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Parent Perspective Presentation at UTSA Medical School

 

Yesterday we were honored to be asked to The University of Texas – San Antonio Medical School to give a presentation on the ICU parent perspective for pediatric residents and medical students.

We discussed things like how much continuous time parents actually spend in the hospital when their child is inpatient, parent involvement, bedside manner, family interactions, and factors like stress/anxiety/PTSD. We’re hopeful that by sharing our views we can bridge the gap with communication and help create an understanding for both sides.  It’s a hard situation from both perspectives — the doctors AND the parents, especially in the ICU.

Did you know that doctor burn-out is also a huge problem? Doctors lose sight of why they wanted to become doctors in the first place and we wanted provide real stories and insight about how they’ve changed our lives. Without our amazing doctors and medical teams, our little girls wouldn’t be here today. We have so much gratitude and love in our hearts for everything they do. They work long hours and make sacrifices in their own lives. We count on them every day and we hope they know just how important they really are to our families.

IMG-4472
Eloise and Addie on a camping trip to celebrate Addie’s 2nd Birthday.

 

Let’s Make a Difference. Let’s Spread Awareness.

We’ll wrap this series up by sharing our interview which aired today on the news! Click here to watch! Take a minute to check it out and share with someone you know. Maybe it’s a fellow heart parent, another heterotaxy family, or a friend who knows nothing about congenital heart defects. Let’s make a difference with CHD awareness!

We hope you enjoyed our series this week on The 5 Love Languages of CHD Families: Words of Affirmation, Acts of Service, Gifts, Physical Touch, and (Quality?) Time. Our goal was to inspire, teach, and spread awareness. While these posts use personal experiences as heart parents, we know anyone who is struggling with a medical condition or a serious diagnosis can relate. 

The 5 Love Languages of CHD Families: (Quality?) Time

CHD Love Languages - Quality Time (2)

(Quality?) Time Spent

It’s hard to focus on the positive when so much is going wrong. But there are positives, even if they’re silly or lighthearted. Today’s post is more upbeat and will hopefully give you a much needed smile.

 

Quality Time Spent…

…giving our warrior meds means we now have the skills to use and draw up a syringe.

…fortifying bottles means we’ve upped our math game and can calculate the exact kcal it needs to be.

…in the hospital means we know how to sleep in hospital chairs and how to survive on bad coffee.

…waking up extra times to give feedings or meds means we get to hold our warrior just a little bit more.

…going to tons of doctors appointments means that medical abbreviations just roll off our tongue (Cool skill! Not to mention your calendar is super organized!)

…staying in quarantine because of germs means you have an excuse to get out of social obligations.

…in the car traveling to medical care means more time talking as a family.

…relocating to a different city to be at a better hospital means you get to try new restaurants.

…wiping everything down with anti-bacterial wipes means your kid understands the value of cleaning.

…with a hospital monitor means you know what an appropriate respiratory rate, blood pressure reading, and sat range is for your child. (And what that even means!)

…at the Ronald McDonald House means bonding time with other families going through similar challenges.

…away from your home and pets means you don’t have to pick up poop. At least for a little while.

…worrying and crying about your heart warrior means they are so very, very loved.

 

What are your positives?

The 5 Love Languages of CHD Families: Physical Touch

CHD Physical Touch

The 5 Love Languages of CHD Families: Physical Touch

I had to wait an entire day before I was able to hold my daughter for the first time and it felt like eternity. Unfortunately I had severe preeclampsia and was on a magnesium drip for the twenty- four hours following the emergency c- section of my heart warrior. Normally this wouldn’t be a big deal because they would just bring the baby to you as you sat in the recovery room with the IV. That is, unless your baby was whisked off immediately after delivery and taken to the cardiovascular ICU for intervention. I asked my husband to stay with my daughter and I went back to recovery by myself. All I wanted was to hold my little girl.

