Hannah’s Heart Defect

On May 15, 2016 By LeeIn heartLeave a comment

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.

My Second Mother’s Day

On May 9, 2016May 9, 2016 By LeeIn Uncategorized2 Comments

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.

Life with Hannah Banana Lately

On April 15, 2016 By LeeIn Hannah1 Comment

Oh, hello there! Remember me?

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.

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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.

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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.

Hannah’s First Stomach Bug

On March 27, 2016 By LeeIn HannahLeave a comment

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.

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.

Important Milestones You Won’t Find in Baby Books

On March 18, 2016 By LeeIn HannahLeave a comment

Baby milestones are a big deal, regardless of how many boxes you check off on a medical history form at the doctor’s office. They’re a big deal because your child is learning, growing, and transitioning from a dependent baby to an independent toddler. In our house, this transition will take extra time. The learning and growing happens over weeks or months only to reach one stepping stone of a milestone.

It’s almost impossible not to focus on Hannah’s progress when I can’t go a week without someone asking me if she’s crawling, walking, dancing, or talking yet. I’ve finally perfected my response, which was previously a gaping mouth and deer-in-headlights stare. Now I simply say “No, not yet” and when the other person gives a concern look I follow up with “Hannah’s on her own schedule.” Anyone who knows Hannah understands my response and for everyone else, well…I don’t owe them an explanation.

Typically, I try to stay away from any social media links or stories about milestone schedules; however, I came across one the other morning that piqued my interest. The picture on Pinterest showed the words “Important Milestones You Won’t Find in Baby Books” written across a diapered bum. The list included a few moments we have experienced and a few I hope we can avoid.

The first time you get pooped on – Hannah pooped on me while we were cuddling post-birth. I can’t wait to tell her that when she’s older and being sassy.

The first time you cry when your baby cries – Not yet, surprisingly.

The first day all the other moms seem to know what they are doing – The first day? How about every time I go out in public, sporting yoga pants and dirty hair, struggling to balance the carseat, diaper bag, and whatever else I was silly enough to bring. Then I look up and see another mom dressed like a functioning member of society with 4 well-behaved kids in tow, buying craft supplies to do some crazy Pinterest project. Yeah..I’m not the least bit jealous.

The first tantrum – Let’s call this a meltdown instead. It was 3 weeks after Hannah’s surgery and we were at our friends’ house. Out of nowhere Hannah started screaming and crying. She didn’t want the bottle or pacifier. She didn’t want to be held or laying down. She didn’t want gas drops of Tylenol. She and I were sweaty, exhausted messes when Pete and I finally decided to leave, which was exactly when Hannah stopped crying.

The first time the baby throws an entire plate of food – The pediatrician recommended letting Hannah play with her food or hold a spoon to see if she can find her mouth. Well, let me warn you that a spoonful of applesauce travels farther than you’d expect when thrown by a 1 year old.

The first time she figures out how to remove the diaper – Thank goodness we aren’t at this stage yet! Our wiggly little girl is starting to learn how to evade a clean diaper by rolling over.

The first night you literally get no sleep – I can’t even blame a restless baby for this since Hannah slept through the night at an early age. The week before I went back to work was plagued with anxiety dreams and very little sleep.

The first day you realize you’re amazing – The first day, a good week after she was born, that Hannah and I were home all by ourselves and we both survived.

And I’m adding this one to the list…

The first time your heart explodes with love – The first time Hannah saw me and reached out for me.

Hannah’s First GI Consult

On March 11, 2016March 11, 2016 By LeeIn HannahLeave a comment

This morning Hannah finally had a GI consult because she’s still spitting up bloody stuff occasionally. The pediatrician was under the impression that the issue stopped back in October/November when we stopped using the nasal aspirator but I told her during Hannah’s 12 month checkup that it was still happening every few weeks. She suggested keeping track of it and we could revisit the topic at the 15 month appointment. Then last week when Hannah was sick she threw up one night and it ended with some of the bloody mucous. Finally, the pediatrician said she’d submit a referral for a GI consult!

First we met with a nurse practitioner and discussed the history of the spit up, Hannah’s eating habits, and her persistent constipation. The NP didn’t seem too concerned by the spit up but honed in on Hannah’s weight gain plateau and disinterest in thicker food. I tried to explain to her that Hannah hated baby food at first and loves it now, and that it doesn’t seem like she has texture issues but more like she doesn’t know she has to chew the food first.

