Sunday afternoon I was hoping nap time would consist of Hannah and I snuggling until we both fell asleep. Instead she climbed on my stomach, covered my face with a blanket, and tried to dive over the arm of the chair to grab my phone off the floor. She was obviously caught in the act but smiled, giggled, and signed Ernie. Her cries and protests didn’t last too long and she finally took her last nap as a one year old.
I spent the rest of the afternoon slowly cleaning up from Hannah’s Princess birthday party. I sorted the clothes she was gifted by size and season and was shocked by how a pair of hot pink leggings could look so small and so big. I can’t believe she’s already two. Every day Hannah impresses me with her intelligence, sense of humor, and beauty. She’s stubborn and determined. She’s intentionally funny and can go from silly to serious in the blink of an eye. She has big opinions on clothing and food. Her little cartoon voice makes me swoon. I never, in my wildest dreams, could have imagined how incredible this girl would be.
When I was younger, my friends and I used to shout “make a wish” when the clock hit 11:11. I never knew or cared what it meant but I recently read a book that explained the repetition of the number 1 has to do with angels, miracles, and new beginnings. I immediately thought of Hannah. She’s all three wrapped up in one little being. It’s no surprise that she was born at 11:10 – the Universe couldn’t wait to give her to us.
There was a time after Hannah was born that I thought we wouldn’t have the typical experiences with her. My dreams of moms’ groups, play dates, and story time at the library vanished. I thought we wouldn’t be welcomed. I thought we wouldn’t be wanted. I thought people would stare and whisper and judge. I thought we wouldn’t get to be an ordinary family and I was too embarrassed to try to be “normal.”
In most ways I was wrong…
Not only are we welcomed and wanted, we are loved beyond belief.
Plenty of people stare…how could you resist staring at this face?
The only whispers I pay attention to are those saying “oh my goodness how cute.”
Pete and I are ordinary parents but we have an extraordinary child.
There’s nothing embarrassing about not being “normal.”
A few months ago I came across Whippersnappers Play Gym in a town about thirty minutes from us. I saw a Saturday morning class for kids ages 1-3 on their website and immediately called to sign Hannah up. I was fully aware that Hannah would be at a different skill level then her peers but it didn’t phase me one bit. All those fears from a year and a half ago were gone. In that moment, all that mattered was that our little girl had the opportunity to have fun.
The first week went better than I expected. Hannah investigated each activity cautiously but made sure I was within arm’s reach the whole time. She played well with the other kids by sharing foam blocks. She practiced going down the slide and spent a few terrifying minutes in the swing. Hannah used her sign language to communicate with me, smiled almost the whole time, and didn’t cry or whine at all. The other parents and children were incredibly friendly and I couldn’t wait for us to go back.
Pete joined us for the second class and it made the experience so much better. Hannah hit the ground “running” and crawled around to different toys, willingly went through tunnels, and LOVED the slide. She even enjoyed herself on the swing! We thought she’d enjoy the ball pit but it seemed to be too much chaos for our little Banana. We even tried again without any other kids but Hannah was unimpressed.
Week after week Hannah continues to impress us, whether she’s cutting the line for the tunnel, refusing to part with a ball when another kid tries to steal it, or destroying every block tower that Pete builds. She loves the swing now and cries when her turn is over. There are some activities that require a set of grown up hands or that Hannah’s not quite ready for but our kid has just as much fun as all the others.
We’ve missed the last couple of classes and a birthday party due to pink eye and then a weather related closure. I don’t know if Hannah misses Whippersnappers but Pete and I sure do. It’s so fun to watch Hannah and the other kids play, learn, and grow.
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.
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.
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.
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.
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.
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.
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.
First Day of Daycare
One Year Later
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.
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.
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.
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.
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.
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…
I’ve taken some time away from the blog to just enjoy life with Hannah. And let me tell you, life has been great. Life is steady. We have a routine. Dare I say it’s been easy? Here’s a little update on what Hannah’s been doing…
Eating – As of this week Hannah’s bottles have been a mix of 2 oz of whole milk and 4-5 oz formula. She’s tolerating it well so next week I’ll slowly increase the whole milk. She’s eating 4 containers (4 oz each) of baby food and self-feeding puffs and baby cookies. Hannah’s made big improvements with real food. No more gagging! So far she’s happily eaten toast with jelly, french fries, rice, chicken, baked ziti, pancakes, home fries, and a taco meat/cheese/sour cream mixture on Taco Tuesday at daycare. We still need to work on chewing because she tends to let the food sit in her mouth until it softens but keeps asking for more and more.
Birth to Three – Hannah’s annual evaluation was on Wednesday and it went pretty well. Her score was a little low in the “Self Help” category because she still refuses to hold her own bottle or cup. There were also a few skills that Maureen needed to see Hannah do and Hannah flat out refused. For example, I put some puffs on my hand so Hannah could feed herself but Hannah wasn’t interested so she slapped my hand to make the puffs fall. Hannah’s still struggling with holding the crawl position without assistance but at least she doesn’t hate being on her hands and knees anymore. We’re also getting some OT help starting in May to help Hannah learn to chew.
