Tuesday, March 28, 2017

Thank You

One wonderful Heart Mom is collecting stories of gratitude to put in a book and present to Helena's heart surgeon. Here is our letter. It's something I've been thinking and trying to put into words for a long time now.

Dear Dr,

Because my husband and I try to see humor in everything, we bought Helena a shirt that says "Kiss it Natural Selection, I'm still here!" At the time, we just thought it was cute and funny but the more we think about it, the more we realize how true it is.

If left to nature, Helena would not be here. She was born with a TGA, VSD and pulmonary stenosis. Instead, she's 20 months old and walking and talking and people who meet her are shocked to hear everything she's gone through. If you met Helena today, you'd never know she's a Heart Warrior, that's how well she's doing.

And that's because of you. You are able to beat natural selection, and not only did you beat it in our case, but you do it on a daily basis. You are able to give us, and so many other families the gift of a child who isn't supposed to be here. It's a thought I now have on a daily basis as our family spends time together and enjoys Helena as she grows and develops.

What amazes us is that you beat nature on a regular basis. When we attended our first Heart Picnic last summer, I remember standing on the top of the hill and being in awe of how many families were there. I remember saying to my husband, "Look at this. Look at all these families. Dr. has touched the lives of every single person here, whether he operated on them or not." Those families would not be complete without you. It was such an amazing moment, and such a powerful thought.

It's not just the Heart Warriors that owe you everything - it's their entire families. Without your ability to defy nature, we wouldn't have our precious little girl and her brothers wouldn't have the baby sister they adore. Her grandparents wouldn't have their only granddaughter to spoil. Our lives would be completely different if not for you, our family would be incomplete. And that's true for every child you operate on.

Not only are you able to defy nature, but you have what a few fellow Heart Moms and I call "Dr. Magic". You are a beacon of calm and hope in a world that is full of chaos and fear. I don't know how many times I've heard families say that after meeting you they felt so much relief, and realized that it really is going to be ok. I joke with my husband that you must think I'm crazy because I'm pretty much incapable of speaking to you without breaking down sobbing (I'm even crying as I write this!) with so many emotions, but it's because you manage to not only save people's children, but you save them. You make parents feel safe, and that their child is going to be ok. Your quiet confidence helped save us, and so many others.

Thank you seems like such an inadequate phrase, but it is the best we have. So thank you Dr., for defying nature so that our family can be complete.

Friday, February 10, 2017


One year ago today, we pulled Helena's feeding tube and engaged in what I lovingly refer to as "starvation therapy". She was losing weight, she was puking up more formula than she was keeping down and she was just miserable over all. She would gag if we put a bottle in her mouth and scream and cry when she saw us holding one. 

So one year ago today, under the guidance of her cardiac nurse and her pediatrician we pulled out her NG tube and decided it was time to sink or swim. Either she'd figure out that eating is GOOD or she'd still refuse to eat orally and we'd have to explore getting a G-Tube as a more permanent feeding option. We gave her nothing via her tube, she only consumed what she took orally. We hoped that because her oral aversion was psychological, her hunger would help her overcome it. 

Note the dramatic weight loss, and initial refusal to eat

For weeks I kept track of every calorie she consumed, and weighed her daily until we felt that she had overcome her oral aversion and was gaining and thriving. I have pages and pages of notes like this. For weeks I texted all day with her cardiac nurse who was leading us through this, detailing every bit of food and drop of formula that Helena consumed. For weeks we "made up" her missing calories via a feeding pump all night. Do you know how many calories 1/2 a tub of baby peaches has in it? I do.

There's a cabinet in our kitchen that held all Helena's medical supplies (or at least the downstairs supplies). Yesterday, I sat on the floor and cleaned it out. I pulled out sterile lube, NG tubes, medical tape, stethoscopes and lots of other stuff that we don't use anymore. 

Luckily, there are a bajillion uses for medical tape.

I sat on the floor and just cried remembering how much we struggled, how much we cried, how much we worried and how much we begged Helena to just eat. And I cried thinking about how well she's doing now - she's trying to steal food from anyone she can and was upset that I wouldn't give her a second cookie before her dinner yesterday (I may or may not indulge her a bit too much when she asks for food :) ). She's just come so far. It's been such a long road to get to where we are today. It's hard to believe the journey we went on, and survived. 

As if on cue, Helena came over to inspect the box. She picked up her NG tube and held it up to me, of course only increasing my tears. 

"What's this? My arch nemesis? Oh, ok."

She has lingering effects from the tube and her hospital stays and medical experiences, but doesn't remember it. She freaks out if I try to touch her nose, she hates being restrained, she's terrified of anything even remotely medical looking (the carpet cleaning with its hoses and tanks scares her so much) and she gets super anxious in new places with new people. But that's all understandable, and we can help her with that. 

We don't know when her valve will need to be replaced. We don't know if we'll ever need all those medical supplies again. But for now, and for the immediate future we have an empty cabinet.

Well, except for that candle. Who knows how long that's been in there!

Wednesday, January 18, 2017

The Good and The Bad

Our little girl turned 18 months and to celebrate she got to go to the cardiologist and developmental clinic and has a pediatrician appointment on Thursday! Yay!

First the bad news. We saw Helena's cardiologist on Monday, and while her cardiac functions are great, the artificial valve they put in her heart is starting to leak. This is not uncommon, and unfortunately there's no real way of knowing if she'll develop a leak when they put it in. Some kids do great and can keep the same valve for years and years without issue, and others (like Helena) will need her valve replaced sooner than we had hoped. We go back to her cardiologist in three months, and he'll do another echo (which was super fun - "Ok 18 month old squirmy baby who hates being restrained, you have to hold still while we put this weird gel on you and move this wand all over your chest, be good!") and we'll monitor the leakage to determine when we will need to replace the valve. It's not the best news, but she is still doing great and thriving despite this setback.

The good news is that she's finally walking! She took her first real steps about two weeks ago, and has just taken off since then. She's wobbling down the hallway, and doing her best to keep up with her brothers.

The other good news is that we got a great report card from developmental clinic. Helena has exploded developmentally, and while she is still somewhat behind on speech and gross motor skills she is scoring ahead on cognitive and fine motor skills. Her weekly team of therapists all agree that while she is behind, there is no reason she will not catch up and be completely on track, sooner rather than later. She's not really speaking yet, but she is a baby sign language pro and in the developmental world it is not uncommon for speech to come after all the motor skills. She's on 18 months, and her brain can only process so much growth and change at once - she's hyper focused on the physical development right now that she's letting the verbal go for the moment. As she becomes a better walker, we expect a verbal explosion much like the physical one we've seen so far.

For perspective, she scored 8 months old on her fine motor skills at her one year developmental clinic and at her 18 month appointment she scored 20 months. For her cognitive play skills, she scored 10 months at her 12 month appointment and 19 months now. She's developed much more than 6 months in age in 6 months of time.

What is also great news is that Helena is doing wonderful with gaining weight and growing. She's in the 45th percentile for both height and weight, which is amazing considering at her 6 month developmental clinic she was in the 6th percentile for weight. in a year she's come so much, and is finally healthy and growing appropriately for her age.

She's come so far, we're so proud of her for all her hard work and progress. And we're so proud of our boys who adore their sister and love to "help" with her therapies and want the best for her.