When Lissy Got Sick. Really, Really Sick.

Note: This is not about our current situation. This was a year and a half ago. I haven't had internet access except these few moments, and spend most of my time comforting an extremely miserable little girl right now, but I do spend a lot of time thinking about the magnitude of the blessings I've seen lately. I wrote this a while back and never posted because I never finished subsequent posts. So, I'll post it now, and re-date it later. I just wanted to show - miracles happen, they happen constantly, and although hard things happen, we are supported in all our trials.

By the way - in the last few minutes I have seen messages of hope, faith, prayer, and love directed at our family. I can't comprehend it, it's so amazing. Although I am weary, I am beyond grateful. Ok, enough stealing time in the Ronald McDonald family room, back to take care of the babe! I hope one day I will be able to document it all for Lissy to see what a special girl she is, how great is the goodness of God, and how wonderful the world is.

2/27/12

I don't know if it's possible to fully realize the incredible miracle of snuggling your sweet baby girl to sleep until you haven't been able to for two weeks. Or to treasure a smile and a giggle so much until you wondered if you would ever see it again. I have always loved and enjoyed Elisabeth, but now I am in absolute awe of her, and how amazing it is to kiss her cheek without a mask in the way, or to pick her up and not have her be on a short leash of tubes and wires. Her poor hands and feet have  bruises from the many I.V. sites, and neither one of us yet feels healthy, but here she is, breathing on her own, in our house, in my arms. Just eleven pounds of baby girl all snuggled up in pink fleece jammies, the answer to eleven million prayers. Thank you, Father. Thank you.
(I was bawling when I wrote this. Things were so crazy I didn't have time to write any more, but my heart was very, very full.)

3/25/12

In some ways I say, "All's well that ends well," regarding having Lissy in the hospital last month. And while that's true, I know that I went through so many experiences during that time that made me feel like I'd learned so much, that I don't know how well it ends if I don't remember the lessons. So this may be the longest post ever. But that's okay, our little family needs it. So . . .

Back to the beginning . . .

Our little family had been sniffling and coughing for most of February. Not any huge deal, but we hadn't been getting enough sleep due to the hearings-for-the-band-that-wants-to-drum-babies-out-of-bed-at-6-a.m., and also lack of Gary. He had been working especially long hours, 80 or more a week, like he does every winter. The sickness wasn't enough to keep us from visiting Preston for my sister's birthday, (One of the last times before the big move . . .another topic, but it was weird. Just had to not think about it.), but it was enough to slow us down. With enough humidifiers going, lemon tea, and albuterol, we were making it. We even thought we were better! We went to a ward party Friday night (the 10th), and after having a fun time went to bed thinking everything was just grand. But then I woke up in the middle of the night with body aches. I got up and took some medicine and then curled down in my covers as many different ways as I could to make myself go back to sleep. When I woke up the next morning, I still felt yucky, but meds could control it. But Gary felt yucky, Josh's cough was worse, Andrew had a yucky nose, and Lissy had a fever. Sick day.

That night in the middle of the night Lissy started working harder to breathe and her cough (which she had had for a couple of days) was even yuckier. At 3 a.m. she couldn't sleep and I was worried about her. She wasn't struggling enough to be taken to the E.R., but enough that I couldn't rest. Gary gave her a blessing, and in it she was blessed to recover fully. We all felt well enough to sleep for the rest of the night.

The next morning was Sunday. Noah had a talk to give in Primary, his first (SO cute, I want to write more about that), and I'd said I would sit in on his class, so since he was the only well-child and I could feel okay when drugged, just the two of us went to church together. Aside from that good memory, the rest of the day is a fog of sickness. I worried about Lissy's fever getting worse and worse, but I couldn't find a thermometer to measure it. She spent most of the day with her onsie unbuttoned so that I could lift it up and look at her chest to see how her breathing was going. I was feeling worse and worse myself, so much so that my voice was almost totally gone by the time I called around for a thermometer. My friend felt bad for us and brought us dinner, which was heaven-sent. I tried to read books to my boys, and Josh kept saying, "Cough, mom!" because he couldn't hear what I was saying. I kept thinking the entire day that I would need to take Lissy to urgent care, but since I've had kids with breathing trouble so much, I knew she wasn't to the point yet where they would do anything besides tell me to use a humidifier and Tylenol. As the day wore on her appetite got worse, but when she finally fell asleep in the evening, she seemed so peaceful I decided to just let her rest. Though not without first calling my dad to make sure she would wake up if she were in severe respiratory distress.

That night was pretty awful. When Lissy finally woke up, it was too late (1 or 2 a.m.) to go to urgent care or to call anyone, but not bad enough to take her to the E.R. She kind of tried to eat, but didn't really eat much, then just cried her pitiful cry and coughed her nasty cough. I couldn't let her be alone in bed, I had to know she was okay, so I slept on my side with Lissy in the crook of my arm. Gary woke up to go to work around 6 a.m., and Lissy woke up, too. She acted hungry, but when I tried to feed her, she wouldn't eat. That's when I was absolutely sure I would take her to the doctor the second I got a chance. The distance between 6 and 8 o' clock seemed like eternity.

