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.

Wednesday, October 19, 2016


Helena had her 15 month well baby checkup today.

She is in the 40th percentile for weight. Her pediatrician said he's no longer worried about her weight, and said we can make the switch to milk from formula once we use up what we have left.

Take a moment, and look at that growth chart. It's also missing time she was in the 3rd percentile. Not long ago, she was barely on the growth chart and today she's in the 40th percentile. She hasn't been that high since she was born. This is the highest percentile she's been in since birth.

For Helena to get into the 40th percentile and both her cardiologist (who I sent the pic of her chart to immediately) and her pediatrician to say they're no longer concerned with her weight... Well, it's amazing.

The struggles we endured to get her here were tremendous. Months of NG tubes, oral aversion, puking... I would beg her to just eat. I didn't even care what - candy, juice, sugar, cookies.. Anyything. I would have gladly given her a bottle of Kool-Aid if she would have drank it. You take for granted that your kid will want to eat, to have to face the horrible reality that putting anything in her mouth makes her gag is terrifying.
Just back in March, she was fully dependent on the NG tube for all of her feedings, and was barely on the growth chart. She was puking up more food than she was keeping down. I was obsessively weighing her on a daily basis, hoping for any increase, no matter how small. I would celebrate even a one ounce gain, but more days I would stress about a loss. Even just maintaining her weight was a sort of victory. Our days were stuck inside, covered in puke and we were all miserable. I'd have to restrain her and shove a tube up her nose multiple times a day, only to have her pull it out, or worse, puke it up. As awful as it was for us, I can't even imagine how horrible she felt.

I honestly didn't believe we'd get to where we are today. We were weeks away from setting up a g-tube surgery when Helena finally was able to eat orally. After her surgery, I was convinced that she would regress back to needing the NG tube, but she surprised me. When her nurses told us that she took 6 ounces of Pedialyte from a bottle after her surgery I cried with relief.

I cried with relief again today when her pediatrician told me she's in the 40th percentile. It's just something I never thought would happen. I almost didn't even let myself think that it could happen so I wouldn't be upset when it didn't, if that makes sense.

Today, Helena is thriving. She'll eat anything we put in front of her, and will even try to steal food from us. She's not only eating orally, she's enjoying eating. She's gaining weight, and she's progressed so much. She's like a different baby than the one we knew just a few months ago.

She's cruising, sitting, crawling, and is getting closer to walking every day. She's learning and using more and more baby sign language, and is saying "da-da" and "ma-ma". She's curious and loves exploring her world and trying new things.

New things like bounce house slides

I'm still going to weigh her on a fairly regular basis, and I'm sure I'll always be concerned that she's not gaining enough, but for now, she's ok. She's ok. We did it. We got her to a place where she's eating successfully and is able to not only maintain, but increase her weight. We got her to place where she's not just surviving, she's thriving and loving life. She's just so happy, and we can't even express how much that means.

Thursday, July 14, 2016

The Difference a Year Makes

A year ago, I went in for an NST and ending up being induced and having our special little girl.

A year ago, we didn't know what would happen to Helena when she was born. We didn't know if she'd be born blue, if she'd be able to breathe on her own, or if she'd need surgery right away.

A year ago, we had no idea we'd spend months battling feeding tubes and reflux and fighting for every ounce our little girl gained.

A year ago, I didn't know what oral aversion is.

A year ago, I never thought I'd be an expert at dropping an NG tube or programming a feeding pump.

A year ago, we didn't know how to work a pulse-ox machine, or how to read an EKG, or what a normal baby's blood pressure should be.

A year ago, we didn't realize that not only would we be getting speech therapy, but also physical and developmental therapy to help our little girl catch up.

A year ago, we never could have imagined how loving, careful, understanding and adaptable our boys could be. Or just how much they too would love their little sister.

A year ago, we weren't even really sure what was wrong with Helena's heart.

A year ago, we didn't know when she'd have to have corrective surgery, or even what that corrective surgery would be.

A year ago, we didn't know how much love, support and care all of our friends and family would shower on us while we went through one of the hardest times in our lives.

A year ago, we had no idea how much we'd come to love this little girl, and just how scary it would be to hand her over to her medical team so they could fix her heart.

A year ago, we had no idea how incredibly grateful we would be to the doctors, nurses and everyone else who helped fix her broken heart and get her to where she is today.

A year ago, I couldn't even think about Helena's first birthday party because I was so scared she wouldn't be here for us to celebrate it.