The NP suggested prune or pear juice to help Hannah move things along. She didn’t give me a straight answer when I asked how much because she doesn’t want Hannah’s liquid needs to be filled by sugary juice. The other option she mentioned was a prescription for lactulose, a synthetic sugar that’s absorbed directly by the large intestines. We’ll try the prune/pear route first and see how Hannah does.

When the doctor arrived the NP gave him a run down of our discussion and asked for his input. He said the spit up is not a GI issue at all because the consistency is mucous-like, which means it’s an ENT issue (who told me it was a GI issue). His opinion was that it’s a broken blood vessel in the nasal passages and shouldn’t worry us too much since it’s happening so infrequently. He also didn’t seem concerned by Hannah’s slow weight gain or food apprehension. He proposed a visit with the nutritionist (who I strongly dislike back from Hannah’s pre-surgery days) but I’d prefer to give Hannah the original 6 weeks the pediatrician suggested to catch up.

Overall the appointment wasn’t worthwhile. It seems to be the running theme with Hannah’s specialist visits lately (inconclusive hearing test, and “come back in three months” ENT visit). I did enjoy the extra snuggle time with my little love bug, who was fighting a new cold and a low fever.

Doctor, doctor give me the news

On February 26, 2016 By LeeIn HannahLeave a comment

Hannah’s birthday was sandwiched between three doctors appointments.

Friday afternoon she had her first non-BAER hearing test, which ended up being a total bust. There was someone sitting in the room with us to monitor Hannah’s facial reactions to the sounds but Hannah was more interested in that woman than she was to any of the noises. After the test, the audiologist confirmed that there’s still fluid in both of Hannah’s ear. Once again she referred us to the ENT and said the end result will be tubes if the fluid doesn’t clear up. We also had to make a quick stop at the lab for blood tests. The phlebotomist surprised me by finding a vein quickly and not making Hannah cry to hard, then he was in such a rush to get us out of the room that he left the rubber tourniquet tucked into Hannah’s sleeve and almost forgot to tape the gauze on her arm.

Monday night after work Hannah had her big 12 month pediatrician checkup. I made sure to take lots of notes because I knew I wouldn’t remember everything. Here are some of the highlights:

Length 28 3/4”

Weight 18 lb 6 oz

Head circumference 17 1/2”

The main topic was Hannah’s eating and weight gain plateau. I take full responsibility for the delay in getting Hannah to eat thicker foods because it was too scary watching her gag over a puff or piece of mushy bread. Our pediatrician wants to transition Hannah to 3 meals and 2 snacks a day and have her off formula and bottles by 15 months. We’ll start giving her whole milk in a sippy cup and try foods like pastina, eggs, and fruits/veggies steamed at home. The Dr. even suggested mixing olive oil and butter into the food to increase her calorie intake.

The fun part of the focus on eating will be getting Hannah to feed herself. Since she’s completely against holding her own bottle I thought it would be hard to get her interested in holding the spoon. Turns out she loves to feed herself…then throw the spoon on the floor and cheer for herself. We’re also supposed to put food on the highchair tray and let Hannah play with it, with the goal of some of it ending up in her mouth.

Tuesday morning was another follow up with the ENT. Hannah’s ear infection cleared up but could possibly be the reason for the fluid in her ears. Thankfully she said we can give Hannah through the Spring to see if the fluid disappears before making the decision for tubes.

Hannah’s Birthday Party Recap

On February 24, 2016 By LeeIn Hannah1 Comment

Hannah’s party was one of the most fun days of my life. Our house was full of friends and family who have supported us over the last year and given Hannah endless, unconditional love. The “Winter Wonderland” theme felt out of place with 50* temperatures outside but the decorations reminded me of the freezing temps on the day Hannah was born.

The birthday girl took a long nap in the morning and woke up right before the party started in a great mood. Hannah didn’t mind the silly hat I bought for her, being passed around between guests, or the hours of attention. I was expecting her to cry out of shock when everyone sang “Happy Birthday” but she actually seemed to like it. There wasn’t any cake smashing because Hannah was wary of the little confection – she wasn’t interested in the cake part and got an immediate sugar rush from the frosting. It was her first taste of real food, besides French bread and pizza crust, so I’m sure her taste buds were overloaded.

Hannah was completely spoiled with gifts from everyone. We might need to turn the spare bedroom/office into a toy store for the kid. She also received some of the cutest clothes. I thought baby clothes were adorable but 1 year clothes might take the top spot.

