Finding "Thankful"...

One Heterotaxy family's thoughts on thankfulness...

This year has brought some major, mind-blowing hurdles to my family. We have seen death chasing our 2 year old Nate, the effects of autism take the ability to sleep from our 5 year old Charley and the devastating emotional trauma of foster care on our toddler twins. Many times I have found myself crying out to God asking, "Why?" And "How?" "Can we really do this as a family...without being a dysfunctional mess?!"

We have had a few years to "digest" foster care and autism, but when Nate was placed in our care as a foster child 2 & 1/2 years ago, "Heterotaxy" meant nothing to us. We had no idea what was in store for us or for the precious child that we vowed to care for as our own.

Fast forward to today...Nate has survived the Fontan procedure, being placed on ECMO for 5 days and 2 pericardial effusions requiring him to return to the catch lab both times for placement of drains. All of this happened within one hospital stay. I honestly thought we wouldn't be bringing him home with us. But, being the fighter that he is, "Pistol Pete" proved me wrong.

Most people would think that his survival would give me enough to be thankful,. But, you, my fellow Heterotaxy families, know that there's MORE to it. Our "thankfulness" comes in odd and unusual forms. We are a unique bunch.

Just this afternoon, I was thankful for a diagnosis of asthma and anemia instead of a diagnosis of arrhythmia that was going to require a pacemaker. This morning I was thankful that Nate didn't "pee the bed" caused by his daily Lasix. Yes, it's the small stuff. Like, taking Nate to Walmart and finding that the tub of disinfectant wipes isn't empty, requiring me to go back out to the car to get my own. A tiny preschool class that's willing to follow precautions for his low immunity to infection equals "thankful"! My 5 year old praying for Nate's heart to continue to be fixed and "go bump bump"...priceless. Unsolicited slobbery kisses, hearing "I love you, Momma!", months without ER visits or hospital stays and most of all...BIRTHDAYS!! We celebrate big!

Every day is a gift. As Heterotaxy families, we all know this to be truth. As difficult as it may be some days, there is ALWAYS something to cause us to be thankful.

Finding our "thankful" looks different and unique. But, as long as we keep searching, we will always find it. "Thankful" is a heart thing and there are no better experts than you, your child and your family on matters of the heart.

Michelle Prichard
(Heterotaxy Hero, Nate, on far left...pictured with his siblings)

Holidays

With the holidays quickly approaching, many of us are faced with the challenges of balancing our medically complex child’s needs with our desire to have traditions and some normalcy. For just a little while, you want to set aside the, oftentimes, chaos of your life and just be a normal family experiencing the magic of the season. For our family, we were faced with the dilemma very early on. Hallie wasn’t due until mid-January but came five days before Christmas. That year, we spent her first Christmas wondering if she would even make it to the beginning of the year. I had planned this perfect day, complete with presents in the morning for our older son and dinner with family. What we got was quite different. We quickly stripped away anything that wasn’t essential and focused on making the day meaningful for our 3 year old, while still being able to spend time at the hospital with our newborn. At the time, I remember thinking Christmas was ruined forever, but what I didn’t realize was that it helped put it in a different perspective. I quickly learned what was important and that has carried through with us for the last decade.
So how do you find a way to enjoy the holidays when this is typically the time of year most of us go into hibernation to try and keep our kids strong? I’ve learned there are a few things that work for us. We plan ahead, communicate our needs with family, focus on the important things, and keep our plans flexible.
Planning ahead is key to my sanity. Procrastinating always ends in disaster because you never know when your child’s needs are going to pop up. Without fail, every time I think I can leave things to the last minute, Hallie gets sick or lands in the hospital. It’s hard to do your shopping when you are staying home to keep your child healthy. I love online shopping, especially Amazon (as a side note- if you shop Amazon Smiles and select Heterotaxy Connection, you get to do your shopping while supporting your favorite non-profit). I can get most things delivered right to my door, everything from basic every day needs to presents. I start shopping early. The last thing I want to do is be trying to get last minute gifts while juggling doctor visits and medications.
We love to be with family this time of year. The holidays mean that much more when you can share it with your loved ones. However, don’t expect your family to just know what you need. Let them know if germs are a concern or if your child’s stamina will not allow you to spend longer periods of time with them. We have had years that we have chosen to stay home and spend the day with just our immediate family due to health concerns. Those have certainly been different but necessary. Make sure your family knows why you might choose to adapt or not participate. Does your child have special dietary needs or things that might make the day go smoother? Rather than get frustrated and upset because those aren’t done, talk to your family beforehand and plan how to incorporate those things in from the beginning.
I’ve found over the years that we try to fit so much in for the holidays. We want to make the day special and we tend to fill it with many small things. Instead, choose what matters most. For Thanksgiving, I want Hallie to enjoy dinner. We keep the morning very low key and let her energy be used for the afternoon. For Christmas, we open presents and then relax, maybe watching a movie or playing a game until dinner time. For New Year’s, Hallie never makes it past about 10:00 so we make sure we do a celebration early for her so she can get to bed on time.
And of course, despite the best laid plans, we’ve had holidays where she lands back in the hospital or is too sick to care. Through the years, I’ve come to the realization that Thanksgiving or Christmas or any other holiday is simply a day. If she’s too sick that day, we do the minimum for the other kids and then choose another day when she is feeling better to have our celebrations. When I have my heart set on celebrating on Thanksgiving or on Christmas, I am devastated when that doesn’t happen. I’ve learned that if I’m flexible and willing to change my plans based on her needs, it makes for a much more enjoyable day.
Holidays with your heterotaxy hero can be hard, but with the right perspective and attitude, you can make them more meaningful than ever before.
Necia Munro
Mom to Heterotaxy Hero, Hallie (pictured with her brothers, Carson and Tucker)

