Last night we celebrated two years of health. Two years of thriving. We’ll never forget the team of doctors and nurses that saved our little girl and the friends and family who kept us from falling apart.
I needed that quote 2+ years ago when I was f-ing terrified of Hannah’s diagnoses. Down syndrome and a heart defect seemed insurmountable back then. I remember sitting in the hospital’s cafeteria with my dad one day after Hannah was born, telling him I hated when people said that Hannah was lucky to have parents like me and Pete. I was so sure we were going to fail that girl.
I had extreme anxiety leading up to Hannah’s heart surgery in the form of horrifying nightmares and struggling to breathe at the thought of the impending procedure. The anxiety subsided once her surgery was over but I still went into every doctor’s appointment with overwhelming fear. Fear of another surprise, fear that there would be something else wrong, fear that the 47th chromosome would keep messing with our baby. As Hannah grew and we learned more about our little girl we settled into this beautiful life. We did not fall. We soared.
I’ve become a believer that the Universe sends signs to guide us, warn us, encourage us, etc. Six months ago I was given a rose gold heartbeat necklace shortly before Hannah’s cardiology appointment. It was the appointment where the doctor told us Hannah wouldn’t need surgery if her condition didn’t change. I should have recognized the new sign when I found this bracelet a couple weeks ago and just had to have it. I should have known what it meant – surgery is back on. It’s frustrating and really really scary to feel like your daughter’s heart can change as easily as the weather forecast. The doctor can’t give us any timeline but confirmed another surgery is unavoidable.
So here we are again, standing at the edge of the great unknown. Waiting for the cue to jump. Waiting to see if we fall or fly.
I used to write all the time – on Post It notes at work, on Dunkin Donuts receipts in my car, I’d send myself emails if I didn’t have a pen and paper. There were so many thoughts I wanted to remember ever and feelings that I wanted to release. Lately I haven’t even been able to write a grocery list and it all started after Hannah’s last cardiology appointment. The month we waited for her sedated echo somehow flew by in the most painfully slow way. The days were short and the weeks were long but it was finally 6 am on a Thursday morning and time to leave for the hospital.
The appointment went surprisingly well, all because Hannah is the greatest kid ever. Even though she hadn’t eaten in over 12 hours she was still happy and silly while ninja rolling across the adult-size bed. After we sorted out which sedation medication to use (the doctor let us choose) and Hannah fell asleep (in 3 minutes instead of the typical 20-30 minutes) the echo took place and lasted over an hour. Our cardiologist was on vacation but another one came in to check the images and give us zero information on what she saw. The anesthesiologist and nurse were expecting Hannah to be awake by then but it was at least another 15-20 minutes before she started to open her eyes. Once the nurse finally believed us that Hannah wasn’t going to drink apple juice we were allowed to give her a small bottle before being discharged.
Our cardiologist called early Tuesday morning to give us her report: accelerated blood flow, moderate blockage of the valve, but no damage to the valve. She felt surgery was not urgent and could be done at our “convenience” but she wanted to prevent Hannah’s case to the cardiothoracic team at the end of the week to see if anyone disagreed. Friday afternoon rolled around and we were given the best news ever…
Hannah doesn’t need surgery yet or possibly ever.
She’ll be monitored every 6 months to see if the scar tissue continues to grow or if the accelerated blood flow damages the valve. Hannah has no idea why she was hugged so tightly that day but the rest of us immediately felt relief from the anxiety.
Last week my BFF Tori and I left our kids with their fathers and grandparents and headed to Vermont for a few days of yoga, music, relaxation, and fun. We had such a good time that we were already mentally planning next year’s trip. I even took an extra day off from work and went to the beach with Hannah, Grandma, and Pete’s brother. I woke up high on life and completely refreshed Tuesday morning. I was actually looking forward to Hannah’s cardiology appointment because her last one in November resulted in a clean bill of health.
I let my guard down and the Universe came in swinging and knocked me on me knees. Life has a funny way of being a total bitch like that.
Hannah has scar tissue, called a subaortic membrane, that has grown significantly since her last appointment. Her cardiologist failed to mention its existence in November so it came as quite a shock. The scar tissue causes two issues: the heart has to work harder to pump the blood out to the body, and the high-pressure jet of blood can also damage the aortic valve. Look for the black arrow in the picture below for a visual.
The solution? Open heart surgery within the next six to twelve months.
The first step; however, is a sedated echocardiogram to get a better idea of the actual size of the membrane. We have to wait until the end of July for that because the hospital only performs them twice a month. Until then we’ll wait, and pray, and continue to have a badass summer with our little love.
I thought I could do it. I really tried. For months I sat in front of the computer and tried to write an uplifting account of Hannah’s surgery and recovery. The problem is that my mind always raced through the days, my stomach tied itself in a knot, and my fingers refused to move. All I could feel was the fear, the anxiety, the overwhelming relief. Most days, the experience of Hannah’s surgery hurts more now than it did a year ago.
In the hospital we lived minutes and hours at a time. We distracted ourselves with a big breakfast, magazines, and naps during the surgery. The first days of recovery we kept busy talking to the nurses, doctors, and therapists, then texting and emailing friends and family with quick updates. There was no time to think about what could happen.
