6 Month Check Up with Hannah Banana

On October 1, 2015October 1, 2015 By LeeIn HannahLeave a comment

Tuesday afternoon the daycare called to let me know that Hannah’s cold was getting worse. She was fussy in the morning, wouldn’t tolerate lying flat, was having trouble with her bottles, and belly breathing. The director said it wasn’t an emergency, they just wanted to let me know. I called the pediatrician’s nurse line and left a message asking if Hannah needed to be seen. Like me, the nurse was concerned by the belly breathing and made us an appointment for 4:15.

I spent the next 2 hours doubting myself. Had I let the cold go too long without medical intervention? Did I miss a sign of something more serious? Was I wrong to shrug it off as a typical daycare kid’s cold? I know I only met her 6 ½ months ago but I think I know Hanah pretty well and she seemed OK to me. I was preparing myself to spend the night in the hospital with her connected to IVs and oxygen. Then Grandma texted – Hannah was fine. Seriously, have you ever seen a kid so miserable in your life?

We kept the appointment to make sure there weren’t any issues. Lungs and ears clear. Oxygen levels at 100%. Can’t get much better than that! I asked a few questions about how to ease the cold symptoms and what would warrant an impromptu visit next time. She assured me that when post-surgery Hannah gets a cold it’s just like any other kid’s cold…except that Hannah’s nasal passages are smaller so she will sound worse, be sicker longer, and has a higher risk for ear infections than the typical kid. And that’s where I struggle. In certain aspects of her life, Hannah will be typical with an asterisk.

Yesterday afternoon we had Hannah’s late 6 month check up. Her weight is up to 6 lbs 14 oz and her length is somewhere between 26 and 27 inches (their measurements are not very accurate). I gave Banana a bottle while I asked the doctor questions about baby food, Hannah sleeping on her belly, and the flat spot on her head. Hannah fell asleep in my lap and managed to stay asleep for part of her exam. Homegirl must have been tired if she was able to ignore a cold stethoscope.

After the exam we talked about the questionnaire I completed in the waiting room. At the 4 month appointment, most of the questions were answered with ‘sometimes’ and ‘no’. This time around most of the answers were ‘yes’. Hannah has developed quite a few new skills in the last two months and I’ve even noticed a big change in her over the last two weeks. She’s so much more observant and wants to touch everything. I sat in the backseat with her coming home from the Buddy Walk and watched her look out the window, get surprised by the changing shadows and light on the backseat, and reach out for anything I dangled in her sight.

Once we got home we had about 45 minutes before our Birth to Three appointment so Hannah finished her bottle and took another nap. Maureen and I completed the Hawaii Early Learning Profile, which is pretty simple when evaluating a 7 month old. Hannah woke up fussy and in no mood to socialize or exercise. Instead of making her work, Maureen taught me some facial massages to do before feeding to help stimulate her muscles and I asked for tips on teaching her sign language. When the visit ended Hannah took a long bath, had a small bottle, and it was a very easy bedtime.

Today could possibly be a rough day for the little one and the daycare teachers. She’s still a little stuffy and might be cranky from the vaccines she received yesterday. Fingers crossed for a happy day!

The Aftermath of Hannah’s Diagnosis

On September 14, 2015October 8, 2017 By LeeIn Down Syndrome, Hannah2 Comments

This post is essentially what prompted the idea of the blog. Every word existed in my mind for months but it took weeks to actually write them all out. Then it took another week to work up the courage to sit here, ready to give the world a piece of my heart. There were a lot of tears and a lot of chocolate was consumed in the making of this post.

My heart was broken when we received Hannah’s Down syndrome diagnosis. It was as if the labor contractions I had experienced just 30 minutes earlier migrated to my heart with the sole goal of demolishing it. The emotional shock was so overpowering that it made my body ache. I was physically present but my mind was disconnected from reality, like it was all a dream. It’s a sensation I hope to never experience again.

Hannah was kept in the nursery for testing, then transferred to a children’s hospital in the evening. It was about 36 hours before I saw her again, the strangest and most depressing 36 hours of my life. My soul hurt and my heart was empty, crushed. Every positive emotion connected to bringing a child into the world was cancelled out by an equally powerful negative emotion. The strongest of all was fear. I was afraid no one would love Hannah. I was afraid I wouldn’t love Hannah.

lee 391 — Hannah’s ride to the children’s hospital

I practically ran through the hospital’s parking deck the morning we went to see her. My stomach was sick from a mixture of nerves and adrenaline. I needed to see my baby. I needed to fill that emptiness. I needed her to put my heart back together. One look at her chubby face and she had me. One look and I knew I’d love her unconditionally until the end of time.

