Tag Archives: worries

Presenting our 19th warrior, Gabby!

I don’t know what I love more about this family.. The fact that we live in the same state or that we have SO much in common with our stories! Looking at Gabby’s photos, you can’t NOT smile. She is one adorable kiddo, who’s going to go places. Actually, I could make a really long list of reasons why this family rocks, but instead I ask you to read Gabby’s story. Her mama does an amazing job:

“My pregnancy was a healthy and long one (2 weeks overdue), so I had to be induced. Gabriella Gross entered this world on October 27, 2011, and was quickly labeled a beautiful healthy baby girl. About 3 hours after birth, we began missing the first signs of CHD. Gabby didn’t want to wake up for like 5-6 hours. All the nurses were freaking out and telling me to wake her up and feed her. I kept trying to wake her up. She didn’t want to wake up. I didn’t really know any better so I actually wasn’t nervous and eventually she woke up.

At home Gabby and I began the process of sleep deprivation and breastfeeding, but again I missed the same sign that my little one was basically sleeping through the night on the first week. I joined a local lactation group where I could weigh and feed her, and I quickly noticed Gabby never ate over 1.5 ounces at any feeding. Plus, she would fall dead asleep after eating. I also started noticing her weight was dropping off. But I had two pediatricians and two lactation consultants telling me this baby is healthy, “look at those cheeks”, “this baby is getting everything she needs”, and “your milk supply is fine”. Ironically, I was even given a therapist card and I was told maybe it was postpartum blues.

Gabby started getting older and more awake, and then she wanted to eat, what felt like, every 45 minutes. I decided I didn’t have enough milk so I switched to the bottle when she was about 2.5 months. I remember my girlfriend feeding Gabby the bottle and saying “I know why you didn’t breastfeed, this girl won’t even finish a bottle without stopping and pausing numerous times.” Even after a month of bottle feeding, Gabby wasn’t gaining much weight. She had fallen from 50% to 15% in weight. Still, the pediatrician said this is such a healthy baby, and being a new mom I went home. Another month passed and I was visiting a friend in St. Louis when we weighed Gabby on the baby scale at a children’s museum. This time, she hadn’t put on any weight. But I thought the scale must be wrong.

Fast-forward, and Gabby is now 4.5 months old. It was time for her 4 month check up. I had a list of questions I wanted to ask the pediatrician that morning (1) Do you know why Gabby would turn purple when we go up to the mountains? (2) Do you hear Gabby’s grunting when she tries to do tummy time……like she’s working so hard? (3) What do you think of Gabby’s weight and feeding? Well, I never got to ask my list of questions (which ironically were due to her heart problem), because Gabby had cold symptoms during RSV season. Because of the wheezing the doctor pulled out the pulse ox machine. After 10 minutes later we are off to the hospital in an ambulance (her pulse ox was bouncing between 60 and 80). RSV and other tests were negative, so eventually an echo was ordered for the following morning.

March 15, 2012 is a day I will never forget. The echo technician arrived at 7AM (before Joe even got back to the hospital). She told me, the doctor will review the results today and call you this afternoon. The echo begins, and I could tell the technician was getting frustrated with Gabby’s lack of cooperation. So she said, “I’m going to go find her a pacifier” (even though I told her Gabby doesn’t like pacifiers – probably another sign we missed). The technician came back and started up the echo again, and after a couple of minutes she says, “oh the doctor is going to stop by on his way in to work”. THUMP THUMP THUMP went my heart and I just felt like puking and crying. I knew something was really wrong when the doctor was going to stop in on his way to work.

The next words I heard that day many CHD families understand…. being told the diagnosis that your child has a severe congenital heart defect that would require a lifetime of surgeries.  Gabby has been diagnosed with Tetralogy of Fallot with Pulmonary Atresia and MAPCAs. MAPCAs stands for Major Aortopulmonary Collateral Arteries which is actually rare; about only 300-500 kids a year are born with it. You know it’s rare when we were interviewing doctors and they wanted to do an echo for free, just because they wanted to see the MAPCAs again.

GABBY LIVED FOUR MONTHS WITHOUT A PULMONARY ARTERY.

Gabby’s MAPCAs were so large, they were adequately compensating although she was obviously starting to struggle more.

