Today, February 6th, is Drew’s 8th birthday! Eight! Happy Birthday, Drew! So, in honor of his birthday, I wanted to share his birth story.
We had a planned C-section in Nashville, Tennessee at Vanderbilt. We knew of his syndrome as early as just a few months into the pregnancy and the disorders that came along with it including a blood disorder in which put him at high risk for a hemorrhage. So, our only option was C-section which would provide the team the ability to transfuse platelets prior to birth to eliminate most of the risk. It was scheduled a week earlier than his due date of February 13th because they didn’t want me to go into natural labor so far away from the specialists in Nashville, three hours away.
February 5th was my last day of work before my maternity leave and I intended on working the full day, but the weather forecast was pretty scary with tornado watches and severe weather all throughout western Kentucky and central Tennessee so I actually left early that day in an attempt to beat the weather. Nathan, his mom, my mom and I loaded into the car and began our trip. It was so exciting! It seemed so surreal that our family would soon be such a different dynamic than what it was just 24 hours ago!
Well, the weather forecast proved to be quite severe. It was through horrendous rain and storms that we made it to our hotel with tornadoes being spotted all around us. Turns out, 58 people were killed in tornadoes all around Nashville. We checked into our hotel and prepared for the early morning.
We arrived at the hospital on time and we waited in the waiting room at Labor & Delivery for not very long before we were called back. I was put into a gown, the attached all of the monitors and completed all tasks leading up to the delivery. The most vivid part of the wait was the required spiel to inform patients of everything that can go wrong. An abbreviated version:
“We may cut the baby. There is a risk of heavy bleeding that may require a hysterectomy. You might die. The baby might die. The world may end. Circus elephants may stampede your family and everything you’ve ever loved.”
I cried hysterically throughout their speech needless to say. But, unfortunately, it’s the law that they scare the living daylights out of patients to avoid any misperceptions about the risks and following lawsuits.
I was taken into a cold room with approximately 10-12 nurses, doctors, specialists. I was given my spinal and was quickly completely numb from my chest down….and I mean, completely numb. I literally had no movement at all. I swear, they could have just sawed me completely in half and I wouldn’t have known any better. Nathan was brought in and they got started.
The plan was to expose some part of his body, draw blood prior to pulling him out, and test the platelet level. Pending the level of platelets, a transfusion may be needed to boost his levels. So, they made the incision and drew the blood and a technician took it to the lab for an evaluation stat. We just twiddled our thumbs while we waited. It took about 10 minutes.
His levels came back just a hair over the safe level so they determined a transfusion wasn’t needed so they completed the procedure and pulled him out. I don’t know why, but I didn’t expect him to cry. Well, I guess I do know why: during my previous delivery of a live baby, he didn’t cry due to a lot of medical complications including being premature. So, it didn’t occur to me that Drew would either so it was a massive surprise to hear his cry!!! I was stunned! Nathan left my side to look at him and take pictures so he could show me.
Of course, I was extremely interested in what his arms looked like. We spent nine months discussing them and learning about TAR, but I guess I hadn’t really grasped the reality of it. I looked at Drew through the screen on the digital camera and it was finally real.
They took Drew to the NICU and Nathan followed. As the team finished up my C-section, I was beginning to show distress because the massive pushing and tugging and pressure as they finished was too much to bear. The last thing I remember was the anesthesiologist saying, “We’re going to give you some pain medicine through your IV.”
The next thing I remember is waking up on the recovery room. A nurse beside me writing in a clipboard. My mother-in-law was on the other side. I asked numerous times about the whereabouts of Nathan and my mom and she told me each time they went out to get a smoke, but being heavily sedated and woozy, I could never quite remember what she said even 30 seconds later. Eventually, I came completely out of my stupor and I was soon wheeled into a recovery room.
The rule was that I had to be able to stand on my own before I could go see Drew in the NICU. The pain was horrendous. My incision felt like it was literally on fire. Any small movement felt as if my body was ripping apart. I could not believe that women chose elective C-sections (and, I don’t mean that in a ‘you’re-less-of-a-mother-and-damaging-your-baby’s-aura’ way, I mean in a ‘why-choose-unbearable-pain-over-no-pain’ type of way.) My previous deliver was natural and I was up and walking comfortably pain-free within 30 minutes. As I twist even the most minute way, the intense scorching pain made me just want to die. But, I was determined to see Drew so with every ounce of strength I could muster, I stood. It literally felt like all of my guts were going to burst through my incision and fall to the floor at my feet.
So, Nathan wheeled me to the NICU to see Drew for the first time. He was in an enclosed incubator. He had wires and tubes and tape everywhere. I have to admit: I did not think he was cute! LOL I was actually kind of disappointed. I dunno…maybe it was the drugs, but he looked so swollen and red and he had no neck. But, none-the-less, I stayed for as long as possible. He received multiple transfusions his first day and we learned for the first time that he had some heart defects, though mild.
I didn’t get to hold him until the next day and it was finally then that I felt bonded to him. We got to give him milk in a bottle. We got to change his diaper. Nathan and I spent every possible moment with him.