My love for Hannah didn’t change the fact that I felt cheated and the grief of losing the daughter I was expecting hit me hard. Even though I now know the grieving period is normal and expected, there are days that I’m ashamed of my weakness and embarrassed by my ignorance.

An innocent Google search to learn about my daughter overwhelmed me with an endless supply of statistics and probabilities that did nothing but encourage more anxiety and uneasiness. Family members writing in Down syndrome forums said the children in their lives were miracles and blessings. I thought these people were insane. How could a child with physical and cognitive delays be a blessing? You were blessed with a life of exclusion, stares from strangers, a child that can’t and won’t be able to do the simplest things? I was sure these people were lying to themselves. Hannah’s wasn’t a special baby – she was a Special baby. She had a defective heart. She was broken.

I blamed everyone for Hannah’s extra chromosome. I told myself we should have waited longer after our miscarriage, that my body clearly hadn’t understood the science of multiplying cells. I blamed the doctors for never noticing any signs on the ultrasounds. I blamed my obstetrician for assuring me that my genetic test results were good enough. I blamed myself for not trusting my gut and insisting on an amniocentesis. I blamed God. It felt like a punishment, a life sentence of hard labor for two people who were already working hard. I didn’t understand why God would give a child with special needs to a couple that was not financially or emotionally strong enough to handle her.

Daydreaming about the future would spiral out of control. That one chromosome plagued every thought and crushed every dream. Hannah would have friends as a toddler, while she was still cute and her delays were shrugged off as being young. After a few years the cuteness would wear off and our friends would stop inviting us over. It would be too hard for them to have us around. Our only friends would be other families in the Down syndrome community. People would stare at us in public, feeling pity not empathy, for our sad lives. Hannah would struggle in school and spend recess and lunch alone for more than a decade of her life. Afternoons would be spent in therapy and doing physical and mental exercise instead of chasing friends in the backyard, squealing in delight. Hannah would live with us her entire life. There would be no retirement. We wouldn’t get to cash out at 65. We wouldn’t have a child to take care of us in our old age. We would not be grandparents. We would only be Mom and Dad.

One day the grieving stopped. When Hannah was about 3 months old a coworker asked me how she was doing. My response was a single word – perfect. It was true. Hannah always was and always will be the most perfect human being in the world. I was the broken one. I had no experience with the world of special needs prior to Hannah and had no concept of what Down syndrome meant for our future and for Hannah’s life. As I educated myself I became disgustingly aware of my ignorance. I didn’t know we joined a community of beautiful and courageous families. I didn’t know there are advocates whose life work is to spread awareness. I didn’t know to stop seeing Down syndrome as a disability.

I still have bad days and struggle to drown out the ‘what ifs’ and ‘how comes’. I see children younger than Hannah practicing a skill that she’s not ready to attempt. Comparison is an ugly game and we will rarely win. The future still scares me. If I’m not careful my imagination will push me over the edge into a sea of hopelessness. I remind myself that Hannah will run around with friends. She will ride a bicycle. She will be included in school. She will go to college. She will do all these things and many more but she will do them when she’s ready. No one will rush my baby and no one, God help them, will limit her.

When I look at Hannah I don’t see Down syndrome. I see a little girl who wakes up every morning with a smile. I see the determination in her eyes to grab a toy just out of reach. I see a scar that reminds me of how much she struggled during her first few months of life. While I’m not at the point where I can say Down syndrome is a blessing, I know that Hannah is. Every day I am thankful for the time I have with her. I am thankful that her heart defect was repairable. I will get to see her grow up, unlike so many families who have lost children. Hannah was given to us to teach us about true love and compassion, to make us strong, and to spread joy (which she already does so well). I would never take Hannah’s extra chromosome away from her. It is the foundation of her life. Without it there would be no Hannah and I can’t imagine my life without her.

12 Weeks after Surgery

On September 7, 2015September 7, 2015 By LeeIn HannahLeave a comment

This past Friday marked 12 weeks since Hannah’s AV canal repair surgery. It’s amazing how time flies when you’re not looking for signs of heart failure.