Gabby wasn’t diagnosed during ultrasounds, and no one heard the murmur or checked a pulse ox before leaving the hospital (the pulse ox would have caught it).  Sometimes I am sad when I look back on so many of the missed signs. That if I had been educated and I had known the signs 1) she slept and slept and slept the first 3-4 days (and later at 3 months old she would fall asleep while playing) (2) feeding wasn’t going well (3) we took her to the mountains twice and she would  turn blue (4) she was grunting or heavy breathing when she tried to roll over or do much activity (5) and she was even retracting when she was breathing (6) she did have rapid breathing rates which I know can’t help but see on old videos. But I cannot be sad or resentful for things that I cannot change. I only hope that I can help change the world that so many families live in. I hope to help change the world of CHD for the better. I hope to be a resource to new families with CHD, and I hope to raise funds for research for CHD, and hopefully I will continue to educate as many pregnant family and friends as I can on the signs.

Gabby had her first heart surgery (all defects corrected)…

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Gabby, post-op..

and she is doing great. She will need many more surgeries to replace her pulmonary artery as she grows, and her MAPCA’s have a high risk of getting smaller rather than getting bigger. But Gabby is doing great right now!!

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She walked at 11 months (even after an open heart surgery at 7 months). She is a thrill seeker at 15 months (loves swings and climbing and riding any moving car or horse). She is so interactive with us and is trying so hard to start talking. I can’t imagine life without her, and I’m so glad she was born in 2011 and not 1951. I pray daily for our family, families like us, pulse ox legislation and stem-cell research.”

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Right on! ; )

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Gabby enjoying a hike with her family. : )

changes.

It’s been a full month of school for Natalie and she’s been doing fantastic. So fantastic that I have to document this. I am so excited to see what else she does. There have been some pretty incredible changes going on with Natalie.  She has gone through several years of physical therapy for gross motor issues but since she’s started school she has been running, even jumping! (she has never jumped off of say.. a step, since..well never) and picking up those knees like a champ! She keeps up with her big brother and classmates, too! She moves like a 5 year old now. The amount of changes in her physical abilities has skyrocketed in only a month of elementary school. There’s something about that new title of “kindergartner” that seems to be a big force for her. It was something that I never expected. I survived the first week with Natalie in school I threw all caution to the wind and sort of just let it go. I stopped worrying about her so much. I stopped comparing her to James. I stopped expecting something bad to happen. I stopped. Instead, I starting changing how my thought process was going with our new adventure…

She’s in good hands. 

Indeed this kid is. She’s in perfectly good capable hands. During her first month of school, she has endured a whole lot. And every incident, illness, and upset moment involved someone else to protect her. I won’t lie and say that a tiny part of me wanted to be there to take over the situation(s) instead. But if I keep doing that she’ll never grow up. She’ll never get to experience life away from mom’s shadow. A huge disservice to her if I immediately jump in every moment, bad or good.

For the first month of school Natalie has successfully (and supremely) handled a raging UTI (poor kid..oy), a punch to the chest by a fellow classmate, a classmate’s birthday party, a nasty cold (while taking her 1st major test of the year where she placed VERY high!!), and stomach virus. There are a few things more we can take from this..

Yes. Natalie has half of a heart and by technical standards, she is a little delicate under that skin. Her heart is without a right side, but the left side is so strong! It amazes me every single day how well she copes. I call this time of her post-Fontan life “the prime”. It really is the prime of her life in regards to how strong she really is. And I think that this prime time will last a long time. Is it okay to get a punch to the chest? Absolutely not. Thankfully, she took quite a blow but was completely fine. Phew. As a result, the parents were notified and it seems like this boy has calmed down. Kindergartners: I just don’t see how a teacher can handle 20 of ’em all at once.

2 days after the incident, I was walking Natalie to school on a nice cool morning, with James behind us. She says… “You know, my teacher told the class about my special heart. She told them to be careful with me and to never push or punch me. Then I showed them my scars.”

Luckily I was wearing sunglasses that morning to hide my tears behind them.