I wish I had the foresight to write down a summary of each day’s events. My memories of those days are a mess – blood draws, beeping machines, a collapsing lung, the panic on the nurse’s face as Hannah woke up from sedation, and the matching terror on Hannah’s face. Maybe if I could look back on those notes I could remind myself that everything Hannah experienced was “normal,” instead of letting the “what if ___ happened” consume my thoughts.
Sunday June 12th was the first anniversary of Hannah’s surgery. It was supposed to be a joyous day with a celebratory dinner at Grandma & Grandpa’s house (complete with a new stuffed animal and balloons). The reality is that Hannah was on day two of a 104* fever, completely comatose when the Advil wore off but a total animal after a fresh dose. We couldn’t tell what was wrong and our little warrior tried to play it off like no big deal.
Then at 3 am Monday morning we witnessed the one thing we were so deathly afraid of prior to surgery. Hannah was inconsolably crying in my lap and when Pete turned on the light we saw our sweet baby girl with blue lips and so pale that she looked purple. The pediatrician’s old warning “If her lips are blue take her to the hospital” rang through my head.
Thankfully the ER wasn’t busy when we arrived so we were taken to a room almost immediately. Hannah had a urine test via catheter, a lung X-ray, and two blood draws by heel stick. She barely cried and looked like she just wanted to sleep through it all. Occasionally she’d give a quick half smile under the pacifier to let us know she was alright. A few hours later we left the hospital with a shot of antibiotics, half a diagnosis, and a suggestion to see our own pediatrician. Another couple of hours later we finally had the official diagnosis of pneumonia.
Banana recovered very quickly once she was on antibiotics and was almost back to normal the following day. We finally found a medicine (amoxicillin) that Hannah loves so much that she whines when it’s gone!
The first anniversary of Hannah’s heart surgery is approaching so I’ve been pushing myself to finish posts that I’ve been working on for months. I’m hoping to have them all done by June 12, to be forever known as Hannah’s Heart Day.
The nurses and doctors knew something was wrong right after Hannah’s birth. It clearly wasn’t serious enough for them to take her from us immediately because they still cleaned her up and let Pete hold her before whisking her off to the nursery. The issue was her low oxygen level – something they couldn’t accurately diagnosis at that hospital. The pediatrician told us it could be a lung or heart issue. That was the only warning we had that our little girl could have a heart defect, and I remember the exact moment when the warning become reality.
Hannah had been taken to the children’s hospital, I sent Pete and my parents home, and I was alone in my hospital room when my cell phone rang. It was the doctor that accompanied Hannah on her ambulance trip, a pretty Indian woman who I thought seemed much too young to be a doctor already. She said “We confirmed your daughter has a heart defect. We will have more information tomorrow. Also, she’s hungry. Do we have your permission to give her formula?” It all felt like a dream.
It was nearly 36 hours before we sat down with the cardiologist to learn more about the defect. According to Boston Children’s Hospital, an AV canal defect occurs in 2 out of 10,000 births (0.02%). However, 50% of babies with Down syndrome are born with a heart defect, about 20% of which have an AV canal defect.
The doctor explained that even though Hannah’s heart defect was considered congestive heart failure, she wasn’t a “blue baby” or at risk of going into sudden heart failure. Her symptoms would worsen over time and we’d see the pediatrician or cardiologist every two weeks, who would help monitor Hannah’s progress. Visiting nurses would come twice a week for weight checks and medication would be needed to delay the inevitable surgery.
These were the main symptoms that Hannah experienced:
Fatigue – As a newborn, Hannah could easily sleep for 5-6 hours between feedings. Once she became more active and hungry during the day, she stopped waking up a night to eat. Unfortunately, Hannah never learned how to soothe herself to sleep because she’d just pass out wherever she was.
Tiring while feeding – This was our main struggle. Hannah often fell asleep mid-feeding because the simple act of taking in calories exhausted her. She eventually quit breastfeeding because it was too much work. During the two weeks before her surgery it became more difficult to get her to finish a bottle.
Poor weight gain – According to the nutritionist, infants gain about 20-30 grams a day but Hannah was averaging 10. She was burning most of her calories on breathing, eating, and growing lengthwise. We started fortifying breast milk with formula once Hannah was more active and gradually increased the amount every month. By the time surgery was scheduled, the milk was so thick from formula that it looked like a milkshake.
Sweating – Memorial Weekend was the start of the sweating, which was the cue to us that she wasn’t doing well. I remember one day she was sleeping in my lap and my pants were soaked through from her sweat.
Other symptoms – Rapid, heavy breathing; rapid heart rate; cool, pale skin
Hannah started the two medications within two weeks of leaving the hospital. The first was fuorosomide, a diuretic, that pulled excess fluid out of Hannah’s body and lungs, which helped her breathe easier. The second one, Captopril, treats high blood pressure and heart failure. For Hannah, it allowed more blood to flow through the aorta which lessened the extra blood flow to the lungs. The dosages were increased every few weeks as she slowly gained weight and needed more assistance to stay comfortable.
The truly amazing part of the whole ordeal is that you never would have guessed, just by looking at her, that Hannah was sick. Nearly every day of those 3 1/2 months she was a happy, curious, funny little lady.