Daycare – Hannah is officially in the back room with the mobile kids and I couldn’t be happier. She’s included in all the crafts, like finger painting and coloring, and sits in the mini highchairs with the other kids during snack time. There’s a big mirror that Hannah loves to play in front of (and once got so excited that she leaned forward and bumped her forehead on one of the mounting screws). Hopefully watching the other kids move around freely will motivate Hannah to get that little tush off the floor.
Sleep – Still the best sleeper ever but bedtime has been later and later lately. Hannah typically takes a nap at daycare from 4pm until 5ish which has pushed bedtime back from 7 to 7:30. The daycare staff asked if they could try one nap instead of two because Hannah’s not showing interest in the morning one. That’ll be interesting on the weekends when Hannah tries to avoid naps all together.
Playtime – Hannah’s playtime could be a reality show. She’s so stinkin’ funny! The singing, the laughing, the throwing of toys followed by a desperate reach to get them back. Our evenings are amazing. Watching Hannah figure out how to play with a new toy has brought me so much joy. Even though she’s content playing my herself I love when she looks up at me and smiles, waiting for me to reciprocate, or reaches out for my hand to get me to play too.
Medical – Hannah hasn’t seen a doctor since the sick visit for the stomach bug. We’ll make up for the break next month with cardiology, ENT, audiology, and a 15 month pediatrician checkup all within two weeks.
Last Sunday, in the very early morning, Pete woke up to the sound of Hannah coughing…and vomiting. We cleaned her up, changed her clothes and the crib sheet, and put her back to bed, all for her to have round two an hour later. She slept soundly the next few hours and woke up wicked hungry around 4:30 so I fed her a small bottle of formula. Instant throw up. Another wardrobe change and Hannah fell asleep. When she woke up hungry at 7, I mistakenly tried formula again with the same results.
The rest of Sunday was spent trying to entice Hannah to drink Pedialyte and checking to see if she had a wet diaper. The pediatrician’s office was incredibly unhelpful, telling me that Hannah would surely have a wet diaper when she woke up from her nap. Well, after nine hours without a wet diaper we called Grandma’s friend who’s a rock star nurse and she suggested taking Hannah to the children’s hospital. Apparently Hannah just needed a little motivation because as I took her upstairs to pack a bag she gave us the wet diaper we were waiting for.
Unfortunately we repeated the waiting game again in the afternoon/evening but another call to the pediatrician’s office had better results. The NP said we could try any liquid at that point, even formula since Hannah hadn’t been sick since the morning. When I mentioned that Hannah was going more than eight hours without wet diapers the NP said that timeframe is a guideline but we should follow our gut and take Hannah to the hospital if/when we were uncomfortable with the situation. I gave the formula another shot and Hannah kept 2 oz down at 8 pm and another 2 oz at 11 pm. At that point I felt better that Hannah had some fluid in her and decided to see how she was in the morning before making a trip to the hospital.
The next morning, thinking Hannah’s belly was back to normal, I gave her a small bottle, which she chugged and threw back up. Thankfully Grandma was able to watch Hannah and meet me at the pediatrician to check Hannah for signs of dehydration. The doctor said Hannah looked fine – her mouth was wet, lips weren’t dry or cracking, and her capillary refill time was good. This doctor said a wet diaper every twelve hours is acceptable and warned us that the stomach bug they’ve seen starts with vomiting and ends with diarrhea. He suggested offering Hannah white grape juice or watered-down Gatorade since she absolutely hates Pedialyte, and then binding foods like applesauce and bananas once her appetite was back.
Even though she hadn’t been sick since Monday morning Hannah stayed home with Grandma on Tuesday too because she still wasn’t eating or drinking much. She was back on formula, starting to eat more food, and back to being a happy girl. When I got her home Tuesday evening I thought we were finally back on our normal schedule…and then the diarrhea started.
Hannah had to skip daycare again on Wednesday and we lost our backup childcare because Grandma caught the stomach bug from Hannah. I called out of work to stay home with the poop princess, which wasn’t too bad because it gave me a chance to fold all the laundry produced over the last few days. Hannah seemed to be feeling alright until she would eat or have a bottle. Thankfully I learned the schedule quickly and was able to minimize the number of dirty pants.
That smile = up to no good
By Thursday morning Hannah was 100%. She was eating and drinking her normal amounts and the vomiting and diarrhea stopped. Grandma was feeling better and said she could watch Hannah (since she should be out of daycare 24 hours after the bug stopped). It was a good thing Grandma was free because Pete and I were both sick with the same bug. I tried so hard all week to contain the messes and wash my hands but there was no escaping it. At least we learned that Hannah knows how to share and we’re all healthy for the Easter family gatherings today.
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