Monday, August 27, 2012

By The Numbers

Months since Clara was born: 5
Days she has now been home from the hospital, in a row: 35

Times she tried to kick the blanket off her legs when her mom thought she looked cold: 4 billion
Times she has peed on said blankets: about 10

Number of thymuses she has: 0
Number of times she's been sick: 0 (I'm not counting her sternal infection post-surgery, that was happening, thymus or no thymus)

Weeks without feeding tube: almost 3
Weeks without gaining weight, but not losing any either!: almost 3

Tubeless nights she has slept through: 2 or 3
Nights she has creeped out her parents by staring at her mobile and slowly, mindlessly scratching at her sheets, as if possessed: 2

Times she grabbed Dad's chops and pulled hairs: countless
Number of hairs on her own head: 7ish (maybe she's trying to steal his for implant?)

Number of times I have made her watch the Twilight movies, Keeping Up With the Kardashians and Real Housewives reunion shows: hundreds
Number of times her dad has let her watch Disney and Pixar movies: hundreds
(Clearly, one of us has a better pulse on what is appropriate for babies than the other)

Road trips with mom: 2
Rides on ATV: 2

Trips to the pool: 1
Trips to Costco and the grocery store: 5 (one of these activities is air conditioned, one is not...)

Times I've picked her wee nose: too many to count
Times she has picked mine: 2, this morning in fact

5Ks completed: 1
Pedicures completed: 4
Shoes worn: 0 (she has my short, fat  hobbit feet, I'm afraid and nothing fits yet)

Elf ears: 1
Tiny cute bums: 1
Perfect broken hearts: 1
Super smitten parents: 2

Thursday, August 16, 2012

Out and Proud

About a month ago, Clara and I had gone to dinner with some of my family. It was a super hot day, and the restaurant had a lot of fans on the ceiling, so I opened Clara's carseat cover so she could get a breeze (and commune with her favorite thing on the planet, ceiling fans.) A waitress came by and saw her feeding tube, which led to a discussion of her son having been on a feeding tube when born premature. When she asked about Clara, I said she had a heart defect, had had surgery, and was now learning to eat.
After the waitress left, my mom sort of questioned why I had told her about Clara's heart, not 22q. At the time, I honestly was just trying to get the waitress to leave-our waiter had brought our food and I was too hungry to discuss chromosome abnormalities. Heart defects are easier for most people to understand.
But since that day, I have thought a lot about this insignificant little encounter, and my feelings about this journey. I've realized that you can't (at least I can't) find out that your baby has significant health problems that might impact her whole life, and then see her miraculously treated and see her grow and flourish without acknowledging that she is a gift. And if there is a gift, there is a Giver. There is no doubt in my mind that there is a Heavenly Father who gave us our Clara, and I can only take this wonder, this gift and find a way to give back in her honor.
When we first found out Clara might have 22q, we told very few people. The possibility of having a special needs child was daunting, and we weren't ready to have people ask a lot of questions, overload us with information they found on Google, or look sad and uncomfortable, not knowing what to say. And when we found out she did have 22q, and we told a few more people, that is exactly what happened. I found myself feeling defensive about what caused it, to deflect any possible blame. I got irritated when people would tell us about their friend's neighbor's sister's son who has 22q and is 11 and 'is just fine, you'd never know!' I went back and forth between wanting to tell them that it is ok to know someone is different, that makes us interesting, and wanted to shout that I didn't care about other cases, I cared about Clara and what this meant for her!
So now, with Clara stabilizing, getting stronger, and life settling down again, it is time for us to focus our efforts on helping people know and understand 22q, heart defects, and what can be done to help those in our situation. We are going to tell everyone who will listen, we are going to wear it on our sleeves. We are going to work with our geneticist to help spread awareness of 22q support groups and we hope to build a local community of 22q friends for Clara. I am wary of the word 'normal', but I know that the mildness of Clara's condition so far means she will have a lot of strength and energy to give to educate people about special needs, so its only fair that we get it started for her. I want her to be proud of who she is, what she has overcome, and the tiny missing pieces of her chromosomes that will make her experience on this planet as complete as any other, in her own special way.
Oh, and we pulled her tube the other night. This girl is going to eat, just to prove she can :)

Barenaked Lady

She hates clothes, and she eats now, so we celebrate with a little song parody tonight...
Chickity China, the Chinese Chicken
(Good luck getting it out of your head now!)