Totally out of the blue she tells me this. I told her how proud I was of her and I asked her how she felt about showing her scars and the teacher telling the whole class about her heart. “Pretty good” she says. Pretty good indeed Natalie. Since the incident with the chest punch, no one touches her unless it involves a hug, a tap on the head for “duck, duck, goose”, or hand holding.

Here are some more recent photos of the Queen with her brother and some very special friends at a Broncos game!! enjoy ; )

community and loss.

When the CHD community loses another fighter, the wave of shock and sadness never recedes fast enough to take a good deep breath until the next wave.

When I hear about another loss, it’s just as devastating at the first loss I ever heard about when I entered this community 5 years ago. It never gets easier. In fact, it gets more difficult to bare. The weight of sadness on the heart is too heavy to hold. It really does pull you down. I want so badly to hug these parents who experience these losses and it sucks so much that I can’t.

In our journey we haven’t yet met too many families in Colorado affected by CHDs. A few, but not many. And in our journey I have yet to meet a family who is affected by the loss because of it. I’m sure in some Freudian way I’m doing that on purpose, to avoid the pain or something. Because it will boil down to something that every parent of a CHD survivor hates to confront…

their child’s own mortality. It is awful to feel that fear because first of all, the most recent losses and every past loss has zero to do with how I feel. There’s the guilt of even daring to “go there” with your thoughts. How dare I even think about my own crap when there’s a parent shedding tears and enduring such excruciating pain? I don’t have the right.

But I’m human. We’re all human and we’re all in this shit together. Despite our own fears, worries, guilt, tears, and anxiety, we pull together.

I don’t tell Natalie about the losses.

She sees the beautiful photos of warriors who are still with us and are not on this earth. I don’t decipher the 2 for her. So while so many of us mourn, show our support and shed tears for the fallen,  the only thing I can do about it, once it hits home, is to hug my own warrior a little more and just keep appreciating every second with her. The smell of her hair, the dimples on her cheeks, and that wonderful belly laugh.

 

health plan.

When I met with the school nurse.. well..the district-wide nurse a few months ago I was so happy to get the elementary school prepared about Natalie. She’ll be the only child in her school with a severe CHD, let alone half of a heart, so I thought “yup, let’s do this”. Everyone is always really nice to talk to which makes this anxiety-filled mom feel at ease. When I first sat down with the nurse she immediately shows me all of the printouts she acquired about single ventricle hearts and Tricuspid Atresia. She confessed to have never met a child with a CHD like this and I told that definitely didn’t surprise me.

I spent an hour talking with the nurse and we drew up a really great health plan for Natalie. This plan stays within the school system and follows Natalie as she climbs up to each new grade. We can revisit the plan anytime and change things if needed. Plus, the principal, assistant principal, everyone at the school is made aware of the health plan. More easily put- every major official at the school is prepared. The nurse and I listed every single tiny thing we could in the health plan. I knew that a few weeks later we’d be seeing the cardiologist for Natalie’s 6 month heart check-up so I let the doc take a good look at it. She scanned the document for a good minute or so..”Looks great! I wouldn’t change a thing!” I thought I listed too much and she said that’s what she likes about it. The cardiologist gets a little worried when not enough is listed on these health plans for these CHD survivors.

Sorry for the bad copy. The school printer was on the fritz that day. But this gives you can idea of what’s included. We made sure to include things that would help identify what Natalie’s normals are and what’s definitely not normal. The school’s front office secretary confessed that she’s a little nervous. You see, she would be the first one to care for Natalie if she comes to the office. And she’s in charge of making parent phone calls. So I was warned that I may get several in the first month or so. This is why I’ll be taking online courses at home, only a few short blocks away.

Luckily, Natalie will have the same kindergarten teacher that her big brother had. She is very comfortable with Natalie and is well aware of her “special heart”. I think that’s what’s going to make it or break it. I don’t think it will break it.

I found out that same day of planning this with the nurse, a 7th grader in the local middle school and their parents just completed their health plan. Want to know what the disability was?

Tricuspid Atresia.

Yup! So maybe it’s not as uncommon as I thought. Crazy isn’t it?

no apologies.

If there’s one thing I won’t ever do again is apologize for how well Natalie is doing. Sometimes I use a simpler word to explain her current condition: stable. It’s quick. It’s easy. It’s straight to the point and easy to understand.