The week before the surgery we traveled to Virginia Beach for my sister’s wedding. We had the cardiologist’s approval for the long road trip and the wedding festivities were a welcomed distraction. It was the first time Hannah met my two brothers and most of my extended family. We were there to celebrate the union of two people in love but I was also celebrating the beginning of Hannah’s new life.

The rehearsal dinner was in a private room at a local restaurant. I didn’t know most of the people in the room, only the bridal party and some familiar faces from the bridal shower., but everyone knew of Hannah.

Hannah was a perfect dinner guest. She was quiet and there was an empty corner for her to play on a blanket. She loved to stare at her hands. There was nothing more marvelous than the back of her own hands. I had to interrupt play time to give Hannah her meds. Three times a day we fought with Hannah’s tiny mouth, tricking her into opening it, navigating around her tongue, trying different techniques to get her to swallow the sugary liquid.

I fished through the diaper bag for the two bottles and a syringe. I always started with the easy one, the one that made her smack her lips for more. The second one had an artificial banana flavor that even made me cringe. I wiggled the syringe to the corner of Hannah’s mouth and released a drop or two. Rest and repeat. Rest and repeat. Rest and repeat.

I suddenly became very self-conscious and wondered how many people were watching us. Sitting in a room of normal people with their normal lives I was giving my baby medication to delay heart failure. How did this become my normal? Counting grams of gained weight and milliliters of milk consumed. Listening for labored breathing and checking to make sure she was still breathing. EKGs, echocardiograms, and pulse oximetry. Waiting in exam rooms and waiting for a surgery date. Four long months of normal.

One week after surgery we had a different baby and our normal changed.

Hannah loves to eat and hates to nap. She refuses to snooze the day away when there’s so much playing to do. A few thirty-forty minute power naps are all she needs to feel refreshed and energized. Hannah would spend all day in the activity gym if she could. She rocks and rolls and flips and spins. She whacks and kicks her toys with force and pulls them into her mouth. Anything that goes near her mouth must be tasted. On Saturday while I was changing her diaper, my left hand holding her feet up, she pulled her feet towards her face, guided my forearm to her mouth, and gnawed on it like the world’s cutest zombie baby. When it is time to eat, at prompt three hour intervals, seven ounce bottles are guzzled faster than she used to laboriously drink three ounces. The hearty burps and belches are music to my ears.

Her cries are loud and long-lasting now. Hannah’s first ever baby meltdown only lasted ten minutes because she didn’t have the energy to keep crying. It happened in the early evening and knocked her out until morning. The new Hannah can wail and, of course, the first time she showed us we were hanging out with friends. Forty-five minutes of shushing, bouncing, rocking, rejecting bottles and pacifiers, and sweating (me and her) for no apart reason. Four nights in a row. Poor Gamy was ready to move out. We’re fortunate she doesn’t demonstrate her new skills that often.

Normal is easier now and much more fun. A heck of a lot chubbier too.

A Weekend with Hannah Banana

On August 31, 2015August 31, 2015 By LeeIn Life StuffLeave a comment

As I got ready for bed last night I looked around the room at the remnants of the weekend (a basket full of unfolded laundry, a new pile of clothes to wash) and thought about the mess in the kitchen (a stack of mail and paperwork, a bundled up sunshade blocking the back door, dirty dishes in the sink). I wasn’t as productive as usual and the house is a hot mess. I’ll have to catch up on cleaning this week, which is already going to be extra busy and emotionally draining. The mess reminds me that it was one of the best weekends I’ve had in months.

The reason it was such a good weekend was because I gave up on my “to do” list. I let myself enjoy the amazing weather with my family and not worry about the mundane tasks at home. When my coworkers ask me what I did this weekend my answer won’t be “Oh you know, the usual.” This time I have stories to tell and pictures to show!

I’ll tell them how Pete had to go into work Saturday morning and I tore Hannah’s closest apart searching for the 6-9 month clothes. She played under her activity gym while I packed away her tiny clothes and stared at 18-24 month sizes in disbelief that they will fit her one day. I thought about all the baby things she no longer does and wondered what 2 year old Hannah will do. We also survived our first diaper blowout and thanked our lucky stars that it happened at home (and that the brand new white onesie, white crib sheet, and white mattress pad show no signs of doody destruction).