As many heart parents know, some days you aren’t able to hold your child. They might be on a ventilator, have an ART line, have recently come out of surgery, are too sedated, and a slew of other reasons. Luckily my daughter was fairly stable for the first couple days so I was able to hold her; I know many parents who didn’t even have that much. Sometimes it would take two or three nurses to help navigate the multiple IV poles and multiple pumps. The first time I held my daughter I was afraid and nervous. One wrong move and it might pull on a line. But we spent hours holding our sweet baby; hours, and hours, and hours. Because sometimes that’s all you could do. We did our best to get our daughter to the No. 1 pediatric cardiology hospital, but much of our time was spent with the “wait and see” mentality. It was hard. So hard. And all we could do was hold our baby and make sure she knew how much she was loved. When we had days, or even weeks that we couldn’t hold her, we held her tiny little hand or embraced her little bitty foot. We couldn’t snuggle her or put her in a baby wrap. We couldn’t really bathe or feed her. That small amount of physical touch was all we had.

Parents are well-aware of the nurturing that can be done while holding your baby. There’s advice out there encouraging “skin-to-skin” or “kangaroo care”, but what if you couldn’t hold your baby that way? What if you couldn’t even hold your baby at all? I think this is one of the hardest things to go through as a heart parent. Even as they get older, or bigger, or stronger, you just want to hold them and tell them it will be alright.

The 5 Love Languages of CHD Families: Gifts

CHD Love Languages - GIfts

The 5 Love Languages of CHD: Gifts

Many people show their love through gift-giving and giving gifts to heart families is no exception. Countless meals and gift cards are distributed and fundraiser pages are shared. We’re so lucky to be in a community where even strangers are lifting you up. CHD families, especially parents, feel showered with gifts.

The gifts we would like to talk about are the kind that fill your heart with complete joy and appreciation in ways that physical gifts cannot.

The gift of hearing your heart warrior giggle for the first time.  I heard from a sibling that the sound of your baby giggling was one of the most wonderful sounds you would ever hear. There is such emptiness that comes with the feeling that you might never hear the sweet giggle of your child — the child you have fought so hard to keep alive. What a gift! What a gift it is to hear those heart-melting sounds for the first time.

The gift of medical advancements. In the last couple decades there have been immeasurable developments in congenital heart disease. There are too many to name, but one in particular hits home for us. As if from a scene from Star Trek, a parent can now use an app on their phone to send information to a cardiologist about their heart warrior’s pacemaker. What an amazing gift we have with science and technology!

The gift of seeing your kid free from tubes and wires. I’m not sure if this memory sticks out for any other heart parents, but remember when you were nearing discharge and finally held your baby naked with NO wires or monitors? The kind of naked where you can hold them to your chest without wondering how much slack you have or if you’ll accidentally pull at an IV. You inch toward the hospital room door just because you can. They are covered in bruises and stickiness from leads, stitches, and IVs. I don’t know about you, but I gave a sweet gentle kiss to THAT scar. A scar I will always view as a victory and a reminder of the underestimated strength of our warriors. This is a true gift indeed.

The gift of unexpected friendship: When your child is first diagnosed it can feel so lonely. Down the road you feel so appreciative for the families you have met that can understand exactly what you are going though. Like “star crossed mothers” we meet on a path that seems meant to be. Not only a friendship for us as parents, but for our children that have each other to lean on as well. Their unforeseen friendship means they have someone to help them fight their battles side by side. An oddly unwanted yet grateful gift of friendship for your child.

The 5 Love Languages of CHD Families: Acts of Service

Acts of Service

The 5 Love Languages of CHD Families: Acts of Service

When a family member or friend receives a diagnosis that their child will be born with a heart defect, you may not know what to do. It’s easy to retreat because it might be uncomfortable, but sometimes it’s even more uncomfortable for us to ask for help. Here’s a list with some suggestions:

1. Offer to help take care of household things while they’re in the hospital with their warrior. Hospital stays can be lengthy and it’s overwhelming to think about childcare for the other children, pet sitting, or general house upkeep. Some families are lucky to have a network of people, but others might not have any support at all.

