No Guarantees

This week was tough.

Garrin’s CO2 level on Monday was no better than it had been prior to the tracheostomy. In fact, it was worse than some of the results we had seen with CPAP and nasal RAM cannula. In addition to the lousy blood gas, my sweet boy was working harder to breathe and having increased oxygen needs.

At rounds, comments were made that Garrin was not making progress as fast as anticipated. The one positive from the conversation was the decision to assess Garrin to see if he could return to oral feedings.  I was thrilled, thinking that he’d be eating later that day – I mean he had been taking bottles for months before we were admitted to Children’s back in February. Unfortunately, the feeding assessment did not go well.  The placement of the trach tube has affected Garrin’s oral sensations, and he is not managing his secretions well enough to be able to start eating by mouth yet. 

With increased CO2, higher oxygen needs, more labored breathing, no vocalizations, and no oral feeds, I was crying in the NNP’s arms, questioning our decision to put him through all these surgical procedures.  As we visited she mentioned that she has seen it take months for kiddos to settle out on their hospital vent settings and successfully transition to the home vent. 

With that, the wind was taken completely out of my sails. 

I hate to be so focused on the time frame of Garrin meeting certain milestones and eventually coming home. Of course, I only want him to be released when he is stable and ready, but he has been hospitalized for more than 200 days, and each day, it gets increasingly difficult to keep my spirits up when setbacks arise. These setbacks are even harder on the days I can’t be there in-person to see the changes in his condition. Thankfully, Garrin’s breathing improved significantly by midweek, making it a lot easier for me to be at home.

When I got back to the house after work, my eight year old daughter rushed to tell me about the lemonade stand that she had planned for the next day. She had signs, a checklist, a sales pitch, the supplies, and more ready to go, and she decided that she wanted to donate the money that she made to her baby brother. Cue the waterworks.

Thinking that she probably wouldn’t see much traffic, I posted a message in our local Facebook exchange group, hoping to recruit a few neighbors and friends to stop by her stand. I was blown away when the post was liked and/or shared more than 1,000 times. The support for Lucy’s lemonade stand and for baby Garrin was more than we could have ever expected.  Our hearts are so touched by the love and compassion that was shown to our family, and my spirits were certainly lifted.

Since Garrin’s birth, we have been showered with love and support from friends and family as well as people who only know us by name. I have had the opportunity to connect with people from all over the world who either are going through or have gone through similar experiences with their children. For the last several weeks, I have been following the story of a 17-month-old, ex-23 weeker, who had been hospitalized with a series of respiratory viruses. My heart broke after learning of baby London’s passing tonight.  Her little body just couldn’t fight off the viruses, and the extra strain on her already damaged lungs began to affect her heart. Reading about her last breaths on Earth caused me physical pain. I cannot begin to imagine the heartbreak and devastation that her family is feeling tonight.  Please join me in praying for them.

After Garrin was born, one of the nurses, now an NNP, told us that there really wasn’t a point where they would say that he was out of the woods.  It was tough to hear then, but this memory, in light of London’s passing, is…

The future comes with no promises, friends.  Hug your loved ones a little tighter today.  Every day is a gift.

“Learn to enjoy every minute of your life. Be happy now. Don’t wait for something outside of yourself to make you happy in the future. Think how really precious is the time you have to spend, whether it’s at work or with your family. Every minute should be enjoyed and savored.” ~Earl Nightingale