Grace and Goodness

Our precious Gabriella has been thriving the past couple of months, but the time has come and we currently are anxiously awaiting our next big trip to Colorado. Gabby is scheduled to have her second open heart surgery on August 11th called “The Glenn”. Recently, Corey said to me, “Can you imagine if we were still in Denver like they wanted?” Honestly…No I cannot. Spending the past two months at home has been a blessing and gift we certainly do not take for granted.

This summer: Gabby was baptized at our home church, she made it to her big sisters dance recital, she was able to attend three weddings of couples very near and dear to our hearts, she celebrated her first 4th of July on the ranch and survived her first weekend solo with Dad while I was spoiled on a Taylor Swift girls trip for my 30th, she witnessed her big sister (Daisy) and pretty cool big cousins (Kora & Gemma) learning how to ride their bikes, she took her first dip in Grandma Babe’s swimming pool. Gabby was visited by and snuggled in our home by all of her living grandparents. She made strides eating and increased her bottle intake for a record amount of 70 ml during a few feedings which is considerably more compared to her first days at home. These were obviously the “big” moments, but the “simple” days where we found our stride centered around her routine of feeds and medication have been treasured as well.

We brought Gabby home from Colorado early June after an unexpected hospital admission that required an emergency stent placement in her shunt. We hosted a Run in honor of Gabby and a fellow heart warrior friend Banks and also honored the other Yellowstone County heart warriors at my grandparents ranch. The day was nothing short of beautiful and overwhelming in the best way possible. Gabby’s journey has reached more people than I would have ever dreamed of. There are defining moments in our life that we can all look back on and remember the weather of the day, what we wore, what we had for breakfast that morning, but most of all we remember the feeling. My heart on June, 11th…It was full, I will never forget that feeling of immense joy, gratitude, and sweet sadness from reflecting on what we were celebrating that day. It was honestly one of the most humbling days of my life. Spreading awareness for CHD and seeing all the other kids there that day battling their own fights, hit home for me. The days that followed her Run are when all the emotions and pent up feelings of the past months had finally really hit me.

Below is a journal entry from June 16th, that I think is an important reminder as to how far Gabby has come this summer.

June 16th

It’s hard to believe we have been blessed with Gabby for three months. My heart has felt a different weight this past week that I knew would eventually come to a head. It’s a strange phenomenon to know you're living in survival mode..

For some reason the past few weeks have felt harder than any before. Maybe it’s starting to sink in that what we are doing isn’t normal and frankly I’m just a little tired. Somedays I feel like I’m having an out of body experience, “is this really happening?” Gabby’s hospital readmission the day she turned 3 months old brought up some pent up feelings. Instead of journaling about the normal three month milestones I found myself writing about how she spent five days in the hospital and two of which were in the CICU. 5 days is very short, but handing Gabby over to the surgery team for the third time doesn’t get easier. Each time it increasingly pangs the heart strings more..the more days we spend with Gabby the more we fall in love with the little person she is becoming. I try not to look too far ahead, but it’s impossible not to imagine a life without her in it.

Then the dreadful pessimism of doubt creeps in. Doubt about..did I spot check her oxygen saturations enough. Did she go too long without oxygen? Is this going to affect her learning abilities later in life? Am I doing enough to increase her oral eating skills? Why didn’t I make it a priority to see a different feeding therapist sooner..will she be behind on speech because her oral eating skills are not up to speed?

The little brown oxygen stickers on her face and toting around her tank have been a harsh reminder lately that her health is very serious and we can’t sugar coat it. Then today at her appointment her cardiologist told me,” the goal is to get Gabby to kindergarten.” I sat there kinda taken aback and let his words sink in while I stared glossy eyed at our little girl. Is it going to matter how we get her there? Is it really going to matter if she never drinks a bottle fully but eventually figures out how to eat? No it’s not. Too many variables are simply out of our control, whatever route we take to meet the goal will be the one necessary.