Veterans Day

While Heterotaxy Connection has a global reach, it is based in the US. November 11th is a day in the US to honor those that have served in the military. Read from the perspective of our military families...
* * * * * * * * * * * * * * * * * * * * * * * * * *
Living the military lifestyle is hard, particularly in recent years. There are lots of rules to follow, constant changes, and more aspects of life that seem out of control than usual.
When Lauren was born, we were stationed on the opposite side of the country from most of our family, and for me, further away from home than I had ever been. In many ways, it felt like we had moved to another country, and the adjustment wasn’t easy. When Lauren was prenatally diagnosed, we had 10 weeks before her birth to figure out how to navigate the medical system and insurance with a medically complex child (which anyone knows can be a nightmare) while also trying to learn about Lauren’s new diagnosis. Sometimes it felt like one of those bad dreams where you are calling out for help, but nobody believes that anything is wrong. Many tears were shed out of sheer frustration. Even after getting approval for Lauren to have a non-military pediatrician who had more experience with medically complex kids, authorities at the hospital still tried to convince me to bring Lauren to the on-post hospital for care. They could not promise a sterile waiting environment, not one doctor there had ever heard of Heterotaxy and they didn’t have any pediatric ICU facilities, but they STILL tried to keep our care on post.
After spending her first week of life in the cardiac department of the children’s hospital 2.5 hours away from base, only being home for a month, two life flight helicopter rides, emergency open heart surgery, and several more weeks at the hospital, Tricare (the military’s health insurance system) finally assigned us a case manager. This was the biggest blessing that they could have ever given to us. We have contact with her on a weekly basis when Lauren is in the hospital or approaching a big procedure. When not in the hospital, we connect with her monthly, just to keep her updated. Anybody who has Tricare and a medically complex family member, I HIGHLY recommend requesting a case manager. With her on our side, our Tricare experience has been 90% better than ever. We rarely have to struggle to get referrals approved, and although sometimes getting medication approved has been challenging, we have eventually been able to make that happen as well.
By the time we started to get the hang of Tricare, Lauren had two more helicopter rides, two more surgeries, and several more weeks inpatient. We realized that 2.5 hours away was simply too far for us. This was especially true as we learned that the local hospital did not feel comfortable nor appropriately equipped to treat Lauren, and we knew that every ER visit was an almost guaranteed helicopter flight. We decided to apply for two important programs, both of which I also highly recommend. The first being EFMP (Exceptional Family Member Program…I think that’s what it stands for). This helps ensure that we are stationed in a place where Lauren has access to the care she needs. So, there is no possible way that they could move us to some random remote country. The other program is called a compassionate reassignment. Getting the compassionate reassignment approved, I believe, is what has allowed us to help Lauren thrive. By living within short driving distance of the children’s hospital, we have also had access to many other specialists and therapists who are able to collaborate and provide the best care.
Unfortunately, the compassionate reassignment only lasts for one year, and we are nearing the end of that year. We are now in the process of re-applying to try to stay where we are. If it doesn’t get approved, then we will have to move again and start all over. This means reestablishing care with a new cardiologist, GI doctor, pulmonologist, orthopedic doctor, ENT, feeding therapist, physical therapist, occupational therapist, dietician and pediatrician. It’s not just a matter of finding all of these doctors either. It’s more complicated than that. They need to be able and willing to collaborate with each other, to know or be willing to learn about Heterotaxy (which a surprising lot are not), to allow us as parents to be part of her medical team, and to know when to call the shots in terms of medical emergencies. It took us about 10 months here to finally feel like Lauren’s medical care team was complete and competent. Once they are all established, we also have to get connected with a new medical supply company, as there are some medical care supplies that Lauren needs on a monthly basis. Additionally, Lauren will need another very big and very complex heart surgery within the next year or so. We are not fond of the idea of her being under the knife in the hands of someone who doesn’t really know her whole story. As you can see, moving in the next couple of months is not in her best interest at all, so our current challenge is to convince the powers that be to keep us here. It is stressful to say the least.
All of that said, being a military family with a medically complex child has many benefits. One major benefit is, despite the eternal headache caused by rules and red tape, a very large majority of Lauren’s medical bills have been covered. We would literally be living in a box in an alley somewhere if it weren’t for Tricare. The most important benefit is that the military, in and of itself, is one big family. In fact, the camaraderie between soldiers is probably stronger than family. Throughout this whole journey with Lauren, there have always been others willing to step up and help us out in ways we didn’t even realize we needed help. They have brought us meals, cleaned our house and yard, visited us, helped us move, prayed for us, and willingly carried the weight of Mike’s job when he was not able to be there. Although there are a few other non-military friends who have also helped us in many ways that we will never be able to repay, having our military “family” has helped fill the void that is created by living so far away from our original families.
Mike & Monica Bloom
and Lauren the "Little Ranger"
Photo credit: Simply Joyful Moments Photography