The party started to wind down and most of the guests headed home. Unfortunately my parents head to head back to New Jersey because my dad had an early flight the next morning but a group of friends and Pete’s family stayed for an impromptu after party. Drinks were flowing, leftover lunch became dinner, and I was filled with pure joy. Pete said the day reminded him of our wedding – great food, our favorite people, and a touch of sadness when it was over.

A huge thank you to my sister-in-law, Sara, for taking pictures during the party!

Hannah’s All Grown Up

On February 19, 2016February 19, 2016 By LeeIn Hannah1 Comment

Hannah’s on the verge of turning the big o-n-e and every day she looks more and more like a little girl. It’s like she totally skipped the toddler scene and went straight to being an opinionated 6 year old. The other night I was stroking her head, putting her crazy bangs back in place and she pushed my hand away. When I tried to bring it back up to her forehead she grabbed my hand, pushed it to my leg, and held it there. She was exasperated and I was clearly embarrassing her in front of her stuffed animals.

Last weekend, her final weekend as a baby, was full of big girl activities. It started with her very first professional haircut and style. Hannah sat on my lap during my whole appointment and was treated to a quick trim and pigtails by my friend Ali. I see years worth of Mommy/Daughter salon dates in our future and was thrilled that Hannah was patient and content even though her lunch time was quickly approaching. I’m sure it helped that she got plenty of attention from Ali and the other women there.

The next day, sporting her new ‘do, Hannah went to the mall with her friends. That’s right, Hannah cruised the mall without parental chaperones. A few of Hannah’s daycare teachers had been expressing interest in taking Hannah to the mall and we finally arranged something for Sunday. I didn’t expect to want to cry when I handed Hannah over and said goodbye. Alyssa and Makayla watch Hannah 40 hours a week but I still felt the need to ask them not to drop our baby or let her get kidnapped. Thankfully Pete and I received some pictures from the girls which we immediately shared with the grandparents. It was a big step for me and Pete because it was the first time Hannah’s been without a family member out in the real world.

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It’s been a crazy year and tomorrow we finally get to celebrate this little one who’s growing up way too fast.

Our Baby is Almost 1

On February 13, 2016 By LeeIn Hannah, Uncategorized1 Comment

I’ve been thinking a lot lately thanks to Hannah’s rapidly approaching first birthday and the thinking is stirring up those crazy emotions from last year. It’s all stuff that I don’t want to talk about because when I talk about it I cry and I don’t want to shed any more tears for 2015.

This time last year we had no idea what was coming. While we were busy folding tiny clothes and anticipating more snow, Hannah was resting up to make her debut and change our lives forever. Some days it feels like the year flew by. I grasp on to the details of those first weeks with Hannah, trying to hold on to them like a kite being sucked into a tornado. I try to remember the faces she’d make when nursing, the warmth of her tiny hand on my chest when she napped in my arms, and the adorable sigh she’d make after sneezing. Other days the details are remarkably clear. I can still hear Hannah’s cries when we drove her home from the hospital and the sound of her heavy breathing during tummy time. I can see the look in her eyes the first time she made real eye contact with me.

I’ve been thinking about the day, shortly after the miscarriage, that I sat in my car sobbing and praying. I begged God for a healthy baby and in exchange I would gladly suffer through a miserable pregnancy. I would have gone through Hell for another chance to be a mom. I’ve been thinking about when people asked me if we wanted a boy or girl I’d say “It doesn’t matter as long as he or she is healthy.” Now I cringe at the term “healthy baby,” I know that real Hell is watching your child suffer, and I know better than to barter with God.

I’ve been thinking about Hannah’s perfect, beautiful birth. How “trying to push” turned into real pushing and twenty minutes later I had our daughter on my chest. And twenty minutes after that our world was shaken. I wish I could go back to that day with the knowledge and peace that I have now. I wish I could go back and enjoy every second, give my whole self to Hannah, instead of being scared. I wish I could relive those moments of doubt without wondering if she was or wasn’t doing something because of Down syndrome.

A year ago I never thought we’d end up here. I never thought having a child would change our lives quite like this. Hannah’s extra chromosome has added more to our lives. More doctors and appointments. More uncertainty and unfamiliarity. More awareness and compassion. More amazement and beauty. Hannah introduced us to a whole new life, a new community, and taught our family more than we ever anticipated learning in a year.

Hannah made me a mother that I did not expect to be. She made me tougher, yet more empathetic. She showed me that we can do hard things. I wish she knew what a strong girl she is and how amazing her little body is. I wish she knew how proud we are of her. I wish Hannah knew how extraordinary she is.