing keeping us in Charleston was eating then could we possibly do that in Greenville ... surprisingly, they had figured out a way to make that happen! We flew home anyway, and only had to be at GHS for 2 nights. Finally, we were all home as one family!
These past 22 months have blessed our lives beyond measure. I never really blamed myself for what happened to Ian - it fell in line with statistics of boy/girl twins; and, after reading this by Erma Bombeck, I realize quite clearly that it fulfills God's plan! Thanks for "listening" to my rambling and for being with us every step of the way!
The Chosen Mothers
By Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with life threatening illnesses are chosen?
Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."
Finally, He passes a name to an angel and says, "Give her a child with an illness." The angel is curious. "Why this one God? She's so happy."
"Exactly" smiles God, "Could I give a child with an illness to a mother who does not know laughter? That would be cruel."
"But, does she have patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she will handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she believes in you."
"No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps. "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see... ignorance, cruelty, prejudice... and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."
"And what about her patron Saint?" asks the angel. His pen poised in mid-air.
God smiles, "A mirror will suffice."
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