A year ago, we weren't able to hold our new baby.

A year ago, we didn't know all the challenges this little warrior would face, and eventually overcome.

A year ago, we didn't know how long she'd be in the hospital. We didn't know we were looking at a month-long stay.

A year ago, she was sedated and intubated while we figured out what our gameplan for her would be.

Today, Helena turns a year old.

Today, Helena is babbling like crazy.

Today, Helena is army crawling anywhere she can.

Today, Helena is eating not only her formula, but real people food too - and loving it!

Today, we no longer have a feeding pump or a pulse-ox machine in our house - because we don't need them.

Today, Helena is making huge progress in all areas of her development and no one has any concerns that she will one day soon be caught up to her peers.

Today, her brothers love her even more than they did when they first met her.

Today, Helena has a mended heart.

Today, we cannot begin to express our gratitude to everyone in our lives who showed their care, concern and support during the last year. Without it, this hard year would have been even harder.

Today, our medical team is more like family. Our gratitude to them knows no bounds and we can't imagine not having them in our lives.

Today, Helena is snuggling and loving and wants to be the center of everyone's attention and love - and she often is.

Today, she is happier and healthier than I could have ever imagined.

Today, we are home as a family of five.

And today, we celebrate this little girl's life.

Happy Birthday Sweet Girl, you are so very loved.

Tuesday, April 5, 2016

Adios Tubie!

Goodbye NG tube!!

As of this morning, Helena is officially gaining weight even without the night time NG feedings! We've gotten the all clear from her cardiac nurse, her pediatrician and her nutritionist to cut it out completely! It's amazing to think that in less than two months she's gone from completely NG tube dependent to totally off it. It's been a long, stressful two months full of scales and weight checks and food logs, but we've done it!

She's so happy without that damn tubie!

I can't even express how happy and excited I am about this. It was my long term, super reach, thought it was unattainable dream goal to have her eating orally 100% by surgery and we've done it! I honestly didn't think it would happen, but with the care and dedication of our team we did it and we're just all so happy!

Celebratory mohawk. As you do.

Everyone tells me that if a baby goes into surgery eating orally, they go home eating orally; but because I'm weirdly superstitious about these things I'm not packing up her NG supplies (which of course, I just reordered before we started the no NG at night experiment) until we're home and doing well. I don't want to jinx our progress, but I'm optimistic that we won't be needing any of it anymore.

Since coming off the NG tube Helena is a completely different baby - she's rolling all over, sitting up better, babbling more and more each day and is just so much happier. She's curious and wants to explore her environment and is getting frustrated that she's limited by her low muscle tone and inability to crawl and sit up on her own.

She still manages though. 
"What is this thing on my counter?"

"A cord! A cord!"
Why do babies all have a fascination with cords? Or is that just ours because my Husband is a giant electronics nerd/hoarder?

It's hard to believe by looking at her that she's going in for major open heart surgery in less than a week. She looks great and if you didn't know better you probably wouldn't guess there was anything wrong with her. Her oxygen levels have been in the mid 80's, which is right where they should be for her. While she needs the corrective surgery, she doesn't need it right now. We're choosing to do it now because she's doing so well.

Monitoring her O2 levels has become a bit more challenging...

For me, this is both good and bad. It's good because she's strong and healthy and bigger and in a good place right now to undergo such a serious operation and hopefully bounce back quickly. Because she's doing so well we're all hoping it will lead to an easier recovery.

It's bad because she's doing so well! Of course after surgery she'll be on restricted activity (as much as you can restrict a 9 month old) and we do expect some regression which sucks because she is doing so well right now, and developing new skills every day. That most likely won't be the case for a few weeks post-op, which is totally normal of course, just unfortunate.

So until Monday (Surgery Day), we're trying to pack on the pounds, and just enjoy our "normal" as much as possible. 

Yes, I'm kinda freaking out and emotional about the whole thing, but no, I do not want to talk about it. I appreciate all the offers and support, but I prefer to live in denial until it's actually happening, thank you very much. 

It's funny how differently we handle things - I think this week is so much worse because my imagination runs wild with all the horrible things that can happen and I don't like waiting or the unknown and I'm a nervous anxious mess. My Husband thinks next week will be much harder when we're in the hospital dealing with whatever might happen, but for me, that's easier. I can deal with what's happening, wondering what will happen is so much worse for me. 