I’ll tell them about the walk we took along the Farmington River. That Hannah slept the whole time and that my arm is sore from Gamy pulling me from one scent to the next. After the walk we drove over to our favorite deli for a late lunch. It was close to feeding time for Hannah but we risked a meltdown in favor of dining outside. Hannah and Gamy were both perfect lunch dates, as usual.

I’ll tell them how I slept through my alarm clock on Sunday and didn’t wake up until 6 am. Somehow Hannah was on board with the late start and only mildly irritated with the delayed breakfast. Pete went fishing and I dropped the kids off at Grandma and Grandpa’s house after Hannah’s morning nap. I had some errands to run and grocery shopping to do and knew I’d be more efficient without my adorable sidekick. I hate not spending time with Hannah on the weekends but sometimes this momma needs her personal time. I drove with the windows down and music up thanks to Pandora playing my favorite songs.

I’ll tell them how the pre-Labor Day sales were too enticing to pass up and that I left Old Navy and Kohl’s with bags full of new clothes for Hannah. While the stores are filling their shelves with scarves, candy corn, and all the things pumpkin spice, Hannah and I put on our bathing suits for the first time all year. I finally bought a plastic kiddie pool to play in but Hannah was unenthusiastic due to her afternoon nap strike. I finally got her to fall asleep on my chest but she immediately woke up when I tried to deposit her into the crib.

I’ll tell them how we went to Grandma and Grandpa’s for dinner and that Hannah still refused to fall asleep. She must know she’s the life of the party and refuses to miss any excitement. We ate and chatted and left in time to watch Bachelor in Paradise and Hannah finally fell asleep.

I’ll tell them how I wish chores didn’t exist so I could always have weekends like that.

Early Intervention at 6 months

On August 27, 2015 By LeeIn Down SyndromeLeave a comment

We knew from Day 1 that Hannah was a “floppy” baby, which would result in physical developmental delays. I didn’t really understand what the doctors meant until Hannah was home from the hospital and constantly cradled in my arms. She was heavy and hard to maneuver. Trying to manipulate her body to find a comfortable nursing position was like trying to move a canvas sack full of wet sand.

I knew I wanted to start tummy time right away. I’d lay Hannah on my chest and she’d lift her head in small, jerking pulls. As she got older I’d lay her on the floor and she’d briefly tolerate the exercise before quickly transitioning into silent protest. She disliked tummy time more and more each day and the pediatrician assured me that it was normal at Hannah’s age because she learned it’s hard work.

An evaluation by a local Birth to Three program done at 8 weeks showed that Hannah was not far behind a typically developing child; however, at such a young age she wasn’t expected to be doing much. As a family, and with the input of the Birth to Three coordination, we agreed to wait until after Hannah’s heart surgery to begin therapy sessions since she needed to save her energy for daily functions of life.

We gave Hannah 6 weeks to recover from surgery, at which point the physical restrictions had been lifted. At a meeting with the coordinator and Hannah’s teacher Maureen, we were asked what our goal was for Hannah. I knew it was a goal that would require time and hard work from Hannah but I said that I’d like for her to be able to sit unassisted. We scheduled weekly visits with Maureen, a Special Education teacher, and a couple visits were scheduled later on with Ann, a Physical Therapist.

Days before therapy started I was dressing Hannah one morning and rolled her onto her side to reach the buttons on the back of her shirt. Hannah was bored with my fumbling and flipped herself right onto her belly and proudly lifted her head up to look at me. I was so astonished and of course I didn’t have my phone near me to document the achievement. It was at this moment that I realized how hard tummy time must have been for Hannah pre-surgery. Not only did she have little energy, but the pressure put on her lungs must have made breathing even more challenging for her. Post-surgery Hannah was ready to work!

Physical therapy with a child is essentially functional play time. Maureen and Ann hold Hannah in different positions to help strengthen the back and neck muscles. They try to lure Hannah to roll from one side over to the other, from back to belly, and from belly to back. Our program splits the visits between home and daycare so that all of the caregivers are familiar with Hannah’s progress and what exercises to do with her.

Hannah is an amazing student. Even when she’s tired and clearly had enough she does not cry or refuse to participate. She can easily roll to her left side to get to her belly and has no problem raising and gently lowering her head. She no longer sits up like a wet noddle and she finally has some control over that noggin. We are thrilled with the improvement in just 4 weeks!

The added benefit is a great workout makes for an easy bedtime.