Coping with a Congenital Heart Defect: The First Year

 

IMG_1112

Guest Blogger, Lauren Backe; Mother and Advocate

Various media outlets caught wind of our Jack winning the national Starlight Children’s Foundation’s ‘Design a Gown’ contest— where people across the country were encouraged to design a creative hospital gown for children facing challenges in the hospital. He entered the contest for his sister, Everly, who has a Congenital Heart Defect (CHD). Upon his win, 30,000 comfortable, imaginative hospital gowns will be made and distributed in the likeness of his heartfelt creation: hearts and lots of printed glitter! Since winning, numerous people have approached my husband and I wanting to learn more about CHDs and Everly’s journey with it thus far.

Starlight Gown.jpg

I didn’t know much about CHD until July 2017. I didn’t think I knew many babies who had it (turns out, I do know a few: an old neighbor’s son, a classmate of Jack’s brother, a friend of a friend’s daughter….) CHD is the most common birth defect. I asked LOTS of specialists (everyone we saw in July and August) what could’ve caused Everly’s CHD. They all assured me that I didn’t do anything to have caused it. Everly’s genetic testing came back clean. The heart starts as a tube and grows and branches off from there. From all I’ve learned about fetal heart development- it seems to me- it’s just a complete miracle that so many hearts form “normally.”

Everly was born in August. We found out a few months before birth that she had a CHD that would need to be repaired before she left the hospital. I remember the day vividly. After an ultrasound at around 30 weeks, my local OB said the heart looked a little off and we should get an ECHO to rule anything out. Not expecting to hear anything “bad” at the ECHO, I went by myself. I knew the news wasn’t great when the cardiologist said to me “So you came by yourself, huh?” I left the appointment with pictures drawn of our unborn baby’s heart compared to a “normal” heart and the cardiologist offered to call my husband that evening.

After learning her diagnosis, we set up to find the best surgeon for our girl. We are lucky that there are several “3 Star” rated heart hospitals near by. One particular surgeon at one of these hospitals came very highly recommended by just about anyone you asked. After meeting with him, we knew he was the one!

We met with an Maternal Fetal Medicine Specialist (high risk OB) and set up an induction day so that all of the right people for Everly would be ready for her when she was born. A few minutes after birth, the NICU swept her away to get her lines set up to receive  medication. They also performed an ECHO on her to get more pictures of her heart outside of my belly.

IMG_8360.JPG

CHD is 1 in 100 births.

Everly’s CHD is IAA/VSD (interrupted aortic arch and ventricular septal defect).

IAA is 2 in 100,000. IAA is about 1% of CHDs.  

Everly had the Norwood surgery to repair her IAA at 3 days old. The Norwood surgery for the IAA defect is not commonly needed. We had hoped that Everly would have ONLY ONE open heart/bypass surgery right after birth that would fix the IAA and the VSD. Unfortunately, her heart did not grow as expected between the fetal ECHO and birth, and she was not able to have that surgery (which is a less risky open heart/bypass surgery- STAT 4). STAT levels range from 1 to 5 with 5 being the most complex/dangerous.

Instead, she needed to have a very complex surgery (STAT 5 level). The Norwood corrected the IAA, but not the VSD (some parts of her heart needed time to grow before repairing the VSD). She will need to have multiple open heart/bypass surgeries in her life.

IMG_8368.JPG

In October, Everly was briefly hospitalized for a virus. Thankfully, we were able to take care of her the majority of the time at home with home oxygen tanks/machines.

She had a “cath” (cardiac catheter) in November 2017- this looked at the functioning of her heart to determine next steps- it’s a surgery with intubation and anesthesia but we were only there one night- it is not “open heart”. In the cath, they were able to do some “ballooning” to help buy a little bit of time.

In December 2017, Everly had an additional shunt put in (STAT 4) because she was not yet big enough for the “full repair”- the Rastelli procedure. She now has two shunts- one from the Norwood and then the additional one put in, in December.

In April 2018, Everly was briefly hospitalized for a virus- she needed some extra IV fluids to make sure the 2 shunts in her heart didn’t risk clotting.

The Rastelli surgery will be next. This will put a conduit in- tube and valve and fix the VSD.  She needs to be big enough for the Rastelli (STAT 3). The conduit is bigger than a shunt so there needs to be enough space in her chest/heart for this conduit to fit. After the Rastelli, we will hopefully have about 3-5 years until the next open heart surgery.

IMG_4983.JPG

Approximately every 3-5 years, she will need to have the conduit replaced. When she is big enough for an adult size conduit, the valve in the tube can be replaced through her leg (vs. an open heart surgery). However, the adult size conduit will not last forever and she will need to have the conduit replaced (more open heart surgery).  It is too hard to predict how many valve and/or conduit replacements she will need in her lifetime.

Everly is very medically fragile currently since her heart functions like it only has one chamber (not two like a normal heart), but will hopefully be considerably stronger after the Rastelli surgery. The time between the Norwood and the Rastelli is called the “interstage”- Everly is part of a “Norwood Clinic” where we have a lot of specialists for just a few patients because of the extreme fragile-ness. (If Everly had had the one time repair we initially had hoped for, we wouldn’t be part of this “group”). We hadn’t planned for this (the Norwood surgery) so we didn’t know the specialists. BUT we were so lucky to be handed this amazing team. They are truly amazing and have helped us so much in these very critical months. We will continue to be part of this “Norwood Clinic” until the Rastelli.

