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Time is Precious...

I know it’s been awhile since I’ve last written.  A lot has transpired in the last few weeks I hope I can adequately describe how the recent events have yet again shifted our perspective.

I feel the shift happening again, observing my husband and my older two daughters the past few weeks..I can tell they feel it too. I think it's easy to get caught up in the go-go-go of life and powering through each day without stopping to "smell the roses." We have had an eventful month of doctor appointments and hard phone calls that have yet again made us stop in our tracks and relaline what's really important right now. During the evenings lately the TV has been paused, this hasn't been an intentional decision, but one that has naturally taken way. When you're thrust into a scenario in which it's unrealistic to not truly consider your child's days could be numbered, it forces you to live different.

Don't you wish you could take a memory, put it in your pocket and pull it out any given day and live in it's beauty a million times over? As I watch my husband and daughters this past month I have found myself stopping to not only "smell the roses", but take note and revel in every part of the simple, precious moments we have been experiencing as a family of five. The giggles that bounce off the walls of our old farmhouse in the evenings from Corey riling up all the girls are sounds I want imprinted in my brain forever. The way my heart skips a beat and swells watching Gabby be spun around by her Daddy while the music is blaring with her big sisters dancing alongside around the kitchen are memories that will dance in my own mind forever. When you know all too well, one of your daughters could be missing from that scene it's a thought that is to much bear. Focusing on the present moment is the gift that is currently fueling my heart. Time is precious.

We brought Gabby home from Colorado in September and had no plans of returning until her third projected open-heart surgery the Fontan when she was age 2 or 3. In the recent weeks some major concerns about Gabby's right ventricle dysfunction, tricuspid regurgitation, and the return of Chylous effusion have evidence to raise concern for her candidacy to receive the Fontan. Unfortunately her cardiologist here, and her entire team in Denver all agree further testing is needed. Which means we will travel back to Colorado in April for Cardiac MRI, Lymphatic MRI and wait 48 hours to have a Cath procedure done.

When we initially found out about Gabby’s heart condition Hypoplastic Left Heart Syndrome we learned about the three-stage palliation process of surgeries. These surgeries of course are not a cure, but they were the first option we had to extend the longevity of Gabby’s life.  For me, I metaphorically viewed these as three mountains to climb, the first being the hardest and each one easing up (slightly) as we went.  Gabby climbed her first mountain at five days old and recovered from the Norwood (first surgery) and interstage (the time between the 1st and 2nd surgery) with minor setbacks.  The second mountain, the Glenn she was knocked down a few times but continued her pursuit to the top and eventually made her way down ensuing a rocky recovery.  The Chylous Effusion she developed post-op Glenn (fluid leaking from her lymphatic system in a pleural space between her lung and chest wall), the lack of improvement from her right ventricle and tricuspid regurgitation have all made for a worrisome combination that have sparked some jarring conversations with her medical team.     

During November and December Gabby had good reports after her routine weekly checkups.  We were seeing her cardiologist weekly and getting weekly x-rays to be certain the fluid did not re-accumulate on her chest.  We had a shocking checkup right before Christmas and found out her effusion had re-appeared mildly on her left lung.  We had taken such a conservative approach to keep the fluid away by having her on a non-fat diet for 6+ weeks post glenn and slowly weaned her high dose of diuretics. What could have caused the return of fluid?  That week we had switched Gabby to an organic Goat Milk formula that was higher in fat content and decreased her Lasix dose ever so mildly.  She was having so much trouble gaining weight and the effusion had stayed away well over 6 weeks. We felt like we were in the clear.  The combination of those adjustments was just too much for her little body to handle.  

Gabby’s right ventricle function has been a concern since her echocardiogram taken five days after her Glenn (second open heart surgery.)  Her entire recovery after the Glenn was a rollercoaster due to her recurrent Chylous Effusion.  She was put on a heart medication called Sacubitril (Entresto) about a week after her Glenn.  This medication we were extremely hopeful would help improve her right ventricle function. Unfortunately in all of her echo’s since returning home her cardiologist has seen little to no change in her right ventricle.  Now when you add in her tricuspid regurgitation and return of her left effusion it has made Dr. Bigg quite anxious.  