2. Help run errands. This doesn’t seem like it’s a big one, and you may be overwhelmed with your own errands, but consider this: some kids need to be in quarantine while awaiting surgery/recovering from surgery/are seriously immune-compromised, and parents can’t take them out in public. This isn’t just for days — it could be months, especially during flu season. It’s hard for heart parents to get out. Not to mention, many hearts kids have oxygen tanks or special strollers that are cumbersome. Likewise, with long hospital stays, you are basically living there and it’s hard to run out for an errand. A heart parent might desperately need some ibuprofen, but can’t muster the strength to leave their unstable warrior that day.

3. Visit us in the hospital. Many times our warrior might be immune-compromised and most hospitals have visiting restrictions in the ICU, but parents might need an outlet. Please know that we can’t commit to a long visit, but stop by and take a 15-minute walk around the block with us. We’ll be anxious to leave our warrior, but it would be nice to see a smile. (And right before you come, shoot us a quick text and ask if there’s anything we can bring. It could be a box of tampons or a couple breakfast tacos, but we will be ever so grateful.)  BIG NOTE: WE LOVE YOU DEARLY, BUT PLEASE DON’T SHOW UP UNEXPECTEDLY. There are days we just won’t feel up for a visit. Hospital life is rough and please don’t be offended.

4. Help organize an event to celebrate our heart warrior.  If our baby is diagnosed prenatally, maybe it could be a small baby shower or photo shoot. One of the most meaningful things our friends did was throw a big celebration for Eloise once her big second surgery was over. These kids are fighters and they deserve so much celebration.

5. Volunteer locally at the Ronald McDonald House or volunteer with heart organizations. Call your closest Ronald McDonald house and ask if you can provide a meal for families every once in a while. Get involved with local programs who help these families and kids. Talk to the social workers/community outreach at your local hospitals and ask how you can directly help.

Thank you for loving us and taking sweet care of our families. An act of service will never go unappreciated. It means more to us than you’ll ever know.

 

To wrap all these thoughts up about acts of kindness, here’s a story from Patty about her sweet friends:

While sitting in our apartment alone for the first time with my heart warrior, I began a text conversation with my girlfriends. We had moved to Houston for our daughter’s care and I desperately missed my Austin family. They were at a gathering together for a celebration — one of the many I have missed. I sent a simple four word text: “I am so lonely.” It was late in the evening and we were hours apart, but I will always be grateful for the response: “We are on our way.” Within a few hours and in the middle of the night, my friends came to rescue me. This was an act of love I’d never expect to see from friends during that time. In this case it’s extreme, but I consider myself very lucky to have loyal friends crazy enough to have done that.

Has someone done something for your family or heart warrior that will stay with you forever?

The 5 Love Languages of CHD Families: Words of Affirmation

CHD Love Languages - Words of Affirmation

The Five Love Languages of CHD Families: Words of Affirmation

Families dealing with a CHD diagnosis need to hear words that support and encourage them through their journey. So much love can be given through words. It’s understandable that finding those words can be difficult when the situation is almost impossible to relate to. So here is what happens: You might say, “I’m sure everything will be fine.” or “Everything happens for a reason.” Even though intentions are good, it isn’t what we want to hear. Honestly hearing the words “That f****** sucks” seems to be more comforting because it shows pure honesty. It seems counter intuitive in terms of wanting to be supportive, but those of us that have been through this journey crave that kind of honesty. We already know we need to stay positive. We already know we need to pray (if we’re the praying sort). We already know that you know someone else who knows a person, who knows another person, who has a friend who has gone through the same thing. But it’s not the same, it’s just not.

Keep calling and sending those texts. Please know that even if we’re too overwhelmed or unable to respond to a text or call, it means so much to us that you’re thinking about our family. Sometimes with long-term hospital stays, we are so emotionally and physically drained that days fly by and we haven’t responded. Caring for a child with CHD — in or out of the hospital — can take every ounce of energy, and sometimes it’s just hard to respond.