It's been... one week since you looked at us
Cocked your head to the side and said "I'm hungry"
Five days since you laughed at us saying
"Get a big bottle, come back and see me"
Three days since the living room
We realized you don't need tubes, but couldn't tell you
Yesterday... you ate all your food
and you'll still be tube free and hungry tomorrow

Saturday, August 4, 2012


Aunt Sherrie and
Clara's glitter heart
The too-long, hot days of summer have sucked the will out of me and forced me to spend hours playing sudoku on my phone in my house. Ok, maybe it's not just the weather, maybe it's the NG blues.
I hate this tube. I can't wait to run it over with a lawn mower...More on that in a minute.

Watching Barbie movies
A few weeks ago, Clara and I made a trip up to the mountains with my family, we had a reunion up at Big Bear Lodge and had a lot of fun playing with all the other grandkids. Because Todd is often sick with migraines, Clara and I spend time gallivanting about on our own like the Gilmore Girls to give him some respite. My entire family, minus Todd and my brother in law in Virginia, was in town and made it to the party. Because we had our cath lab visit scheduled for the following Monday, we had to keep her from getting sick, and so we spent a lot of time cuddling inside, listening to the rain. She did get to hit her first pinata and she took her first ride on an ATV. She also spent an afternoon watching a Barbie movie with Nana and the kids, and she loved it!

Post surgery,
VERY comfy
The trip to the cath lab was very successful. It started out rocky, with the IV team attempting to put in her IV and me not being able to sit in my chair and listen to the anesthesiologist while she was screaming-I just had to jump up and hold her hand. But the dear anesthesiologist knew I was close to tears, and took mercy on us all. He offered to wait until she was in the lab and use the gas mask to calm her while they placed the IV, out of Mom's sight. He was so kind, he also made sure she was more heavily sedated after the procedure to ensure she would be able to handle the 6 hours after where she had to keep her legs straight. They normally can just bundle these little ones, a good tight swaddle will keep them calm and mostly still. We told him Clara would probably not tolerate that well, and he was great about making sure she was comfortable.

Sleepover with
the nurses!
After reviewing all of that, Dr. Gray (the doctor performing the procedure) came in and reviewed the procedure details with us. He said that most of the time, with little veins in Clara's condition, a balloon would not take care of the narrowing and he believed it would be necessary to place a stent. We had been forewarned of the possibility by cardiology, and had no concerns. We trust Primary Children's and their staff so deeply to always take good care of our baby, we knew they would do whatever was best. He then walked us all down to the radiology department, and I handed my sweet girl off to a nurse. It felt so weird to walk out of there without her-we'd spend MANY hours in the radiology department replacing NJ tubes in April. Usually, she was never more than 3 feet from us, and this was new.
Todd and I were given a pager, and expected to be notified in 2-3 hours when the procedure was complete. We actually left the hospital to get some Subway and kill some time. We then returned to the waiting room and before we knew it, the pager went off, our girl was done!

Preparing for her
first ATV ride. Or
was this before
cath lab?
We rushed to radiology and met again with Dr. Gray. We got to watch a high-speed 'film' of the procedure, filmed through x-ray. He explained that he ended up going in both legs, through 3 places, in order to place 2 stents instead of 1. We watched the cath go in, balloon up, then deflate and go back out, leaving the stents in place. We held our breath, watching her little heart beat, seeing the ties on her ribs and sternum from her open heart surgery, and now the stents. The amazing, live saving bits of metal that keep our girl together! We did have to keep Clara at the hospital overnight, just for observation, since they had messed around in there a bit more than expected. But Dr. Gray was so optimistic about her pressures and the hopes for her right ventricle to recover entirely, and we can't wait to see her prove him right.

