4.23.16

“ALTE”

Apparent Life Threatening Event.

No one said it would be easy.

Let us set the stage– it had been 10 days of blissful ‘normal’ life at home after such a long five month haul in the NICU. We had started our at home therapies and quarantined ourselves to build Jacks immune system up to face the world soon enough. We were happy to be sleepy from mid night feeds rather than from mental and emotional exhaustion a NICU journey provides.

On the 11th day home we fed Jack as we always do, as we always have at the hospital and roughly two hours after the feed, mommy was holding him and heard ‘gulp gulp’ and pulled him off her shoulder and he proceeded to projectile vomit and within a second choked, stop breathing, turned blue and stiff as a board with eyes bulging out. It will haunt us forever. There is something that happens in that moment you watch your baby struggle- you float above your frozen panic and kick into survival mode. For your son, for each other, for every person that has rooted us along this journey and cheered us home. We immediately used our infant CPR knowledge and began back blows while first responders headed our way. We heard the sirens quickly and Jack came to after more back blows once they were on the scene. His color was back and seemed stunned. We needed to bring him into the hospital to make sure he was Ok but the ER was the last place a fresh out the NICU preemie should ever be. We were supposed to be nestled in our little happy bubble! But off we went to the closet hospital to get checked out– they monitored us over night, no more episodes and it was chalked up to a one time choking incident and were to see our Pediatrician the following day.

As we headed back into the house the next day after the hospital stay and Peds appointment we saw the scene we left the night before…dinner about to be made but spoiled on the counter…living room turned upside down in panic mode. As we tip toed back into our normalcy we gave the 5pm feed gingerly. And like clockwork– hours after the feed, vomit- choking- no breathe-no sound- blue baby. Frantic and in disbelief we called 911 yet again to call the first responders back to the home they were at two nights prior. Some of them still on their previous shift. Jack came to again after a couple minutes of heavy back blows. We asked to be taken back to Winthrop (our NICU home) even though it is passed about four other hospitals an ambulance would technically need to take us instead of one of our choosing. But they saw our fear and heard our hearts. We could not have one more life threatening event. We needed to see the Winthrop family we just left. And off we went.

As the ambulance turned into the Winthrop ER parking, the lot we drove into day in and day out for months, we stared blankly in disbelief. How could we be back? How could we not keep him safe at home? How could this be real? Will we ever have a healthy baby?

We headed into our second ER in 48 hours but were quickly whisked into an isolation room to start testing.  They knew us here and it only took one phone call down to the NICU to get all Jacks info and with that call came the family. Within hours the NICU staff knew we were back and came to be by our side when we were admitted up to the Pediatrics floor to check on their boy. It was a Friday night now and as we know from our recent hospital life– the big tests, Specialists and information we needed would come Monday. So we settled in on this new floor and began our endless staring of our baby boy, as if not watching him for one second would allow this to happen again.

Monday arrived and the testing began. We met with Gastrointestinal, Pulmonolgy, and Feeding Specialists. Ironic that two out of the three of these doctors were ones we were not scheduled to follow up with after discharge unless needed. Because feeding was our thing. Was. Blood work was normal, no fever or infection, a sweat test revealed he did not have cystic fibrosis.  After a barium Upper GI and a suck/swallow X-ray scan it was revealed that Jack has been micro aspirating milk into his lungs during his feeds coupled with developing gastro reflux. A perfect storm. They tested different thickness of liquids and it was determined a “honey” consistency (made by thickening each feed with oatmeal) would work best for Jack to help weigh the milk going down his esophagus to stay down where it belongs and when he does reflux there is less of a chance for it to come all the way up. The reason he stopped breathing the times at home was explained to us that swallowing receptors in the pharynx closed up when he refluxed as a defense mechanism. The scary part is that episode could happen again but at least we know how to handle, as scary as it is.

Along with all these findings- Jack was put back on a small amount of Oxygen support due to his lungs taking a beating after the episodes. When they tried to wean him off it was clear his chronic little lungs still needed that help.
We were in the hospital for 8 days monitoring and testing Jack. We then were given the opportunity to take Jack home by the weekend on Oxygen support. Otherwise we could have stayed for weeks or more trying to slowly wean him off this oxygen. We needed to be home, the worst place for us was a hospital full germs and chances to catch them. Mommy needed to leave the hospital room as she refused to leave Jack’s side from the moment they walked in. Sleep and showers were a thing of the past. So we worked with home care services to set up all the portable and home oxygen gear we would need.

On Friday, April 8th, we left Winthrop hospital for a second time. This time with an oxygen tank, pulse oximeter, Zantac prescriptions, oatmeal for thickening and a family of three a little worse for the wear. This week really threw us for a loop, we were blindsided and if someone told us we would be back this soon for a week stay due to reflux feed issues we would have laughed so hard. We had ever other issue possible of a preemie. Feeds were our thing.

Now as we write this entry from the left side of our living room couch looking over at our NASA space station esque living room. The humming of the Oxygen compressor and constant beeping of the over sensitive pulse oximeter are enough to drive us all crazy. We are confined to this one room as we have only 20 feet of nasal cannula length. The weather has been beautiful out to taunt us even more. But after a week long pity party for ourselves- we said enough is enough and grabbed our missile like oxygen tank, beeping pulse oximeter and strapped Jack into his stroller. The stroller that has yet to be used. And off we went, with puppy Frank in tow, like the family we had always wanted to be strolling around our neighborhood – the neighborhood we moved into right before giving birth to Jack and haven’t had the opportunity to explore until now. It was wonderful and stressful and slightly trashy looking but that’s us in a nutshell these days. We are doing wonderfully, we are stressed and we are slightly trashy. And that’s OK. Everyday we don’t step foot back into a hospital is a victory. Day by day we will get Jack weaned slowly back off Oxygen support. Day by day we will sleep a minute more. Day by day we will become the family we know we can be just casually strolling around the neighborhood. Without medical equipment, just coffee.

And to our Jack– it’s us, Mommy and Daddy. Enough with the scares already. We get it, you love hospitals but home is so much sweeter. Trust us. We are done living in survival mode, let’s just be. You have already shown so much growth, progress and strength in our time home. You’re alert, tracking, cooing and smiling at anything in your view. Let’s keep this momentum and take nice deep breaths.