Baby boy was home for only a week when he stopped breathing on us.
It was the day he turned a month old. A friend had come over to take pictures of him. After she left I looked over at our son in his swing, feeling happy that everything was going so well, when I noticed that something was wrong. He was arching his back and his eyes had rolled back in his head. He was also struggling to breathe and had begun to turn grey.
Without thinking I immediately pulled him out of the swing and put him on the ground. We tapped his foot and shook him, but he still couldn't breathe. So I immediately started CPR while my husband and my in-laws called 911.
Thankfully, after one round of CPR baby boy started breathing again. By the time the local fire department made it to our house, his color had improved, but he was still very listless. After he was checked out and we explained what had happened, the paramedics packed us up into an ambulance and drove us down to Miller's Children's Hospital in Long Beach.
The doctors in the ER ran a bunch of tests - all of which came back normal. I actually think they were on the verge of sending us home when I started to feed our son and something strange happened...
His oxygen levels dropped.
That set off a number of alarms, so suddenly we had several nurses and a couple of the ER doctors in the room asking what had happened. I explained that I had just been giving our son a bottle because it was way past his feeding time and the nurses had said it was okay for us to do that. They had me start to feed him again while they watched, and his oxygen levels dropped a second time. The ER doc told me to stop and explained that our son was aspirating on his formula. They were shocked that the NICU had sent him home like that, and so were we, but by the time he had started bottle feeding in the NICU, he had been off the oxygen monitor for a week.
Come to find out, he was supposed to be on an oxygen monitor when they started bottle feeding him to make sure he wasn't having these issues. And now that we knew this was happening, it explained so much! Our poor baby boy had always looked like he was struggling when he was feeding. He was either gasping for air, or gulping, or coughing, and it took forever for him to finish a bottle. I had pointed these things out to his nurses in the NICU multiple times, but they had always assured me that that was normal and he would get better over time.
The ER doctors quickly decided to admit our son to the PICU, because they couldn't send him home if he was aspirating on his bottles. It was upsetting to see him hooked up to all these machines again, but we didn't want him to come home until the reason behind his problems was discovered and resolved.
It took a couple of days to get some answers.
Occupational Therapy did a swallow study, which showed that normal formula made it halfway down our son's throat before he remembered to swallow. He did much better with thicker liquids, so they had us start adding rice cereal to his formula until it was the consistency of nectar (with the brand of formula he was on, this was two teaspoons of rice cereal per ounce of formula).
Our family was shocked that it was so thick, and my mother in law insisted that he was having problems swallowing it too, but my husband and I noticed an immediate improvement - his oxygen levels were no longer dropping when he ate, he was no longer choking or gulping, and he was finishing his bottles in under 20 minutes.
During our stay in the PICU we also learned that baby boy had severe reflux. In fact, when they did the PH study, they found out that whenever he had reflux, his oxygen levels would drop, because he would stop breathing from the pain. This was probably what I had seen that day in the swing - he had had a severe episode of reflux that led to an apnea episode. They put him on prilosec and a low dose antibiotic to help his stomach empty faster.
We went home two days later and started to adjust to the new normal of giving medicines at routine times, making sure he was always slightly inclined, and carrying around an awkward apnea monitor that had way too many wires and a battery that didn't last nearly as long as it was supposed to.
Then, four days after going home, we were sent back to Miller's Children's Hospital by our pediatrician. During a routine check up, she noticed that our son was breathing faster than normal. An infant is only supposed to breathe between 20 and 60 breaths a minute - baby boy was breathing at least 80 breaths a minute.
He was admitted once more and xrays revealed that his lungs were enlarged, but there was no idea why - he didn't have a virus, and there was no liquid that they could see. Pulmonary specialists told us that it was because he was premature, said that he would grow out of it by his due date, and sent us home with instructions to give him breathing treatments twice a day and prescribed a diuretic for him.
My husband and I were now beyond frustrated. We had known that there was a possibility that our son would end up back in the hospital some day - after all preemies are more susceptible to illnesses - but twice in as many weeks? And it hadn't even been a month since the NICU had sent him home!
The following week we went in for another check up with our pediatrician, and right as I was getting ready to put our son in his car seat, he stopped breathing for a second time. Our doctor began doing rescue breaths, and as soon as he began breathing again, put him on oxygen. The fire department and paramedics showed up, and once more we were packed up into an ambulance and driven down to Miller's Children's Hospital.
The ER doctors gave us the choice of going home or having our son admitted. We chose to have him admitted because obviously there was something going on and we were sick of being told that everything was fine and it was okay to take him home only to be back at the hospital a few days later.
That night we found out that during our second stay at the hospital our son had been diagnosed with Chronic Lung Disease, though no one had ever told us that - not even his pediatrician.
More tests were done, including an EEG to see if maybe he was having seizures, but everything came back normal. Pulmonary continued to insist that his breathing issues were something that he would grow out of, and blame the apnea issues on his reflux. GI decided to up his meds, but pointed out that since his reflux was under control, there was no reason for him to have apnea episodes any more. The regular pediatricians just shrugged and said they had no idea.
It got so bad at one point that Occupational Therapy recommended us for palliative care - not because our son was severely ill, but because it was clear that there were too many cooks in the kitchen, and no one was communicating very well.
Unfortunately, the palliative care nurse didn't think we qualified for palliative care, so we had to muddle through the mess on our own.
And then a few days later our son was discharged, even though we still had no idea what was causing his tachypnea or his apnea episodes. All the doctors would tell us was that 'he was fine here'.
We were beyond frustrated. It felt like they were insinuating that we were doing something to our son to cause his problems - in fact Pulmonary repeatedly brought up my husbands smoking, even though he didn't smoke anywhere near the house, washed his hands and face when he came in the house from smoking, and changed clothes. It also seemed like any time we suggested something that we thought might help - like an air purifier or a humidifier - we were told that it was useless and not to bother, which didn't make sense to us. If there was something in our house that might be causing his issues, like dust, wouldn't a purifier help that?
Thankfully there haven't been any more issues since our son came home from the hospital this last time. We continue to work with GI to treat his reflux, and we go to occupational therapy appointments every week to work on his swallowing issues. Our baby boy is thriving, and has pretty much caught up weight wise with the rest of the babies his age (in fact, he caught up so much so quickly that his GI doctor calls him a chubby monkey).
He still has bouts of tachypnea now and then though, so yesterday they finally agreed to do a CT scan of his chest. Hopefully we will have some answers soon.