What's also funny is that My Husband wants to know everything and I want to know nothing. We met with her surgeon again, and he went through the surgery in detail. This brought My Husband comfort. It totally freaked me out. But on the plus side, this was the first time I've met with our surgeon and not burst into tears like an emotional lunatic so that was positive. I managed to hold it in until we were in the elevator this time. I swear, there is something about that man that both brings me comfort that he'll take good care of her and yet makes me sob uncontrollably. He probably thinks I'm nuts.

We have Pre-Op on Thursday where she'll go through a physical, blood draws, EKG's, echo's and probably more. She's going to hate it, but it's necessary. Then Monday is our big day. 

I'm not a hugely religious person, but as the saying goes, "There are no atheists in a foxhole" and well, we're in a pretty big fucking foxhole right now. I'm reaching out to any and all options that might play a role in helping our little girl through this. On Monday, any thoughts, prayers, positive vibes that you want to send our way would be greatly appreciated.

Wednesday, March 23, 2016

Too Tired for Target

Sometimes, when you feel like you kinda got your shit together your kids will make sure to remind you that you don't. Like yesterday.

My Guys are usually very well behaved when we're in a store. We've never had to abandon a shopping trip due to their behavior... Until yesterday.

My Guys are in school (preschool and Pre-K), and normally they get done at noon. This month they're in an enrichment cooking class that has them going until 2:00. This is a long day for them, and they are more tired than usual when they get home. I'm not making excuses for shit behavior, I'm just setting the stage.

So yesterday, I had told them that while the babysitter was here watching Helena, I'd take them to Target to buy some Easter decorations. We're hosting Easter at our house this year, which was a bit of a surprise, but it means that we need to decorate for the festivities rather than just leaving my husband's birthday decorations up until My Little Guy's birthday.

My Guys come home from school, and play outside for a bit until the babysitter arrives. I then load them in the car and everything seems normal. We get to Target. My Big Guy keeps trying to go in the out door, and I have to yell at him to stop because he's going to get hurt when someone is actually exiting and it swings open. This is unusual behavior for him.

We get inside and he asks if he can ride in the cart. I'm like, dude, no. You're almost 6. Walk your ass around the damn store. He whines that he's tired. Tough it out, you're not riding in the damn cart.

We make our way over to the Easter section after grabbing a few other items and as we get into the aisle, My Little Guy immediately loses his shit and starts crying. I ask him what's wrong, and he points at this horrible pre-made Paw Patrol Easter basket and says he wants it but he knows I won't buy it for him (he's correct).

Let's just pause here for a moment to discuss how awful fucking Paw Patrol is. I hate that shit. First of all, what the crap is wrong with all those people in that town that when they have an issue their first thought is to call that weird kid who doesn't seem to have any parents and his fucking DOGS?? That just doesn't make sense. Everything about the show is annoying. Everything. I want to punch that Ryder kid right it the face after I mess up his stupid hair. Secondly, with the bazillion items of merchandising they have created for this stupid show, would it kill them to put Skye on any of it? I've seen her on some of the "girl" toys and clothes but she's almost always missing from any of the boy stuff. My Guys have, on more than one occasion asked why she's not on their stuff and I have no good answer. I mean, I'm not one to get all riled up over feminist issues, but why do you have to cut the girl dog out Nickelodeon? That's crappy. And another reason I hate Paw Patrol.

Ok, back to the story. So My Little Guy is losing his shit over this stupid Paw Patrol Easter basket and while I'm talking to him about this, My Big Guy takes the opportunity to just straight up lay down on the floor in the middle of the aisle at Target. You know, as you do. I calm My Little Guy down and turn and see this nonsense and ask My Big Guy what he's doing. He replies that he's tired, and I won't let him ride in the cart. Yes. It's clearly my fault that you're laying down in the middle of Target. Sigh. I tell him to get up and that's it. We're done.

I fully abandoned the cart in the aisle, took them each by the hand and walked out of that Target. I get them in the car and basically ask them what the crap was going on in there. They really didn't have any answers other than saying how tired they are, and asking to go home to lay down. I mean, ok, I guess if you're so tired that laying down on the nasty-ass floor of Target seems like a valid option you're not just saying that. Clearly this trip to Target was a mistake as we were totally THAT family with the melting down kids walking towards the door.

I got them home, showered and fed and they were both half asleep on the couch before 7:00. They weren't lying.

So today, while they're at Tae Kwon Do, I'm off to the party store to hopefully buy some damn Easter decorations in peace. And without anyone laying on the floor.