If you can’t think of anything to say because nothing sounds right, remember that the reminder that you are loved is always nice to hear. “You and your family are so loved” can have just as much impact as a literal embrace.

 

 

CHD Awareness Week

Congenital Heart Defect Awareness week starts TODAY! Besides learning about the staggering number of babies born each year with a CHD (40,000. Forty THOUSAND!!), it’s important to have a little insight about what these families go through and how to support them. We also need this awareness to increase research funding to help these sweet children. They may be fixed temporarily, but they will NEVER be cured; this is a life-long struggle. This awareness may not mean much to you personally, but every day there are kids fighting for their lives. These kids are your neighbors. They are your friends’ children. They are kids in school with your children. Nieces. Nephews. Brothers. Sisters. Grandchildren. Unless a cause directly affects you, why does it stay on the back burner? Currently there are MILLIONS of heart warriors; for them there isn’t a back burner, it’s everyday life. Awareness starts NOW. How can you help?
In honor of CHD week and February as a month of love, we offer up THE FIVE LOVE LANGUAGES OF CHD. Each day this week, starting tomorrow, we will reflect on a new topic and how it relates to the world of congenital heart defects.

5 Love Languages of CHD

The Dell Deliberation

Quick background: Addie had her Norwood and Glenn at Texas Children’s Hospital and recently had her Fontan at Dell Children’s in Austin.

The Dell Deliberation:

The news that Addie’s surgeon, Dr. Carlos Mery, would be moving from Texas Children’s Hospital to Dell Children’s in Austin was initially exciting, then it immediately turned to worry. How could we leave TCH? How could we ignore all that we had read about Dell on social media? This is what most of the heart parents are contemplating right now. Follow the surgeon, or stay with the hospital? In our case we had two major factors: 1) We didn’t have much time to figure it out or watch the program grow. Addie needed surgery soon and the decision needed to be made. 2) We live in Austin and this was the tricky one. I loved that these amazing surgeons were coming to our hometown, but we needed to make the decision without that in mind. If Dr. Mery had gone to Dallas, would we follow him there? In the end, we based our decision on what we knew about Dr. Mery. He’s no risk-taker when it comes to his patients; we love him for that. During the rise of his career we figured he wouldn’t go anywhere that he felt would jeopardize the health of his patients. When it comes to your child these decisions are so hard to make.

That’s why I’m writing this post. For all the parents out there worrying about moving care to Dell, to the parents in central Texas just starting this journey and wondering where to go for surgery, and to all the TCH-ers with simple curiosity: Here is our Dell experience.

“You may all go to hell and I will go to Texas Dell”

I have to admit, during Addie’s first two surgeries I slept through them, aside from the updates. I think I was overwhelmingly exhausted. The Fontan was different; Dell was different. I wasn’t sure what to expect and I walked, paced I should say, ALL DAY. I could barely stand by the time we saw her. From 7:45AM to 9:00PM I walked. I will say most of that day is blurry, but we did have a ray of sunshine throughout the day. Alyssa, Addie’s child life specialist would pop in to check on us and see how we were doing. We spent over 3 months collectively at TCH and I can’t name one CLS that we had. That’s not a diss to TCH, but a praise to Dell’s focus on well-rounded care. Any heart family who has been at Dell would know how amazing she is! Most of the day we had the family room to ourselves and I walked out to the healing garden periodically to clear my mind. My nerves were put at ease once we talked to Dr. Mery. I could see how happy he was with the repair. It was different then the other post-surgery talks. He almost seemed pumped up about it and that gave us the relieved feeling we had been waiting for. Overall it was a similar dreadful day as they tend to be, but the welcoming feel from the staff and hospital left me feeling we had made the right decision with Dell.