Leading up to delivery, we were told to expect him to stay in the NICU for five-six weeks so we
Our faces upon hearing the news
didn’t bring anything – a car seat (which we hadn’t even purchased yet), baby clothes, etc. – to the hospital. So, imagine our surprise when they said they were going to discharge him the next day! Nathan and his mom made an emergency trip to Target for everything we needed.
The next morning, we packed up everything and new baby and we left the hospital. I sat in the back to just marvel at this beautiful boy next to me. I couldn’t take my eyes off of him. We stopped at Cracker Barrel in Clarksville, TN and had lunch and finally made it home.
Drew was quite distressed when we got home. He seemed to be bothered by a rash that he had had while in the hospital and the staff gave me directions on what to do should it cause problems, but the drugs and excitement seemed to have made me forget so I had my first panic attack as a mom with a newborn. I just couldn’t think straight. Nathan suggested that I call the pediatrician on call (it was late when we got home) but I knew how this was going to go:
Me: “Hi. I have a three-day old baby who has an extremely rare syndrome including heart defects and a critical blood disorder. He has this rash and I’m not sure what to do.”
Doctor: “Uh…you need to go to the ER.”
But, I knew the rash wasn’t critical. I could remember the nurse saying it was normal, but just couldn’t remember what she said about helping. My mother-in-law kept suggesting to put lotion on him, but I was coherent enough to know that putting anything with alcohol on his rash probably would cause pain. I don’t recall exactly how we resolved the issue, but evidently we did because he didn’t die. 🙂
The first few weeks were quite nerve-wracking. First, I found that I had an irrational fear of him dying. And, by irrational, I mean it consumed me. I was probably suffering from a form of PTSD as a result of my previous losses. I would check on him sleeping every 10 minutes. I was convinced he’d stopped breathing or someone had snuck through a window and taken him. One night, I laid him on the bed with me and Nathan and I must have drifted off to sleep. Next thing I remember was startling and in a panic I shot up looking back and forth for Drew sure that I or Nathan had just smothered him only to be put at ease by Nathan who had politely moved him.
I recall another time that I was convinced a hospital was conspiring to remove Drew from my custody. Because of Drew’s short arms and clasped hands, his hands always reeked. I’d have to wash them and put baby powder on them to keep them dry, but it never took long before they stank. So, I was beside myself in hysteria that the nurses were contacting CPS to report child neglect. I cried so much at the thought of someone taking him away and a tragic loss of an infant before contributed to this irrational fear.
His blood disorder was much more critical than than it is now. He required platelet checks every few days so each time, we had to drive the three hours to Nashville to see his hematologist. I vividly remember his first one. He was about a week old. We’d only had him home for three days. The nurses drew some blood from his heel and his platelets were much too low so a transfusion was necessary. As they worked on the IV, Drew was hysterical and he’s laying on the bed in front of me in extreme distress and I can’t pick him up and comfort him. Gosh…even recalling this now is getting me emotional. I was uncontrollably crying..I’m talking, hyperventilating, snot pouring out of my nose crying. It was so difficult watching him just wanting to pick him up and cuddle him until he felt better.
They finished the transfusion and we made our way home relieved that was over. Despite having a bandage on over where the IV had been placed, Drew bled like a stuck pig, a result of his blood disorder.
We made two trips to Nashville and back for the first two months (that’s SIXTEEN trips, people) for platelet checks and transfusions. He had a transfusion once a week for two months totaling 8 transfusions. Luckily, his blood disorder stabilized fairly quickly for a TAR baby. Some babies get weekly transfusions for a year or two. Lucky for Drew, he was able to maintain a level just above the acceptable level on his own. But, it was extremely nerve-wracking knowing your baby is just a hair above the safe level. Every jar to his body, or playful swing in a loved one’s arms made me worry he’d suffer a brain bleed.
The first few months were the hardest, even having been admitted to the hospital for two weeks because of a urinary tract infection that went to his blood (which also made me fear losing him to CPS for neglecting his medical needs.) But, we learned our way thanks to close family members and online support from other TAR parents.
In eight years, he’s:
- Been to Disney World
- Been to Boston, MA, St. Louis, MO, and Florida
- Had 2 open heart surgeries
- Had 7 leg surgeries
- Had his tonsils/adenoids removed
- Had a portacath put in
- had 4-5 sets of ear tubes (this is 15-16 surgeries if you weren’t counting)
- Had two external fixators and 13 months of adjustments and healing.
- Walked for the first time when he was 5 years old
- Halfway through second grade
- Won 1st place in a lip sync battle
- Became a big brother
UPDATE 2/6/17 –
It’s been an amazing eight years and I would do every minute of it again! I’m so lucky to be his mom. Happy Birthday, Drew!!
On a separate note, I put this compilation of videos and pictures of Drew’s journey to walk in a tribute to how inspiring he is as well as a token of appreciation for Dr. Paley and the Limb Lengthening Institute for working on Drew and performing a miracle!
And, I’d be remised not to remind you that we’re still raising money (discountined 2/’17) for our upcoming trip to Florida for Drew’s leg surgeries in May. We’ve broken $1,000 but we still have $2,000 to go before reaching our goal. Thanks to all who have contributed and we’d appreciate it if you could share with your friends and family and let them know how amazing Drew is!