After returning home, Clara started a new regimen of de-tubing herself and developing skin problems, over and over. We had heat rash and diaper rash and more impetigo and skin irritation from the tape. She learned to pull her tube by pulling the untaped bit near her nose, pulling the 'tail' that hangs off her, rubbing the tape over and over until it came off, without mittens, with mittens, and she even hooked the tube in her toes a few times and attempted that method. She's smart and wiley, but not yet smart enough to know that pulling out her tube means torture for the whole family.

Ooops. No tube.
Tube replacements are awful. We try to put the tube on the side of her nose that is in the best shape. Her skin on both cheeks is continually irritated, so there is no winning on this. But we pick a side, clean it and put on some cavilon to help the tape stick. She tends to laugh and smile during this process, as if to talk us out of it. Which then makes the next step so much more painful-I hold her hands and kind of restrain her while Todd puts the tube up her nose and down her throat. And the look on her face goes from pure joy to pure terror, it feels like we have betrayed her to the deepest core of her soul. And that part goes quick, but then we have to try to hold the tube in the right spot, to the right depth, keep her kind of still while I try to get the tape on in the right place. Even with the gagging and choking from the tube over, she is so mad and does not want us near her face. She turns her head from side to side and cries and screams and it feels like we're wrestling an 11 pound wild cat. And as soon as we're finished, I scoop her up and cuddle her and she calms down, but does that pitiful hiccup-sob thing that girls do after a big crying fit and it haunts me for hours. I know that sound well, because I am often making the same sound at the same time. Poor Todd, I hope her teenage years come with less drama. One of the times recently when we had to re-tube her twice in one day, after we finished, she turned her head to Todd and told him off. There might not have been words, but she got her message across. She calmly but forcefully babbled at him for about 15 seconds with the maddest look on her face, she made it known that this was not a process that she would continue to tolerate.

We met with Clara's pediatrician yesterday for her 4 month vaccines, and we talked about our NG PTSD. She is going to work with GI and Primary to see if we can get in any earlier-currently we are scheduled for the end of September just to meet with them, not even for the actual procedure. We love Dr. Molberg, she is great about hearing us out and making sure Clara is happy and healthy. She even called me today, on a Saturday, to let me know she wanted to refer us to ophthalmology as well since vision problems are common with 22q. It feels good to know that she was working on Clara, even on the weekend. Clara is so lucky to have such a strong team of professionals, family and friends on her side.

Clara and Addi
Our good friend Eric also came and visited last night. He brought his sweet 18 month old daughter Addi. And here is proof positive that the instinct to feed babies is strong and urgent and ingrained in us at a very young age. Addi was a bit tired and not super interested in Clara for the first few minutes when she got there. But then she saw Clara's tiny bottle with juice in it (ok, mostly water and Thick It, with about 8 drops of apple juice). Immediately, her eyes lit up and I helped her pick up the bottle and held Clara while she put the bottle in her mouth. Clara mostly laughed at us both, not eating anything. But Addi was so happy, and spent most of the night worrying about feeding Clara, and getting mad when she couldn't-I hear you, sister, it makes me mad too! Even at that young age, she just knows, that's what you do with babies. You feed them! For the record, she was not quite as interested when it came time to change Clara's diaper. Guess that instinct is not as strong :)

Flirting with Uncle Nate
The vaccines yesterday have made Clara a bit cranky and fussy. She was up most of last night, and she spent most of today sleeping in my arms. She is usually only in to cuddling when she is tired or cold, so it was nice to have her need me so much today. I miss her so much during the week while I'm at work, though her dad does a good job of sending me updates and pictures during the day. Our little family nest is so snug and comfy, we spend a lot of time watching our little miracle and being thankful that we can plan for Clara's future, knowing she will have a bright and healthy one. And some day, soon, all the NG tubes and supplies will be fed to Uncle Nate's lawnmower. He has a habit of ruining lawnmowers, surely he won't notice a few bits of orange tube and tegaderm in there, right?