A couple weeks ago I received a call that no heart mom can ever quite prepare herself for. The kind where your greatest fears begin to resurface and the world becomes a little foggy and tear stricken.  Our local cardiologist Dr. Bigg presented his concerns for Gabby’s current prognosis to our team in Colorado which consisted of her head of care cardiologist, her cath doctor, and the transplant team.  After reviewing her case they collectively agreed Gabby’s right ventricle dysfunction, leaky tricuspid valve, and effusion issue do have evidence to raise some profound concern.   I asked Dr. Bigg, “Wait, are you telling me you’re worried Gabby isn’t a good candidate to receive the Fontan?”  This thought hadn’t even crossed my mind, it has always been….stick to the plan, get through the first two surgeries and then we will tackle the Fontan. We have been blindly hopeful her heart meds would kick in and that her dysfunction would improve.  Hearing she may not be a good candidate to receive the last stage surgery of the process means there is only one other option for our sweet girl....Transplant.  I’m not at all saying this isn’t a viable option for her or a good one at that, I just wasn’t prepared to have this option on the table yet.   

As we've had a few weeks to process this information, Corey and I have done our best to comprehend the unknowns that Gabby's future holds. Initially we couldn't but feel a little broken-hearted and slightly defeated. The HLHS journey is a constant game of one step forward, two steps back. You know the steps back are there, but they never fail to knock you off your feet for moment and take the wind out of your sails. For me this past week I have had to surrender my own expectations..again..surrender the thought of how this was all going to go, and really accept that this is out of my control.   We had this idea and plan of what road she was supposed to take and for her transplant was something I selfishly prayed she wouldn't have to face/consider until she reached her 20s or 30s. From a clinical standpoint Gabby appears to be doing so wonderful.  She has developed an even sweeter personality, shows off the cutest giggles and proves she can be an energizer bunny with half a heart rolling like a bowling ball around the room. Each week we watch her in wonderment as she continues to show off new skills.

I often see the numbers 11:11 and think of my best friend's sister as one of Gabby's angels watching over her.  The morning of her cardiologist appointment this last week I read my devotional that encouraged me to look for signs of Hope that day and it reiterated to trust that God is with you…no coincidences… the low temp for the day was -11 and the high was 11. That's all needed, deep breath, sigh of relief, bringing a sense of peace to my body. I recently finished a book about a little boy with HLHS who received a heart transplant and is doing wonderful.  I don’t know why I picked this book up again, but I have to believe it was all part of the plan to wait and read the outcome when I needed it most. I didn’t know how his story was going to unfold about a faithful mother and father enduring the transplant road.  Like the mother of the little boy, I was reminded why so many heart moms share a kindred connection, so many of us cling to Hope to survive the day and push forward.

Currently we are dealing with a lot of unknowns. We still do not know if the Fontan surgery is completely off the table.  We are not sure if the lymphatic issue is causing her heart the dysfunction. Our cardiologist in Colorado has called three times now and confided with Gabby’s surgeon Dr. Jaggers, which has made all of this very real. The MRI and Cath results will be the ultimate indicator of what path she needs to head down (whether it's pursuing the Fontan or if she needs to be listed for transplant.)  It’s been difficult to not feel an extra weight added to our chests, because at this point I’m not sure what we should be advocating for.  I have to trust that the best route for Gabby is going to reveal itself after her in depth tests are taken in Colorado.   I feel whole-heartedly her team has her best interest in mind.  Our local cardiologist makes us feel like Gabby is his only patient; he is the exact doctor we prayed for to take on her care.  We value his opinion and appreciate how he has gone above and beyond researching her case by advocating for her and looping our team in Colorado so early.  I pray as we get her results from the necessary testing it leaves our medical team with cohesive reasoning to push for the same path.   

