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We are back home.

Last night, Lily was discharged from the hospital, on oxygen, and now we are recovering here at home. And with the exception of a little scare we had this morning, she seems to be doing better.

Lily and her oxygen tank

For those of you who haven't heard about our hospital stay, let me share the story.

So, from my last post, you know that on Friday Lily tested positive for RSV and was given a prescription for respiratory therapy at American Fork Hospital. So, we went to the hospital for that on Friday and then again on Saturday. Sunday morning, Lily actually seemed to be doing better - more alert, less nasal congestion and so we debated taking her in to the hospital at all. Sunday evening, we were pretty sure that we didn't need to take her - we even thought we wouldn't need to take shifts that night so that someone was always awake with her. As it got close to bedtime, she seemed just a tad more stuffy and so we figured, why not take her in and just get her vital signs and oxygenation levels checked? It couldn't hurt and then we would really be able to sleep peacefully.

As we were headed up to the car, we passed our landlord (they live above us), who offered to watch Elena for us while we were gone. "Awesome", we said. "We will only be gone for about 45 minutes." (This turned out to be a huge blessing when things got dicey in the hospital- our landlord must have been inspired.) We were grateful for the offer, but didn't think too much of it, except that it would be nice not to have to take Elena - especially close to bedtime. On the way to the hospital we talked lightly about how nice it was that Lily was getting better and planned all the things we were going to do the coming (better) week - get our exercise programs going, Eric could get caught up on the school he'd miss, etc.

When we got to the respiratory therapist, we told her what was going on and that we weren't sure that Lily needed to be suctioned, but we wanted her to take a look and see what she thought. Once she got Lily hooked up to the oxygenation monitor, we saw that Lily's oxygen level was sitting in the low 80's (on a 0-100 scale: 100 is perfect and above 90 is acceptable). So, the therapist wanted to suction her and see if that got her levels back up. It turns out that Lily had just a decent deal of mucous, but that it was really thick. After watching Lily for a few minutes, post-suctioning, her levels were still in the 80's and she was still grunting, breathing fast, and having hard chest retractions. The therapist said she thought, taking all those factors and how little Lily is into account, that we would need to admit Lily to the hospital, but that she wanted to get one of her supervisors for a second opinion, first. Thankfully, we were able to call Eric's parents to pick up Elena from our landlord and watch her for us longer term. The other therapist came and while they kept watching and evaluating Lily, her oxygenation level fell into the 70's. A call to the on-call pediatrician sent us, with Lily hooked up to oxygen, to the emergency room to get admitted.

"The problem with these little tiny ones and RSV is that once they get bad, they start to go downhill fast," the therapist explained. "That's why we want to get her admitted."

And that is when the whirlwind started.

We had been in the ER for maybe 5 or 10 minutes, just getting Lily's vitals, getting her hooked up to another oxygenation monitor, when they started asking us questions about our medical history, what had been happening, etc. I was sitting on the bed, holding Lily, with Eric standing beside me, surrounded by the doctor and two or three nurses and we were answering questions for the doctor. All of a sudden, one of the nurses broke in with,

"Is she breathing??!"

I looked down to see Lily quickly turning purple, eyes shut, limp, and not responding. We couldn't see her visibly breathing. We looked up at the oxygenation monitor and the numbers were falling fast -

77

76

73

71

69

68

67

66

And this was ON oxygen! My heart jumped into my throat and my stomach sank. The doctor said something about rousing her and stimulating her to start breathing. I gently shook Lily a little and tried talking to her. The doctor and nurses reached out and started rubbing Lily's chest and legs and arms. It was one of the most horrible moments of my life. I can't even describe the feeling to you - I literally could feel a change in Lily's body as I was holding her. Besides of feeling limp and lifeless, it was like I could literally feel the life seeping out of her. Like I was connected with her in some way. It was a horrible feeling. I felt so helpless and so panicked. In those moments, while we were waiting for her to revive, my prayers changed. The words that the therapist had said about babies going downhill fast came back into my mind and a new idea entered my realm of possibilities,

"What if she doesn't get better?"

I hadn't thought of that before. But there she was, sitting there not responding and her oxygen dropping. Up until then I had been begging Heavenly Father to help her get better. I didn't stop praying for that, but I also knew, in that moment, that I needed to pray for the strength to face whatever would come. Because I was sitting there watching her not breathe and I knew I couldn't handle it if we kept going down that path. It was an interesting realization- being forced to accept the possibility that something might happen to her and changing my prayers accordingly.

This all seemed like an eternity, but in reality, it was probably only 8 or 10 seconds. Lily's eyes opened a little and she took a few breaths. Her color slowly started changing.

All of this really got the nurses and doctor hopping. The doctor left us to go order a chest x-ray and make some phone calls and decide what to do. Another four or five nurses came in and out of our room - working on IV's, blood draws, x-rays, taking vitals, more questions, etc. We never had less than three or four nurses in our room at a time. I sat there watching them, shaking from what had just happened. About 5 or 10 minutes later, the doctor came back into our room and said that they were going to transfer us up to Primary Children's Medical Center (in Salt Lake) via ambulance. A short time later, we were ready to go. I rode with Lily in the ambulance while Eric followed us in the car. (An interesting experience, but riding in an ambulance is not all its cracked up to be.) Both of us agreed, that that was the longest drive up to Salt Lake ever.