But in actuality Natalie is more than that.

Not a single day goes by where I don’t feel proud and lucky to be a “heart mom” of a kid who reminds me of why I’m so proud and lucky. Without seeing her scars you could never tell how this huge 44 1/2″ tall and 42 pound kid had a severe hypoplastic right heart. When I’ve had the chance to raise some extra CHD awareness (spreading the knowledge everywhere we go) strangers are stunned. So am I! I’m not even sure if stunned is the right word. I need a more severe word.

In the CHD world you are surrounded by such a wide mix of situations, stories, and struggles. No two stories are ever (or will ever) be the same. Then if you factor in how even cardiologists, specialists, pediatricians, and adult cardiologists depend on these current survivors as new scientific guinea pigs, well then it sort of becomes even more awesome to just blow their minds. Even they don’t have all of the answers or total understanding of how one child can pass away from a defect that another child thrives with.

She’s more than stable. She’s doing fucking fantastic. I sometimes catch myself saying “I’m sorry” more often than I ever need to. A bad habit that stretches from “I’m sorry for moving too slow”all the way to “I’m sorry that Natalie didn’t need a feeding tube”. Let’s get real here- it’s slightly uncommon to hear about children thriving and doing fantastic in the CHD world. Are there others just like Natalie? Absolutely. Are there too many not thriving like Natalie? Very sadly, yes. Everyday I feel a little guilt seep in (and on top of the guilt already piling up) when I read stories and see photos of children and adults not doing as well. Even pangs of guilt hearing about 6, 8, or even 12 multiple heart surgeries. Natalie and I sit there with her #4 and don’t know why it’s only 4. It actually makes me feel really bad. Which is probably really stupid.

Yeah. It’s definitely really stupid.

No guarantees. No certainties.

The future of any child is uncertain. My future is uncertain. Your future is uncertain. In life, as we all know, there are zero certainties and guarantees, except for one: we all float away into the big blue sky someday. You enjoy what you have for as long as you can. You take what you can get. You can get as close to certain as possible. At least in our family’s experience, we don’t know the meaning of certainty too well, and Natalie’s prognosis is only scratching the surface. We know what “for a long while” means. Maybe that’s the only close to certain thing we know.

When you have a child diagnosed with such a severe illness, the first thing you fear thinking about is what’s going to happen to them as they grow up. Over the past 5 years we’ve handed over our desire to control Natalie’s condition. We have learned to just leave the chips as they lay.

Natalie has reached the age of talking about what she wants to be when she grows up. That’s when you are forced to really face the big uncertainties and the big what ifs. Or at least you feel a little forced because like with every child, heart healthy or not, you want the best for them. You want to say “yes absolutely, you can do that”. But even with my six year old son who’s totally healthy, I can say “yes absolutely, you can do that” but how do I know that it becomes 100% guaranteed. The same with Natalie. She has been really interested in watching NY Med with me. When she comes into the room I always warn her with “this part’s going to be really bloody.. are you sure?” And when I try to cover the computer screen she gets really upset. She wants to see the heart surgeries, the bloody aortic surgery scene, and the gun shot wounds. While I sit there and get a little queasy, she smiles with her green eyes completely wide open. She waits for the next scene with something bloody going on and asks me all sorts of questions. She tells me that she wants to be a heart surgeon or a nurse. I tell her, “heck yeah!”

We’ve caught Natalie reading her daddy’s Anatomy books before. Well “reading”,  because she really likes the pictures. Some of those illustrations are very realistic looking. She tells me that’s what she likes about it.

Does this make it certain that Natalie will become the next heart surgeon or veterinarian? Obviously not. I do wonder if Natalie is really into the whole medical thing because she’s meant to be or is it because she knows that she’s had surgeries and it’s sort of like putting missing pieces of a puzzle together?

None of us know and not even Natalie.

While her future is uncertain we do know that Natalie is a very determined little girl. She has already sailed through her 5 years of life with incredible strength and determination. More than all of my 33 years put together. No matter what she does, Natalie will get it done. I guess you could say that it is a guarantee that Natalie will fight to the end. Whenever that is.

She’s also stubborn enough to be a surgeon.