A Legacy in the Making...

My Son, Ryker Jason Warner (Miracle Ryker) was born on March 7th 2012. Prenatally, during a routine 20 week ultrasound we discovered that my unborn baby boy had a very serious condition called Heterotaxy. When Ryker was 5 days old we flew him by air ambulance from Salt Lake City, Utah to Boston, Massachusetts so he could get the help he so desperately needed. Within the first 4 months of Ryker’s life he endured 4 open heart surgeries, by 5 months an intestinal surgery, by 6 months cardiac arrest & 3 days on ECMO, by 7 months old we were given the terrifying news that Ryker also had PVS. The hospital days turned into months & by 10 months old Ryker had faced numerous cardiac catheterizations & had been denied by the heart transplant team.

At 11 months old after 341 days in the hospital our sweet boy was finally discharged for his very first time, unfortunately with this discharge came hospice care and we were told he had maybe 3-7 days left with us. Although I was in full denial & refused to believe what was really happening, we vowed as a family that every day would be cherished to the fullest. We were blessed enough to keep Ryker home with us for 8 full weeks before he gained his angel wings. It was the absolute best times of my life. Times our family will never take for granted!

During Ryker’s sweet life he never stopped smiling, no matter what he went through he smiled, interacted & spoke with his eyes in ways I can never explain. Ryker had the sweetest spirt and touched so many lives in ways you could never imagine. He had a following and support system that spread across the world! My sweet boy had touched more lives in his 14 months, than most do in a full lifetime, he had created a legacy all his own and we knew as a family that it was now our turn to make him proud of us and our accomplishments and we wanted to do it all in his name.

On July 2, 2015 (2 years and 2 months from the day we lost Ryker) our dreams became reality and the Miracle Ryker Foundation officially became a federally recognized 501(c)3 Non-Profit Organization! I cannot even begin to express the joy and accomplishment that came with this! We have now teamed up with a group of amazing people and incredible doctors from Boston Children’s hospital to raise awareness and funding for Pulmonary Vein Stenosis (PVS) the horrible condition that ultimately took Ryker’s life. We hope to one day help save another family from the same horrible fate we and so many others have had to face.

Charity work is not always the best way for all grieving parents to cope, nor is it the only way to create a legacy for your Angel. Everyone has to find something for them that helps them get through each day. I just know for me, having this Foundation has done more for me than I can explain. It is something that, we as a family, have worked so hard for and in a way it’s what makes me feel the very closest to my baby. Ryker’s legacy is all I have left of him, and for the rest of my life I will do all I can to make him proud of choosing me to be his Mom.

-Rachel Warner
(The Lucky Mommy of Miracle Ryker)