Here’s to 90 Days and Many, Many More!

I’ve shared so much with you guys over the last year from newborn days (both for O+G and Hayes) to some of the sweetest couples.  It’s been no secret 2018 didn’t start simply for our family and I wanted to be open with friends, family and my O+G family about how our lives have been changing. 

While most of the news I’ve shared this year in our personal lives has been on the sad side, I also really want to share in some very real celebration for our little family! 

 

Today marks 90 days healthy since our little Hayes was released from the hospital on Valentine’s Day!  

 Our Easter Egg Hunt 2018

Our Easter Egg Hunt 2018

 

Lots of our friends, family, and clients are probably all, “wait... What do you mean by hospital?” Honestly, at the time we weren’t ready to answer many questions because we didn’t have many ourselves and to be fair, we needed time to absorb too.  To fill you in a bit since I'm not normally one for sharing in the moment, in early February, we had a health scare with our sweet 13 month old, Hayes. She ended up in severe ketoacidosis and was admitted to the WakeMed PICU in critical condition.  This all stemmed from what was a pretty tough GI bug that hit Hayes on Wednesday, then Vance and I a few days later for good measure. 

By that Sunday, our little butterbean was far from herself, refusing to lay anywhere but my chest, refusing all food and drink, whining anytime anyone moved her and panting.  After a visit to the doctor the day before where her breathing, behavior, and unusual coloring was dismissed as "normal" stomach bug symptoms, fatefully, a nurse called us Sunday morning to check on Hayes.  I've never been and may never be more grateful for a single call than the one the pediatric nurse, Jennifer, made that morning.  She trusted her gut of her "feeling not quite right" about hearing Hayes's labored breathing through the phone and quite bluntly, she saved her life.  I'll spare you the extra details but every physician we saw at WakeMed mentioned that Hayes was much sicker than most of the patients they see, all while showing little signs of dehydration.  Her labs sent up red flags on all fronts, and suddenly, we were surrounded with close to 10 nurses, physicians and techs within 10 minutes of arriving, all placing IVs, using LifeFlow guns (which by the way, are insanely impressive), taking urine and blood, monitoring her vitals and eventually prepping her for admission.

 

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Before we knew it, Vance and I were faced with something we never expected to hear: Your daughter needs further testing, this is beyond our scope of expertise. 

It was no longer a matter of severe dehydration, which an hour before, we thought was our biggest problem.  Our world suddenly turned into questions of genetic family histories and rare metabolic diseases with PICU physicians that strictly ordered us to not google any information until we got tests back in a week [and to any mama who can manage that, my hat's off to you].  Normally healthy and giggly Hayes, was seemingly not so healthy, and certainly not so giggly.  We could barely get her to stop crying, much less sleep, over the next 4 days in the hospital.  After her discharge from WakeMed, waiting and finding some more abnormal test results, we walked into UNC's Pediatric Genetics and Metabolism clinic a few weeks later for repeat testing. 

 

We had Finally been given a name to consider: Glutaric Acidemia Type 2, though a diagnosis was dependent on her repeat test results.  GA2, or MADD, is a disorder that affects the way individuals process proteins, which can cause death in the first few months of life in the more severe cases, and can result in physical abnormalities and in later-presenting cases, often presents with a life-threatening metabolic crisis.

Thankfully for us, Hayes was Finally given the all clear in March, nearly a month after this journey began.

 

 Hayes on the day she was released!

Hayes on the day she was released!

Can I share something with you? Sorry, no stopping now!  Most of you that know me know I'm a researcher.  It's the planner in me--  I need to know how to plan for the good, the bad, the ugly.  And let me tell you, this is no different for me as a mom.  But how do you plan for something that only exists in so few patients, most physicians don't even know the name of the disorder?  I'm sad to say that this was the limbo our hearts were in for that month of unknowing.  And I know our story ends beautifully [even regardless of what that test said, though by the grace of God, I'm by no means saying its not a result worth a happy dance], though not all families have that relieving moment.  Because of this, I have to add a little caveat to our celebration, please pray for these families and children.  God knows the struggle on their hearts and their children's bodies; plus, the feeling of dealing your child a bad hand, no matter how silly it may sound, is a very real one. 

 

And hence the reason for our celebration today, with 90 days of a healthy baby girl (and even overcoming another GI bug, hospital-free in the interim)!

 

If you've made it this far, God bless you for sitting down to let me share our story with you and throw up some praise hand emojis with me.  I can't thank you all enough -- our seriously amazing friends, families, and clients who may or may not have known our situation at the time but by God, you sure did some good for this lady's heart whether by distraction or loving on us and our girl.

 


 

Here are a few resources I found helpful if you want to learn more about GA2 and other metabolic disorders:

March of Dimes

Genetics Home Reference