Back in the hospital again...and this time it's SERIOUS

I'm running on no sleep, more tears than I've ever cried, and more anxiety, fear, and anger than I've ever had...so pardon me if this particular entry is hard to follow or is just very abrupt.

Tuesday afternoon Emma started having a hard time taking a deep breath and didn't have enough breath to cry. She wasn't taking a bottle very well, and when she exhaled, she wheezed/whistled. We took her to the pediatrician at 6:00 (the only pediatrican in town open until 7), and they gave her a breathing treatment and told us to go straight to the hospital. We got to the pediatric floor of the hospital sooner than they expected us. Emma's room was clean but wasn't totally ready, so we sat in there while they got it ready. I was feeding Emma her bottle when her eyes rolled back in her head, and she turned blue in an instant. And I mean INSTANTLY. She stopped breathing and was completely limp. Luckily, nurses were in there, and we yelled for help. Of course, we all thought she was choking. One of the pediatric ICU (PICU) nurses just happened to be on the pediatric floor because she didn't have a patient, and she came running in. She's the one who really got Emma breathing again because she's a little more trained on emergency situations. In the end, there were about 20 people in her room in mere seconds. They transferred her over to the PICU, and the doctor told us he hoped it was just a cold/virus. There's something in babies' brains when they're less than 3 months old that will trigger them to stop breathing when they have a virus. We know that God was watching over our child by the way these events unfolded.

Emma stopped breathing again early Wednesday morning, so they ran a scope down her throat to see if there was any vocal chord paralysis or anything funny going on in her airways. All of that looked fine. After that, they put her on a ventilator to make sure she didn't stop breathing again. They did an EEG to measure her brain waves to see if she was having seizures. She was kinda sedated and very sleepy when they did the EEG. The results came back fine, but since she was alseep, they want to do another one when she's more awake. They did an MRI of her Chiari malformation and of her spine to see if there's something else going on there. The Chiari malformation is very common with spina bifida kids; the bottom of the brain is pulled down into the neck a little. It usually doesn't cause problems, but it can occasionally. Emma's Chiari is very compressed and would require surgery eventually, but Dr. Troup still doesn't think it's causing the breathing problems. There's also a really large fluid pocket in the middle of her spinal cord lower down that will cause major problems later in life, even affecting her arm movement, but this is not related to her breathing problems now. This is a surgery for later.

The goal right now is to get Emma off the ventilator to see how she does on her own. This morning, Emma wasn't under much sedation, so she was taking breaths on her own - unfortunately, she wasn't taking very many breaths at all, and they were very irregular. Because they're so irregular, she and the vent can't get in synch. She's basically fighting the vent. So now they've had to sedate her completely so that the vent does all the breathing for her. I can occasionally see her take her own breath, but it's very shallow and rare.

Even if they don't reach the goal of getting Emma off the vent, Dr. Troup will still do the Chiari decompression surgery next week. He took some fluid off her brain through a reservoir in her shunt - one, to test it for infection, and two, to pull extra fluid off. However, he doesn't think that any of these three things are causing the breathing problems. So it's just a waiting game to see what happens.

There's still a slight hope that there's a virus or infection somewhere causing all this, but as time passes and her breathing gets worse, this hope is fading. The best thing that could happen would be a virus - that's easy. She can get over that, and we can all move on.

So many people are wondering why none of this came up in the NICU. Two of our NICU nurses are asking themselves the same thing, and it's horribly sad. It's no one's fault; no one saw this coming. There's nothing on a test or a scan that could have detected any of this.

We keep asking ourselves why God could let this happen, how He could let a baby live like this, why she was in the NICU for 7 weeks and only home for a week. But it was the best week of our lives. We'd give anything to have her back home again. In my mind's eye, I keep seeing the moment that she stopped breathing over and over again. That was the last time I held her. Emma definitely recognizes my voice and knows who I am. Last night before we left, Emma was pretty alert and gazed at me while I told her how much I love her, that God loves her even more than I do, that He's taking care of her, holding her in His arms even as she lies in that hospital crib, and that He's with her always - she is NEVER alone. She kept eye contact with me the entire time that I was telling her these truths; I know she felt the Lord's love pouring out through me.

Please pray that her breathing problems are caused by the Chiari malformation or a virus.

So now we wait.