Life with Hannah Banana Lately: 20 months

Every single day with our little toddler is full of laughs, smiles, and sloppy kisses. Hannah is so busy and continues to astound us with how quickly she’s learning and challenging herself to do more.

Eating – Banana goes through phases with eating. On good days she eats almost everything for breakfast, lunch, dinner, and her snacks. On bad days she eats mostly cheerios and Goldfish.

With only six teeth Hannah still struggles with chewing so we’re sticking to foods that can be mushed easily. The current go-to options are turkey or chicken meatballs, fish sticks, veggie burgers, veggie or potato pancakes, breaded broccoli bites, and steamed veggies.

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We introduced food pouches a couple months ago when Hannah began to refuse spoon-fed food. At first we had to squeeze the purees into her mouth until one day Hannah started to drink from them herself. Now the girl can down one in thirty seconds! I bought a pouch holder on Amazon to see if it prevents Hannah from squeezing all the contents out.

Birth to Three – We updated Hannah’s plan this week since the previous plan’s goal was for her to crawl. Even though she’s still doing a pirate crawl we’re going to accept it and move on. For the next six months we’ll be focusing on getting Hannah to play with more age appropriate toys like shape sorters and puzzles, “cruise” along furniture when standing, and continue to improve her communication with the addition of a Speech Therapist.

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Daycare – The transition to the toddler room has been a slow one but Hannah should be over there full-time as of the beginning of November. Right now she’s in the toddler room for a couple hours, usually during circle time and snack time so she can eat with her peers. She’s still napping in the infant room but sleeping well on the cot.

Sleep – I don’t want to jinx us but Hannah hasn’t woken up in the middle of the night in weeks, maybe months. We pushed bedtime back a little bit, starting the routine at 7 instead of having Hannah in the crib at 7 because, night after night, she was crying in the crib and not falling asleep until after 7:30 anyway. Now we do jammies, a bottle, a song, and she’s snoring within minutes of laying down.

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This is comfortable sleeping in Hannah’s world

Playtime – This kid is so much fun to play with!! It’s non-stop action, moving from one activity to the next and making a beautiful mess. She loves to play catch and has quite a good wind-up and throw. It’s especially cute when she’s playing by herself, throw the balls a few feet, and pirate crawls after it. Hannah also loves books and will give you one after another and “help” you turn the pages. The current favorite is “Touch and Feel Tractors” and she knows exactly what part of the tractor to touch on each page.

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If you follow us on Instagram you’ve seen Ernie make an appearance in a few pictures. He travels with us most days and is a surefire way to keep Hannah happy in a shopping cart. This is the first thing she’s shown a real attachment to. No blanket, lovie, or stuffed animal has received a shred of the attention that Ernie gets.

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Medical – Hannah hasn’t been in a doctor’s office since her 18 month checkup! There have been a few weeks of a horribly runny nose and a gross morning cough but otherwise Banana has been very healthy. The only recent appointment was her first visit to the dentist and I can’t believe how well she did. We do have a cardiology appointment in a few weeks so please keep your fingers crossed.

 

One Year in Daycare

It’s been one year (and a couple weeks) since Hannah has been in daycare and I can say, wholeheartedly, there are no regrets about her being there full-time. The staff loves her and treats her so well, they know when she’s “off” and having a bad day, and they help us work on and reach our Birth to Three goals. The icing on the cake is that the location is incredibly convenient for me, Pete, and Grandma.

A few weeks ago the daycare director called me into her office to discuss whether Hannah should be moved to the next room with the kids her age or kept in her current room with the kids at the same skill level. The director led the discussion with all the disadvantages of Hannah moving to the next room and I walked away from the conversation leaning towards holding her back.

After talking it through with Pete, family, a few friends, and Hannah’s therapist, the “tribe” agreed that Hannah needs to stay with kids her own age. I took all of the ideas and suggestions and had another meeting with the director, and honestly, I was prepared for an argument. Thankfully, she gladly accepted our decision that Hannah should move to the next room. It won’t be until the end of the month when a space opens up, which works out perfectly. Instead of transitioning for a week like the kids usually do, Hannah will have the month to work on a few big girl skills and become acquainted with the toddler room.

