The parting of the storm clouds

This past Sunday, my husband and I had the rare opportunity to get out of the house, sans kids, for a date. With family coming in and out of town over the past few months to help us out, we’ve actually managed to escape kid-free a few times, but, as enjoyable as some one-on-one time with my spouse was, those dates weren’t really relaxing, until this past Sunday. Before this past Sunday’s date, our past few dates were marred by heavy hearts over the struggles of our youngest son during his young five months of life. This past Sunday’s date was different though because the clouds that have darkened our lives since a few weeks before his birth have finally lifted.

On the sixth of this month, my littlest guy celebrated his five month birthday by leaving the hospital with no plans of returning. After struggling to live, breath, and eat from the time before he was even born and through his entire little life, my son is finally able to invest his energy in more age appropriate activities, like discovering his hands and feet. Only a little more than two weeks ago we were sitting in the hospital again with my littlest guy, facing a calendar full of surgeries and hospitalizations through at least the end of the year and even the possibility of a permanent trachea tube. Today, we are home, enjoying all of life’s small moments of happiness and feeling blessed.

Our littlest guy struggled through a respiratory virus, with the assistance of steroids and some extra oxygen, and was healthy enough to go under general anesthesia for a more comprehensive scope of his airway last Monday. My husband met me at the hospital the morning of the procedure and we sat together with our littlest guy, comforting him as they prepped him for the procedure, trying to prepare ourselves for what we were about to find out and what the future held for our son. The doctor promised that the procedure would only take minutes to get in and evaluate his airway, then we would be told how they would proceed to attempt to fix the problem. We were prepping for a long tough road. We waited nervously in the waiting room ,for what seemed like hours instead of minutes ,for the call. When the OR nurse called, I spoke with her on the phone as my husband and I held hands. Soon tears streamed from my eyes as I felt the oppressive storm clouds that had been hanging around me for so many months finally part and I could breath again. There was a minute chance that when the doctors got in to get a better look at my son’s airway, instead of scar tissue, it would be a cyst. The chances were so small that they didn’t even mention the possibility the first time we saw the ENT doctor. If this was the case, they would be able to pop the cyst and clean out the airway with minimal work being done and little recovery needed, it was the absolute best case scenario, though highly unlikely. We had so many people pulling for us and praying that it must have worked because the nurse said those words we were not prepared for, “it is just a cyst”! We were overjoyed! I couldn’t stop crying from relief, excitement, disbelief, and happiness. My little guy was not going to need the multiple procedures and surgeries we were mentally preparing ourselves for; he wasn’t going to spend his entire first year in and out of the hospital! We couldn’t have asked for a better outcome. When we talked to the ENT doctor, he expressed how excited and surprised he was to find just a cyst; it was so unlikely. He was so excited that he told the nurse to call us immediately with the good news. All the nurses and doctors on my son’s medical team were so happy and even better, they were in shock by how great my son was doing as soon as he woke up in the ICU. When I first entered his ICU room, my son was sleeping. He was so quiet, unlike his normal, loud, labored breathing, I had to check for myself to make sure he was still breathing, despite all the machines he was hooked up to telling me he was fine. When my son woke up, it was like he was a totally different kid. He went from eating 40-65mls of milk over the course of a half hour to downing 70-100mls of milk in 10 minutes! His breathing was quiet, not labored. This gave him extra energy to discover his tongue, talk more, exercise his arms and legs, and just be more, overall happy and alert. He seemed ready to go home within hours of the surgery and the ICU staff said they would’ve discharged him from there if they could’ve, but ENT made us spend a night in ICU. Once we moved to a room on a regular floor, my son kept setting off all the machines by being so active that his sensors kept coming off, so nurses relieved him of wire after wire relatively quickly. We were able to convince the doctors to only keep us one more night after leaving the ICU.

So, to celebrate his five month birthday, my son left the hospital (again) able to breath and without a feeding tube! He is home and happy and doing the things a five month old (3 month adjusted) should be doing. At his last doctor’s appointment he had gained 1pound, 1oz since she had seen him a month earlier, not bad considering he had lost some weight when he first went into the hospital. At last check he was a hefty 9lbs 8oz.

In the coming weeks my littlest guy will still need to do some follow up visits. He is done with OT, but still needs to see the nutritionist. We are hoping that she will allow us to send back all his feeding tube equipment by the end of the month and that he will come off the fortified breast milk and be able to eat just regular breast milk within the next two months. He goes back to see the ENT doctors in a few weeks and in the middle of next month, he with go under general anesthesia again for another look, to make sure the cyst has not returned. If there is no sign of regrowth, he is home free! Despite those follow ups, I feel like this is finally, truly over.

I now find myself enjoying an ease that I have not felt for a very long time. I have been able to stop holding my breath and don’t have that constant worry at the back of my mind. I find myself fully enjoying the moments in life, big and small. My favorite moments right now, are the ones in which I am able to watch my three older boys playing while holding my wiggling, giggling littlest guy. The storm clouds have finally parted and I am enjoying the sunshine in the form of a toothless, drooling smile.

The before and after picture of my son’s airway. He was basically breathing through a straw sized hole that went even further back than the picture shows.