DSC_8171-2.jpg

So in short…. What have we learned over the past 10ish months?

Choose joy each day, find joy in small things, celebrate all victories- even small ones, take things one day at a time, try not to take time with family and friends for granted, try to live in the moment, try not to sweat the small stuff, breathe…. This little girl and her strength and Jack’s ability to adapt to all the changes has taught us so much in 9 short months. Everyday, we are grateful for both of them. Perspective is everything.

Follow Jack and Everly on Facebook.

Related Posts:

“Thank you for voting” video by McHenry County Living

10 Things I have Learned From My Daughter’s Diagnosis

 

 

Bibliotherapy is a Powerful Tool for Children: Spotlight and Giveaway!

Sunkissesmoonhugs Giveaway.jpg

I’m sure many of you have seen past posts of one of my favorite teams creating children’s literature, Susan Schaefer Bernardo and Courtenay Fletcher. This dynamic duo have published some incredible books that resonate deeply with children who are coping with separation, loss, relocation and finding resiliency. They are always willing to share their support and resources by donating books to programs and children in need.

They also love child life specialists and want to celebrate our work all year long (not just the month of March)! They are giving away one free paperback copy of Sun Kisses, Moon Hugs to any hospital’s child life department. All you have to do is email xoxo@sunkissesmoonhugs.com with “Child Life Offer” in the subject line. That is it! Don’t miss out on this fantastic resource!

Susan and Courtenay aren’t done celebrating child life specialists. They are giving away a set of all three of their hardcover picture books signed by them, as well as a signed advance review copy of my Susan’s novel INSPIRED.

Sun Kisses Moon Hugs Giveaway.jpg

Choose one or more ways to enter the giveaway:

  1. Sign up for email notifications at ChildLifeMommy.com and leave a comment on this post.
  2. Facebook: Follow Child Life Mommy, leave a comment and tag a friend on the post.
  3. Facebook: Follow Sun Kisses, Moon Hugs and leave a comment on their page.
  4. Twitter: Follow, Like and RT the post to @ChildLifeMommy and @SusanBernardo
  5. Instagram: Follow @ChildLifeMommy & @Sunkissessmoonhugs, Like and Tag a friend in the post.

Good luck, winner will be chosen 4/10/18.

Learn more about their books:

Sun Kisses, Moon Hugs

The Rhino Who Swallowed a Storm

The Big Adventures of Tiny House

INSPIRED

 

Swaddle Created Specifically for Preemie and Hospitalized Infants: Spotlight and Giveaway on Woombie Med Pods

We all know the importance of swaddling babies, but what happens when your baby is hospitalized and attached to all those medical cords and tubes? How can you provide them with a safe and secure feeling using a swaddle without hindering their medical support? Look no further, because Woombie Med pods are here to save the day.

Woombie Med Pods.jpg

Guest Bloggers, Karen Barski and Chelsea Vail

Woombie Med Pods are the first, and only, 360 degree swaddles designed specifically for hospitalized preemies and infants that work around treatment needs and medical devices. Created by a Certified Child Life Specialist and a nurse, Woombie Med Pods were designed with the baby, the parents, and the medical staff in mind!

Patients born prematurely, or full term babies up to thirteen pounds can benefit developmentally from using a Woombie Med Pod while inpatient. We have a pod for bili babies that allows full luminosity of phototheray lights. We have the Woombie Gastro Pod featuring a midsection flap that allows easy access to g-button, colostomy bag, or umbilical site, and we have our Woombie Trach Pod for babies with trachs, ports, broviacs, or post cardiac surgery.

All of our pods feature a patented peanut shape to allow range of motion in shoulders and hips and a four way stretch fabric that promotes flexion while still cocooning baby in a womb like environment. The double zipper allows quick access to the patient’s upper or lower body for medical procedures or diaper changes and prevents hyperstimulation from wrapping/unwrapping.

Woombie Med Pods support Family Centered Care Initiative, healthy sleep and can be single patient or multi patient use. These can be purchased at WoombieMedPods.com or by calling 1-833-MED-PODS.

Vail and Barski

Mompreneurs, Chelsea Vail and Karen Barski are also available via email to help you secure an order with an electronic order form if you prefer. info@barskivaildesigns.com or sales@barskivaildesigns.com Be sure to follow Woombie Med Pods on Facebook and Instagram.

Enter to win a $30 credit to purchase a Woombie Med Pod of your choice!

Med Pod Giveaway .jpg Choose one or more ways to enter:

1. Sign up for email notifications at Child Life Mommy and leave a comment below

2. Facebook: Follow Child Life Mommy, tag a friend and leave a comment on the post

3. Facebook: Follow WoombieMedPods and leave a comment about the giveaway

4. Twitter: Follow, Like and RT the post to @ChildLifeMommy

5. Instagram: Follow @ChildLifeMommy and @WoombieMedPods, Like the post and tag a friend.

Good Luck! Winner will be chosen 3/22/18