Life with Hannah Banana Lately

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.

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.

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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

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.

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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.

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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.

Important Milestones You Won’t Find in Baby Books

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

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

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.

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Hannah’s Birthday Party Recap

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

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.

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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.

 

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

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.

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Hannah’s Second IFSP

Two weeks ago Hannah’s two Birth to Three teachers, Maureen and Anne, came over to write Hannah’s new IFSP. It wasn’t as bad as I was making it in my head (see previous post). I knew they were going to ask us for a new goal for Hannah and the only idea I kept going back to throughout the day was for Hannah to crawl. It’s a goal that’s farther out than the typical 6 month range but I don’t see any reason not to dream big.

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There will be quite a few steps to reach this goal. First, Hannah will need to learn to go from sitting to laying down without toppling to the side, doing a ninja roll, and looking around to see if we noticed. We’ll also need to work on her arm strength, which means more tummy time even though she loves sitting. The hope is that she’ll eventually start to pull her knees to her body while she’s pushing up with her arms. I can’t remember the rest of the steps but I know the team will remind me as we go along.

Aside from the main goal, Maureen listed other developments that we should be working on:

For playtime, we want to see Hannah banging toys together or against something else (the floor, highchair). We know she can grab toys with either hand, as well as move things between her hands, but now we want to see her reach across her body to grab something. This means strategic toy placement and being active participants in her playtime as opposed to solo playtime in an activity gym or bouncer. We should also give her multiple toy options and let her choose the one she wants to play with.

In the social/communication department we want to see Hannah continuing to give us pre-communication signals. For example, if we’re bouncing her and we stop, Hannah will keep bouncing to communicate that she wants it to continue. I think Hannah already does a great job of communicating when she’s done with her bottle (swats it away from her face), wants more baby food (reaches for container and whines), or wants more tickles (grabs your hand and pulls it to her).

I asked about Speech Therapy but Maureen doesn’t think it’s necessary at this time because Hannah is vocal and makes B, D, and M sounds. What we can do to help her speech is have conversations with Hannah so she can learn about back and forth communication and responding. I think most of us do this anyway but we’ll make sure it’s a regular occurrence. We’re going to start basic sign language like “more” and “eat,” which Maureen will discuss with the daycare teachers next week. Hopefully they’ll be on board with it since they see Hannah 40+ hours a week and have the most opportunity to practice with her.

In the two weeks since the meeting we’ve also moved Hannah out of the baby tub. The kid loves it! She’s particularly interested in the drain of all things. Since Banana’s focused on something lower than her I’ve been having a hell of a time trying to wash her hair. I even bought a little visor off of Amazon but it doesn’t make a water tight seal around her head. She doesn’t seem to mind cups of water streaming into her face but she looks a little rough when the bath is over…

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Why I Need to Stop Comparing

Hannah Banana is due for a revised goal setting meeting with Birth to Three. Our last one was for her to be able to sit unassisted, which she has been doing since mid-December. I’m hesitant to rewrite her IFSP (Individual Family Service Plan) because it takes away from a therapy appointment and I don’t want to think about what she’s not doing.

Most days I don’t even think about Hannah’s delays because doing her exercises is a normal part of our routine now. There are some days, though, that it’s so glaringly obvious that she’s behind her peers. Like when someone asks us how old Hannah is and says she must be walking by now…or at least crawling… Or when I made the mistake of asking a daycare dad how old is just-starting-to-walk daughter is. When he said she’s 9 months old I felt a small (ok fine, it was big) twinge of envy.

Besides sitting on her own, Hannah doesn’t seem interested in much other physical progression and her last few PT appointments have been less than stellar because she was either too hungry/tired to participate, struggling with some tummy issues, or full on passed out and snoring like a pig. At last week’s home appointment she was tired and hungry and sucking on her pacifier like it was a hooked up to an all you can drink milk machine. She had no interest in being on her belly and just wanted to sit and stare at her toys.

Maureen took Hannah’s apathy as approval to manipulate her into a few different positions – kneeling, hands & knees, and even some standing. Hannah didn’t seem to mind and at one point Maureen let go of Hannah’s hips while she was on her hands & knees. I expected Hannah to face plant into the floor. Instead she rocked herself like she was practicing crawling. In that moment I reminded myself to stay out of the comparison game. Hannah is clearly stronger than I’ve been giving her credit for lately.

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So what if Hannah can’t crawl or pull herself up yet? That doesn’t make or break her day so I shouldn’t let it bother me. Her social and communications skills are incredibly strong, which is a lot more important for a kid to be happy. Hannah will sure as hell let you know when she’s hungry or tired, or wants more or less attention. She reaches her arms out to me when she wants to be held. She swats her bottle away when she’s full. She reaches for her spoon and whines if I take a break from feeding her. She grabs my hand and pulls it to her body if she wants more tickles. Playtime gets more fun with her each day because she remembers toys or games and anticipates my next move.