Austin is Weird and Dell is Different

The child life specialist was just the cherry on top of the personal care we had at Dell. Aside from the three standard surgical, morning, and evening rounds, we had plenty of opportunity to speak with the surgeons or CVICU team because we saw them regularly throughout the day. We got the same amazing team at Dell with a fraction of volume of patients. The continuity of the CVICU team was amazing, and the continuity of the nursing staff was honestly surprising. The same nurses cycled through in our 27 day stay in the CVICU and IMC many times. They weren’t Addie’s nurse over and over, but we had nurses we loved that were never even assigned to her! I felt at ease with the nurses. Maybe it was that I was in my hometown, but I felt familiar with them. Austin is weird and Dell is different. There is no doubt Dell can give that kind of personal touch that TCH is too big to offer. I can only hope that Dell will do it’s best to hold onto that, especially with how many nurses they have circulating through the CVICU. To all the CVICU intensivists, PAs and NPs, thank you for listening to us and giving us a voice in Addie’s care. We know we have the right to decide the course, but we felt we were part of the conversation and that meant a great deal to us.

Austin is weird, but it’s also green. The outdoor courtyards and gardens are hard to miss at Dell. If you are just starting this journey and thinking it’s easy to escape to the hospital air flow– it’s not. At TCH it was my goal to step out in the fresh concrete jungle air once or twice a week, but at Dell I could walk down the hall, and step outside for a few minutes to take a breath. I didn’t think I would ever have ducks as friends, but there are two ducks in the healing garden that make perfect walking buddies. They hobbled along and kindly listened to me contemplate how the hell I ended up in the prime of my life talking to animals about my child’s GI problems.    

With Great Change Comes Great Responsibility.

Dell is new to complex heart surgeries, but the surgeons are not. The whole point about going to a high-volume hospital is because the surgeons have the experience they need to do your child’s surgery — remember that. The nurses at Dell have a lot to learn about CHD children — remember that too. If there are any Dell CVICU nurses reading this, all of you were so wonderful. When I say that there is a lot learn it is in no way a comment on Addie’s care. I just mean CHD patients are not like others and every single one is different. All the changes to the heart program are for the benefit of the patients. Every small and seemingly insignificant change Dr. Fraser has required for the CVICU is made with dutiful care. Change is hard and I could sense the tension for some of you.   

Saying that, I obviously sensed push-back from SOME of the nursing staff about a “new team” with “new policies.” That “team” that you speak of with parents, that’s the team that saved their kid’s life. Don’t forget where the loyalty stands on part of the parents.

I want to make it clear that I don’t believe that had any effect on Addie’s care. It was just something I wanted to note because it was obvious. I want to thank all the nurses for loving Addie and going above and beyond of her. I’m sorry you had to hear her say the word ‘agua!” 500 times a day! I wanted to make a special shout out list, but it got too long. So many of you will have a special place in our hearts forever.

Haters Gonna Hate

There is a lot of negative talk about Dell on Facebook. I am not doubting that parents have had bad experiences at Dell in the past, and no program is perfect; I’m sure bad experiences may still occur from time to time. Dr. Fraser is working hard to make the changes necessary to unleash Dell’s potential. I would think that the heart program looks much different now than it did 6 months ago. So if you are a parent thinking about choosing Dell, I recommend to only look at information from the past few months.

The Dell Deliverance

Surgery time is so stressful and you can never really “enjoy your stay,” but we felt like family at Dell. So cliche, I know! But it’s the truth! The point I want to make is that Dell blew us away with the care they provided for Addie. I want parents out there to know that they can feel comfortable taking their kids here and that they might have a better experience at Dell then they did anywhere else. No heart program out there is perfect, but we found Dell to be a well on its way to the top.

Our experience in pictures:

A few days post surgery.
few days after

Visit from Rosie the therapy dog.
dog

Walking with the ducks.
ducks

Walking around the healing garden.
walks

Walking down the CVICU pointing out all the nurses water bottles.
icu walks

Watching movies on the play mat-turned futon.
futon

Getting ready for discharge.
getting ready for discharge

Edited by: Elsbeth Deleon