This weekend last year we knew Hannah’s heart condition was getting bad. She was so tired, so sweaty, she quit breastfeeding, and could barely drink a bottle. I look back at the pictures from one year ago and want to cry at how small and pale she looked.
It’s amazing what heart surgery and 365 days can do for a girl.
Come on! Isn’t she the most beautiful child you’ve ever seen? We had such a blast with her this weekend at the farmer’s market, swimming pool, friends’ house, and playing in the backyard. Even at the grocery store she had me laughing so hard by making faces and giving me sloppy kisses, then staring creepily at an employee to get his attention.
Hannah was a seriously busy kid last week. Her cardiology appointment ended up being cancelled and rescheduled for June thanks to a coxsackie attack but she still had a visit to the pediatrician, audiology, ENT, plus an Occupational Therapy and Speech Therapy consult.
The pediatrician appointment went really well. Hannah finally hit the 20 lb mark! The doctor was extremely impressed with how much progress Hannah made in three months (back when she was still hating tummy time and gagging on thicker food). Our immediate action item was to drop Hannah down from four 7 ounce bottles a day to three 7 ounce bottles, then slowly decrease them to six ounces. She said we’re filling Hannah up with milk/formula and not giving her an opportunity to eat more and transition to a schedule of meals and snacks. Surprisingly dropping a bottle during the day has gone smoothly so far. The remainder of the appointment was discussing what Hannah’s doing with Birth to Three, which the doctor said seems to be a great relationship. One shot later and we were home and Hannah was in bed before The Bachelorette.
The next day Hannah had a double header with audiology and ENT. Hannah did a near-perfect job responding to the audiologist’s voice but tended to only look to the left when sounds were played. It’s hard to say if Hannah couldn’t hear them or was ignoring them because sometimes she made faces when the sounds played. Even though Hannah didn’t “pass” the hearing test it’s not a concern of ours right now. She turns when she hears a cabinet door close, when Gamy walks by, and selectively listens to me and Pete.
We knew this was the ENT visit where we’d find out if Hannah would need ear tubes and I already accepted the fact that she would. The fluid is still in both ears and has shown no signs of clearing up. Even though it’s not causing ear infections it makes the world sound muffled to Hannah and could cause speech issues. The surgery won’t be for at least another month so that the anesthesiologist will have the most current cardiology report.
Hannah also had OT and ST consults with Birth to Three. Speech was a suggestion by Maureen because Hannah has been hitting all the pre-communication benchmarks and she’s wanted to see what a specialist recommended. Thankfully for Hannah’s schedule the ST didn’t think Hannah needs any one-on-one time yet. Right now we just need to keep working on sign language and make sure we’re giving Hannah about 30 seconds to process our words before we help her sign back. The OT appointment was to work on Hannah’s oral motor skills. Even though eating has become significantly easier and Hannah actually wants our food, she seems to be misunderstanding the chew + swallow process of eating. The OT will be visiting once a month for now and the pediatrician also recommended two local facilities that could help if needed.
I’ll leave you with these adorable pictures of Hannah that we took while waiting for the appointments to start…
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.
Holidays, whether legitimate or of the Hallmark variety, always make me reflect on the last few years and Mother’s Day is one that has changed tremendously. Mother’s Day 2014 was the day we originally planned to tell the future grandparents that we were expecting. Instead I spent the day in an emotional fog, haunted by our recent loss. On Mother’s Day 2015, my Dad watched Hannah while Pete and I went to a movie. I must have checked my phone a dozen times to make sure there were no missed calls from him. At that point Hannah’s health was started to deteriorate and I found it difficult to celebrate motherhood in a state of uncertainty.
Mother’s Day this year, my goodness, it was great. I eagerly went to yoga in the morning, leaving Hannah with Pete and his family, and arrived home to an empty house which allowed for an extra long shower. Then Hannah took a three hour nap so I could do laundry and dishes without feeling guilty that I wasn’t giving her my full attention. Pete gave me flowers. We spoiled our dinners with late afternoon milkshakes from McDonalds. Most importantly, Hannah was healthy.
I found myself wanting to celebrate Hannah and Gamy more than myself. After all, they’re the ones who made my lifelong dream of motherhood come true. Because of them I can ask “what’s in your mouth” and “what’s that smell” at least once a day. Because of them I laugh like I never have before. Because of them I love like I never knew I could. Because of them I can feel every muscle fiber in my heart straining to find a little more room for the smiles, the cuddles, and the look in their eyes that tell me they feel it too.