This talk may be presumptuous, but i've had to look at this from all angles to process it. If transplant is our road, the benefit to listing Gabby this Spring is she could be on the list and wait for a new heart from home with time on her side.  If we wait to list her until she would be officially ruled out for the Fontan in 1-2 years from now it creates a few more what ifs..we don’t know what her heart condition will be a year from now and she could lose a whole year of being on the list. Time is Precious.  They told us right now the wait for a new heart while out-patient is 1+ years.  Research and statistics are not in her favor to receive the Fontan.  Patients who have similar hearts or maybe even slightly stronger right ventricles, majority have not fared well after Fontan procedure.  With the evidence of her lymphatics already being an issue it would be an extremely high risk operation.  On the flip side, if the Fontan didn’t go well for her she could 1. Not make it, 2. Have to wait inpatient for a heart transplant in time-crunch to receive a heart.  . 

The thought of another tiny human losing their life and providing Gabby with the gift of hers is such a complicated, painful emotion to wrap my head around.  I love her little native heart, she has done some mighty powerful things with her three-chambered heart.  In the last weeks as I've held her extra close in my arms, I feel her little beautiful heartbeat thump against my hands. I try to memorize the precious feeling and soak in every beat so I never forget what makes her, her.  I often think of the bible verse “for it was You who created my inward parts; you knit me together in my mother’s womb,.  I will praise You because I have been fearfully and wonderfully made.”  There was a purpose behind why Gabby was created the way she was. We love every part of her and will continue to do so for all the days we live.  

As faithful as I strive to be, I can't help but relay the reality of how these conversations make me feel. Quite frankly, they scare the heck out of me because I’ve read the statistics. The average transplanted heart lasts 10-14 years.  Your body can reject the heart at any moment, 15-20% of recipients do not survive after the first year of operation.  When you are already working against the odds these statistics are not for the weary.  At the end of the day we just want Gabby to be with us, we are prepared to go down whatever path deems necessary. Proverbs 21:30-31 “There is no wisdom, no insight, no plan that can succeed against the Lord.  The horse is made ready for the day of battle, but victory rests with the Lord.”     

If you made it to the end, I thank you for taking the time to read her full update. 

How do we keep surviving these curveballs?…FAITH and sticking together hand in hand. I think it's human nature to have doubts, but when you focus on where He is...and take quiet, mindful moments to feel his presence it's much easier to feel his goodness. As I reflect, I am reminded that Corey and the course of our family's life has changed for the better this past year even as grueling as it’s been.   I know during some dark, lonely moments this past year I’ve questioned..”Why would God do this?” As I’ve worked through those feelings and really opened my heart up I’ve realized He has been there with us all along sprinkling seeds of blessings the entire ride.  One day I will recount all of our God Winks that have brought us peace when we needed it most. “For the Lord is good; his steadfast love endures forever, and his faithfulness to all generations.”

Stop and Smell the Roses friends, life is precious.


Intentional Prayers

It wasn’t until walking this journey that prompted me to start making more Intentional Prayers. I follow an inspiring Heart Mom who often ends her blogs with these intentional prayers, thank you Brynne if you happen to read this!

  Here are a few I have for Gabby in the next coming months.

  • I pray in the next coming months the decision of what path we take for Gabby’s future has clarity.

  • I pray Gabby’s heart can handle her next round of in depth testing and that she wows the doctors with her cardiac MRI and Cath results and leaves her medical with no choice but to push for the Fontan.

  • I pray Gabby's medical team can help guide her/us down a path of success and lack thereof suffering, I pray they feel the strength of You as they make decisions and formulate their opinions.

  • I pray Gabby can continue to live with her native single ventricle heart and that her right ventricle musters up some much needed strength.  

  • I pray that Gabby can become an ideal candidate to receive the Fontan by improving strength in all areas of concern, specifically that her RV dysfunction improves, I pray her  lymphatics heal and I pray her tricuspid regurgitation subsides. 



Hi, thanks for stopping by!

Hey thanks for stopping by! My name is Kayleen, I am fairly new to the heart mom community.  We found out at our 20 week anatomy scan that our baby girl has a severe Congenital Heart Disease called HLHS in October of 2022. 

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