39 days old

What a week. Sean and I are utterly exhausted, but not for the reasons you'd think. We settled in nicely to having Lilah at home, taking turns with her night feedings and adjusting to having her around. For the most part, she eats and then falls asleep quietly until her next feeding - Sean even looked up at one point and said, "You know, for a while there I forgot we had a baby here!"

On Tuesday I took the afternoon off from visiting the hospital and Sean went to see Charlotte instead. It was the first time in almost 3 months that I hadn't been at UWMC! I stayed behind and relaxed with Lilah and gave her a wonderful bath. When Sean got home, we had some dinner laid down on the couch with Charlotte in the crook of my arm holding Sean's finger in one of her tiny hands.

She started to stir a bit because it was time for her next feeding when suddenly she gave a small cough, got wide-eyed and stopped breathing. Her arms stuck straight out and her whole body was rigid from head to toe and she almost immediately started turning blue. We both watched her for a few moments, thinking that at any second she'd catch herself and start breathing again, but she didn't. As she continued to turn color, I rolled her on her side in case her airway was blocked and patted her on the back. Nothing. Sean grabbed her and put her face down in the "recovery" position and patted as well. Nothing. Now she was turning grey-blue and was still stiff as a board, wide-eyed and still. I went to give her mouth to mouth but realized we still weren't sure if her airway was clear. It had been about 30 seconds, but seemed like forever, when Lilah finally took a single breath, gave a huge cry, and stiffened and stopped breathing yet again. She was so stiff that Sean didn't even need to support her head since it seemed to be locked in place. She did this another 4 times and meanwhile Sean said, "call 911", so I grabbed my phone and called, ran down the hallway and grabbed the bulb suctioner. I was giving information to the dispatcher and trying to suck out anything in her throat, but came up with nothing. After 5 minutes, the ambulance pulled up and Lilah had started breathing again on her own and her color had started coming back. She was crying on Sean's shoulder when the medics came up. Since she had recovered, they gave us the option of driving her to the hospital ourselves (I think this was the smallest patient they'd ever had and it made them nervous) so we packed her up and hit the road.

(Apparently when you or I hold our breath, we have reserves and can wait for quite some time before breathing again, but infants don't have those reserves and stopping breathing immediately creates a reaction like the one we saw.)

I sat in the back seat with her, watching to make sure she kept breathing along the way, and we headed to Group Health 24 hour urgent care at Overlake. They checked her out and then arranged to transfer her to Children's Hospital for observation. I got in the ambulance and Sean went home to get a few things (I needed the breast pump gear and Lilah had pooped on my sweatshirt and herself) and let the dog out, and then met us at Children's. We spent some time in the ER being evaluated - she had her vital signs taken several times, which irritated her to no end since it meant undressing her each time - and then they moved us to a room upstairs.

It took another hour or so to get situated in that room, shared with another family with a baby, because of the molasses pace of the nurse. When we finally got a 40 year-old cot and a broken reclining chair brought in to sleep on, it was 4 am and we were nearly numb from exhaustion. I slept for an hour or so until Lilah woke up making noises in anticipation of being fed. We spent the next several hours talking to doctors and waiting for word on what would happen next.

The doctors theorized that Lilah has reflux and her airway shut down to protect itself from something she may have coughed up. I'm not sure I'm entirely confident about that diagnosis since the result was so extreme and she had never exhibited any symptoms while in the NICU, but they sent us home with an acid blocker medication and a foam wedge for her to sleep on so she wouldn't be flat on her back. When reflux occurs, it weakens the esophagus, which makes more reflux likely, so this will hopefully stop the cycle. We asked if something we did made her start breathing again or if she would have come back on her own and the answer wasn't very definitive. The doctor said it was hard to say but that she had never heard of a baby dying from reflux. Reassuring?

We got home around 4 in the afternoon and I slept for about an hour before needing to feed Lilah and start our daily schedule all over again. Sean had to work yesterday and had nearly no chance to catch up on the sleep he lost either, so between the two of us we're completely wiped out.

Lilah has been completely normal ever since and shown no signs of any other problems, but we still are apprehensive about leaving her in another room unsupervised. All of the "what ifs" run through my head and I just want to hold her in my arms and make sure she's safe. No one should ever see their baby that color or have to worry about her breathing. It was incredibly scary.