We were admitted to the ER at Primary Children's where they took more vitals, asked more questions, and did more monitoring. It was really interesting to see the difference between the nurses and doctors at the AF Hospital and at Primary Children's. Everyone at AF was very nice and very attentive, but you could tell they were really nervous - we definitely had their full attention in the ER. Everyone was very nice at Primary Children's, but they were much more relaxed. You could tell that they had dealt with cases like ours a lot and were very knowledgeable and calm. I think the ER doctor at AF made the right decision sending us up to Primary Children's. It made us so grateful to live so close to such a good resource while we have young kids!

The doctor told us about some possible treatment routes (albuterol)/ interventions (breathing tube if she stopped breathing on her own) and explained that basically, Lily would get over the virus just fine, we were just waiting for her lungs to clear up and for her to get over the worst of the illness. RSV peaks between 5-7 days and they would keep her until she was over the peak and could breathe well and keep her oxygen up on her own. Lily was stable, on oxygen, so we were transferred up to the third floor surgical unit for our stay (they were so full of RSV cases in the infant and medical units, that they were overflowing to any other units in the hospital that had room). We were finally allowed to try and get some sleep around 4 am, after Lily was looked at again and all hooked up to the monitors and we signed more paper work.

All night Eric and I kept shaking our heads and wondering how we could have missed the signs. To think - we almost didn't take her into the hospital! We had no clue how bad things really were! What would have happened? Thank heavens that we were inspired enough, at least, to take her into to get checked.

The next day (Monday), the doctor told us that Lily was still not breathing well enough on her own and that we would definitely be staying overnight again. Thankfully, the day passed pretty much without incident. The nurses had started weaning Lily slowly off of the oxygen by turning her levels down. She was on .12 liters (as opposed to the .75 liters she was admitted on) by the afternoon, but had to be increased to .25 liters again on Monday evening. We were blessed to have Eric's sister, Christy, and her family really close to us and they came and brought us some awesome meals (Cadbury eggs, what, what!). Feeding ourselves was the last thing on our mind that day - we were just glued to Lily's monitor - it was so nice to be so well taken care of.

We were very nervous about Monday night - that she would lapse into another episode like Sunday night- but it also passed without incident. Lily didn't sleep much - I think she was feeling pretty rotten. We had to have her suctioned three times just that night! And I was up until 6 am with her, until she FINALLY drifted off.

Tuesday morning, the doctor came by to check on Lily again and gave us much better news - he thought she would be ready to go home later that afternoon! They would need to do a serious of trials - no more deep nasal suctioning, room-air trials (no oxygen)- and see how she did, but if she passed them, then they would send us home. We could tell that she was definitely looking a little better that day.

Here's Lily unhooked from everything except her monitors! At the height of everything, she had three monitors on her chest, an oxygenation monitor on her foot, an IV (which they splinted to keep her arm straight - her little splinted arm was the cutest, saddest thing ever!), and oxygen. So, this was much better!

Getting examined by the doctor

She did fairly well with everything, except her oxygen levels kept dropping every once in a while. We talked with the doctor about staying another night and she ended up deciding to send us home with oxygen for Lily. She said that they wouldn't discharge her if they didn't feel confident that she was well enough, but that the oxygen would just be an added precaution for them and for us. It would also give her lungs more time to recover before they needed to pull their full weight again. We are supposed to take Lily in for a check-up tomorrow and do another room-air trial. If she passes that, she will be off oxygen. If not, we'll go for a few more days and then go back and try again.

So, there you have it. We are still waiting and watching. Basically just trying to survive until we're through with this. I had made myself a long to-do list last night after we got home (trying to recover from the absolute tornado our lives have been the last week), but we are not quite at that point yet. As we found out this morning, Lily requires pretty much constant monitoring still to make sure she is breathing well. I had just finished bulb-suctioning Lily and laid her in her bassinet in our room (next to the oxygen tank - its quite a process to move her around the house right now) and had gone to get (the much neglected) Elena out of the shower. Elena and I were in her room getting her dressed, when I heard Lily cough. I went into our room and found Lily trying to throw up, but unable to because she was lying down and consequently choking. She was purple, not breathing, eyes closed, and limp. I was able to get her up and help her get the throw up out. She was still limp and not breathing for a moment, but got better after a few seconds. So scary. This same thing happened last night (minus the choking): breastfeed, bulb-suction (because something about breast-feeding seems to bring it all to the front of her nose), and then throw up. So, at least I know now when to watch her really, really closely. So, things are still a little crazy. Watching and waiting makes you weary.

But, Lily does seem to be doing much better over all. Less stuffy, sleeping better, eating well, less raspy, seeming to breath easier, and better spirits. She is so tired right now... poor thing. But, I think her little body is on the mend. And for that, we are very, very grateful! Thanks for all your prayers and support - we have felt them! It's been a scary, tiring week, but we love our sweet Lily and are so grateful she is with us and recovering.