Corey asked her cardiologist why she would be sweating so much lately. His answer was “it’s the body’s natural response to lack of blood flow, also meaning you have heart failure.” As a parent, to hear in a somewhat casual manner that your baby has heart failure is a gut punch like no other. It’s those moments of harsh reality I wish so badly I could take all of this away for Gabby.

My chest is heavy. It’s heavy for the pain and discomfort I wish I could shield our baby from. It’s heavy from knowing she got poked with a needle at least 7 times last week. It’s heavy for every day when her eyes water and she holds her breath-turns purple so she can spit up a good portion of her food after a tube feed. It’s heavy for her big sisters who unfairly have had to grow up and sacrifice a delicate stage in their childhood and have PTSD when mom and dad leave them because they’re smart and know this is kinda all scary too.

Someone said to me recently, “she won’t remember this thank goodness.” No thank God she won’t…I do fear her body might hold on to the trauma and sadly I know I will never forget. Here’s all I do know, like my Dad always says, “Tomorrow will be a new day the sun will still shine.” I need to start focusing more on the good, I will look forward to my morning smiles from Gabby. I’ll hand her off to Daisy while I get her feed started and wait for Dellas morning orders that I know one day I’ll miss. I’ll check my Garden, come back inside and tackle the day.

Re-reading those words now, I can’t help but be so proud of how far Gabby has come. This summer has been a challenging, emotional rollercoaster for a multitude of other reasons, but as I sat back today to write and reflect I found myself mostly marveling at the “good stuff". I think it’s easy to get caught up in the “hard”. I have been guilty of finding myself preoccupied and saddened by “what isn’t” instead of being grateful for “what is.” If this past year has taught me anything it’s that there is so much in our life we don’t have control over. God cannot unfold our futures for us to see. We can have faith. God can guard our hearts. Protect us. Give us strength. Provide us peace. He promises to hear us when we pray. Adding Gabby to our family has blessed us with so many valuable lessons and helped grow our hearts and faith in an insurmountable way. It’s opened my heart and changed my thought process. Instead of asking so much “why is this happening to us?” It’s more “ok what is the deeper meaning and message here?”

I started reading a new devotional recently and I thought this next sentence was so beautiful.

“It’s just that we don't want to become so stressed, fearful, and full of anxiety about tomorrow that we miss the grace and goodness of this beautiful day.”

I urge you to go back and read that quote one more time…really let it sink in. As hard as some of our days have been this past year, there really is always a goodness, our daughter's light is a daily reminder of that. It’s ok to feel the hard days too, the balance is not letting them consume you. I know we will have some hard days ahead, but I’m going to keep this quote in my back pocket.

Gabby’s next surgery is referred to as “The Glenn”. Science is pretty amazing, they will redirect the blood flow from her upper body to the lungs. They will remove her shunt placed from the first surgery and take the superior vena cava (which brings blood back from the upper part of the body), disconnect it from the heart and connect it directly to her pulmonary artery. The blood from her head, neck and arms will go directly to the lungs and this will allow the blood to pick up oxygen without passing through the heart. The method behind this procedure is to take extra work away from her right ventricle (as her left side of her heart is pretty non-existent) the right ventricle has to do two jobs of pumping blood to the lungs and to the body. I am not sure how long we will be there, but we are obviously hoping for the best case scenario of about two weeks.

The little victories do add up and the goal has always been to simply “Win The Day.” Though my chest is starting to feel the heaviness as we prepare to embark on this next vital stage I am also feeling a sense of peace knowing this surgery will essentially improve Gabby’s life. My focus over the next few weeks is to find Grace and Goodness in each day. We have been blown away and touched by all the people who have reached out to us and our families to let us know Gabby has made their prayers. We know their power all too well and will be forever thankful and abundantly grateful that her story has spread to so many prayer warriors. Living this journey day in and day out with Gabby, has made Corey and I both tremendously proud to be her parents. Thank you as always for reading this far and following along and sending our sweet girl extra love.

Kayleen