Hannah will need to learn to sleep on a cot and give up her pacifier for the big move. We are also trying to get her to use the sippy cup more so that she can give up the afternoon bottle. The facility provides snacks in that room and we’ll need to advise what we feel comfortable giving to Hannah (for example, pretzels are challenging when you only have 5 teeth). Clearly none of these issues are insurmountable or valid reasons to hold Hannah back and the move puts her on the same educational track as the other kids her age.

Immediately after speaking with the director about the big move Hannah was blatantly pushed over by one of the other kids who will also be leaving the room soon. The teachers have all ensured me that Hannah can “hold her own” and developed a death grip to prevent toy theft but I still worry that she’s going to be an easy target and get picked on.

 

Hannah’s Ear Tube Surgery

It’s been a little over two weeks since Hannah’s ear tube surgery and I feel pretty bad for not writing about it yet.

We knew from the sedated echo that Hannah would handle the “nothing after midnight” fast pretty well. I gave her a late bottle the night before and she had no problem skipping her morning one. We were told to check in by 7:10 but arrived about fifteen minutes early and re-lived the morning of her heart surgery. We went up to the same suite to check in, answered the same questions, signed the same forms, and were escorted to the same pre-op area.

At this point I was trying not to let my nerves get to me but it’s so damn hard when you’re waiting for nearly two hours and are asked the same questions by a dozen different people. Of course everyone there is extra nice but the rotation of nurses, residents, and doctors was tiresome and created a long build-up to the main event. Finally we talked to the anesthesiologist, who said she saw Hannah’s latest cardiology report and didn’t expect there to be any heart related issues while Hannah was out. We were given a mask for Hannah to play with so she’d be more comfortable with it. I understand they meant well but thirty minutes of make believe with a gas mask doesn’t do much for an 18 month old.

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Once everyone was ready for us the next step happened in a blink of an eye. I put on a paper robe and gloves, carried her into the operating, and plopped her on the bed. We were swarmed by people, hands all over Hannah, then the gas mask held to her head. I wish someone would have warned me that I would be watching someone suffocate my child. There was a nurse standing behind me explaining that the eye rolling was “normal,” the desperately trying to pull away was “normal,” and the stranger holding the mask tighter was “normal.” I was escorted from the OR before Hannah’s eyes close but was assured she was asleep. That moment was only slightly less terrifying then when Hannah woke up after her OHS and was still intubated.

The nurse walked Pete and I to the waiting room, where we snacked on free graham crackers and texted the grandparents. Just as I was making a cup of coffee the ENT came out and brought us to one of the little rooms across the hall to update us on the surgery. It was quite a production for good news. Pete and I are fairly certain we were given updates on Hannah during her OHS in the middle of the full waiting room. Anyway, they were able to get the tubes in her teensy ears and suck out the fluid. Audiology was already conducting the hearing test and the anesthesia was weaned back just enough to keep Hannah in a deep sleep.

An hour or so later the audiologist came out, brought us to the same meeting room, and said Hannah’s test was very good but still missing the lowest sound on one side. The results were much better than her last behavioral hearing test, very slightly worse than her last BAER test, but still nothing to be concerned about.

We were finally reunited with a very sad little girl who had to be bounced or patted to stay calm. Once she started to wake up we offered her a bottle of watered down apple juice and were astonished that she chugged a few ounces. Thank goodness because the sleeping gas gave her the foulest breath and the juice helped wash it away. I was surprised how quickly we were discharged but it was clearly a sign that Hannah was recovering well. Pete and I celebrated with lunch at Qdoba while Hannah continued napping. Her recovery at home was similar to that of the sedated echo – small meals, a long nap, and a very late bedtime.

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I haven’t noticed much of a difference in her hearing. She still hates the rare occasions that Gamy barks and cried when I used the hand vacuum. We always knew she could hear soft or distance noises but the issue was more about how muffled the sounds were. Hopefully the world sounds clear to her now…except for my awful singing voice.

Big News about Hannah’s Heart

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.

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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.

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Hannah’s 1 Year Post-Op Cardiology Appointment

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.

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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.

 

A Belated Heart Day Post

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.

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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.

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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!

Memorial Weekend with Hannah Banana

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.

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It’s amazing what heart surgery and 365 days can do for a girl.

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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.

 

15 Month Appointments

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…

Hannah’s Heart Defect

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.

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Six days before surgery

My Second Mother’s Day

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.