February 5th 2008
It is my last day of work before the start of my maternity leave. I intend to work the full day and even enjoy my boss and colleagues throwing me a surprise baby shower at work, but due to severe weather in the area, I had to leave early in attempt to beat it for we had a scheduled C-section at Vanderbilt Hospital in Nashville the next morning. Nathan, myself, my mom and Nathan’s mom make the scheduled trek to Nashville all the while experiencing heavy downpours and tornado warnings all throughout western and central Tennessee. Even as we check-in our hotel, tornadoes ravage Tennessee and Alabama. We settle in for the night and think about the big day tomorrow.
February 6th 2008
We wake early in the morning, excitement thick in the air. We arrive in the labor and delivery floor and wait to be called back. After getting a bed, they do the standard preparation for an operation: IVs, baby monitor, vitals, etc. Though we had many weeks of geneticist and specialist visits to learn about our new baby and his condition, we really didn’t know what to expect. When we first learned of Drew’s condition, the information on his extremely rare condition was old and outdated so we weren’t sure at first if Drew would even survive birth. To better his chances, a C-section was scheduled. Because of the expected blood disorder, a natural birth could potentially harm the baby so we were here for a planned C-section.
In the minute prior to rolling me out of the room into the operating room, the nurse was going through their liability statement describing the potential for heavy bleeding, injury to the baby, trauma, etc. and I bawled my eyes out the entire time. This was no pep talk to ease my fears. Finally, I was in the operating room, epidural administered and the C-section began. There must have been 10 doctors in the room: the surgeon, a perinatologist, anesthesiologist, nurses, NICU team, etc. After making the incision and before pulling Drew out, they actually had to withdraw blood from Drew in order to test his platelet levels to determine if a blood transfusion was necessary prior to pulling him out. They rushed the blood off to the lab and we waited. Results came back within 10 minutes and he was given a green light to be removed as his platelets were just a hair above acceptable levels.
I didn’t expect any crying since I had gone many weeks being told how critical he’d be, but it turns out, Drew had a healthy, robust cry and it was like music from angels. I was behind a blue curtain and couldn’t see anything, but Nathan was craning his neck. He was allowed to get up and go take a look at him as they prepped him. Of course, we were very curious about the look of his arms. Nathan snapped a picture of him and brought the camera over to show me. As the staff was closing the incision, I began to feel pain and I was restless so the anesthesiologist said he was going to give me some more medicine in my IV and the next thing I remember was waking up in the recovery room.
It was a couple of hours before I got moved to a regular room and I was anxious to see Drew. But, I wasn’t allowed until I could stand up on my own. I fought hard and I managed to fight back the pain and stood. Shortly thereafter, I was wheeled in a wheelchair down to the NICU.
Upon seeing Drew, I have to admit (and I’ve never told anybody this before), I did not think Drew was very cute. He was so swollen!! He looked bloated. He had no neck and he just looked so….puffy. And he had wires, and tape, and electrodes, and IVs on all surfaces of his body. He was in an incubator. He had already had one or two blood transfusions as his levels had dropped pretty quickly after birth. Even though he looked so sickly, we were allowed to hold him. Nathan and I took turns, we fed him a bottle. We changed our first diaper.
The next day, we visited Drew some more. We learned he had a defect in his heart which we didn’t expect, but it actually was pretty minor, though he’d need to be followed by a cardiologist. We held Drew as much as we could and one of us was in the NICU almost every minute.
We were told that he’d be in the NICU for five to six weeks so we were really surprised on night two when they said he’d be discharged from the NICU to a regular nursery followed by discharge from the hospital shortly after. We were especially shocked because we came with nothing since we anticipated a five to six-week grace period. Nathan rushed off to the local Target to purchase a car seat, baby clothes, etc.
And, before we knew it, we were walking out of the hospital with our new baby boy. We drove home, with me in the backseat next to Drew. We stopped at Cracker Barrel in Clarksville and had lunch. And, we made it home. It was icy due to a recent winter storm which made me, days from a C-section, wince with pain with every slip.
Our first night at home with Drew was pretty exciting. He had a rash of some kind that the doctors had explained to us. I don’t know whether it was pain medicine or what, but I couldn’t remember anything about it. I was very upset with confusion and concern for Drew, but Nathan and his mom calmed me down.
I remember checking on Drew every 20 minutes while he slept, which was A LOT. Call it new mommy fears or even lingering fears from losing a previous baby boy, but I had the most intense fear that Drew would die or be kidnapped (after all, he was so cute now!)
The first weeks were filled with dozens of doctor appointments ranging from pediatricians, cardiologists, hematologists, etc. We made trips back and forth to Nashville at least once a week for the first two months, sometimes twice in a week. His blood disorder was most critical during this period and he required frequent blood transfusions. I remember the very first blood check and transfusion after his hospital stay after birth. I cried uncontrollably watching them stick my baby’s foot with a needle and then hook him up to a pump to slowly transfuse platelets. At the time I rejected the thought of documenting these horrible and unfair transfusions, but now I wish that I had captured pictures. That was an important time in his life. I’m sure that the hormones didn’t help my emotions at all.
Drew has been through more in his six years than I could possibly recount with 100% accuracy. Since birth, he’s had:
- around 15 blood transfusions
- 8 (? – so many that I’m even having trouble remembering if we were admitted or just out-patient stuff) hospital admissions
- 13 surgeries (6 corrective leg, 2 open heart, 2 sets of tubes, 1 removal of a tube,1 circumcision [which was done later in life, under anesthesia, because his blood disorder at birth prevented him from non-essentials], 1 sigmoidoscopy….and a partridge in a pear tree)
- more than 100 x-rays and platelet checks.
- more than 220 physical therapy appointments
- more than 100 various doctor appointments
All in all, this averages to be about one medical event every six days his whole life. This is more than any kid should have to endure, but he has come through it with determination and strength. He has overcome dozens of challenges from having shortened arms that deceived all of us into thinking he would be dependent on us for the simplest of tasks to having malformed legs that tricked us into thinking he’d never ambulate on his own. But, as if his arms weren’t an issue at all, he learned to feed himself and play video games and he hopped around on his butt and even rolled around on a toy truck and he always managed to keep up, if not at times outrun, his peers. He has inspired many and impressed everyone with his adaptability, courage and positive attitude.
Though he’s experienced more pain that I could possibly imagine, he’s gone from this:
and a lot of times this:
and it was a big celebration for this:
2 Comments Add yours
I am in tears…such a hard fight for a little boy and what a miracle he is!
What an amazing boy you have! I was struck how he smiles so much. It is obvious he is going to make a difference in this world. G-D bless you all xx