I finally got Lissy back to sleep, but I got ready for the day so I could leave the minute I needed to. I got an appointment with our pediatrician for 9:15, but even though I was worried about Lissy, I wasn't thinking it would be too dramatic. My friend offered to watch Noah and Andrew, but I decided to take them with me thinking that if they went somewhere else they would only share our diseases. My other kids have all had RSV and/or other brochiolitic viruses, and though they got pretty sick, it was nothing that couldn't be treated with a doctor's visit or two, along with a lot of home TLC. When Lissy woke up I heard Noah in by her bed singing her, "Hey, soul sister, ain't that Mister Mister on the radio . . ." She wouldn't quit crying all morning, but when I was running around doing things I came back to find Lissy on Noah's lap, with him rocking and singing, "I am a Child of God." I offered to feed her about every 10 minutes all morning, but she refused to even try to latch on.

At the doctor's office she started out with all of the normal stuff - weight, temperature, oxygen saturation . . . and that was a problem. Her sats were moving between 85 and 89, which isn't scary low, but too low for a little baby to just go home. Instead of telling me to wait for the doctor, the M.A. went and got the doctor to come straight in. The other big problem was that her respirations were 96 per minute, which I didn't have a frame of reference for before, but after living for two weeks with that being the most important stat of my life, I know that is very, very fast. The doctor said Lissy would need to go to the hospital for an 8 hour observation before we could go home, especially since the RSV test was positive. She gave me the option of Primary Children's or Mountain West Medical Center, which is our local hospital. I have had some interesting experiences with Mountain West, so I chose Primary's. I called my friend to come get Noah and Andrew, and when she came she brought me some snacks that turned out to be a life-saver.

When I returned to the room after saying good-bye to my boys, the M.A. was telling some paramedics on the phone to take Lissy to Mountain West. What? I was surprised, and when I asked about it she said, "Mountain West is fine, my kids have been there. " I said, "Mine have too, and it can be fine, but I'm just not sure." I didn't want to be a drama queen, you know, that lady who has to go to Primary's, so I said ok. But when the paramedics came and asked where they were taking us, the

9/23

I never had a chance to finish this story. I've thought and worried about not doing it a lot, but always think it's better to keep current on what we're doing so I don't get further behind. Then today was the Brigham City temple dedication. It was amazing. So powerful at so many moments. One impression I got was that I need to finish writing this. Coming back to it I am amazed at how many details I have forgotten, and feel sad I didn't write things earlier. But, all I can do is my best at this moment, so here goes . . .

So, when the paramedics came and asked where they were taking us, the M.A. said "Mountain West." But I couldn't feel great about it. I mentioned that we had discussed Primary's, and they told me they'd take us anywhere. It seemed like 10 people were staring at me and the world was in slow motion. It was probably only 5, but still . . . suddenly the doctor came into the room and saw the dilemma. She calmly and cheerfully said, "Why don't we just send you to Primary's?" I will always be thankful to her for that, as not only did it really help in the moment, but it turned out to be an inspired decision.

The ride in the ambulance was uneventful, besides the fact that, um, yeah, I was in an ambulance with my baby. They actually had her ride in her carseat on the stretcher. She had oxygen flowing the entire time, and with it her sats were fine and she seemed to feel much better. I was tired and had a foggy sick-head, but I spent the entire time letting people know what was going on. Yes, that picture I just texted you was Lissy in her carseat in an ambulance.

Lissy's ambulance adventure . . . she actually felt much better at this point due to the oxygen.

 By the time we arrived at the hospital, I almost felt stupid that we were there. Lissy was doing so well with the oxygen that you could tell nobody was very concerned. Once they got the full story, though, they became worried about the fact she hadn't eaten in a long time. The nurse asked me to try to nurse Lissy, so I tried again. Lissy wouldn't even try to latch on. Crazy thing is, as I write this, I can remember exactly what the nurse looked like - tall, probably early 40's, really nice . . . everyone there was really nice . . . anyway, the nurse said that sometimes nursing is too much work for babies, and had me try a bottle of Pedialyte, just to hydrate her. She wasn't having it. I think at that point it was determined that she would need an I.V. to get her hydrated. The nurse tried to start it, but couldn't find a vein, so they called in the I.V. team. That was a trip. The I.V. team came in, turned off the lights, and used an ultraviolet light to find a vein. With the I.V. in and a nasal cannula smoothly delivering the oxygen, Lissy relaxed, and I realized I felt awful. Being introduced to the hospital grade breast pump helped me feel better, as did my friend's snacks that had been saving me all day, but at some point I needed ibuprofen and food. The E.R. doctor that was helping Lissy got me some meds, and the nurses volunteered to hold Lissy while I got something to eat.

Before things got dramatic, it was fun to take pictures of the events. Here she is getting all warmed up  for her I.V. insertion.

The nurse called this hot packs (I.V. prep) Lissy's boxing gloves.

Normally my first reaction would be to tell Gary to come running to us, and Gary's first reaction would be to come, but this was near the end of the legislative session . . . no running to us for Gary. He had a huge meeting he was in charge of the next day, and this whole thing seemed manageable in the beginning. I was in charge of a Valentine's Day party for preschool the next day, and I already had it planned, so I thought I'd just finish throwing it together when we got home that evening . . . yeah, I really thought that. At some point we were told Lissy would need to stay overnight for observation, but just in the "rapid transition unit." I only spent an afternoon/evening there, but I love the rapid transition unit. The (male) nurse we had was so awesome. He made sure I had a place to lie down, snacks as much as I needed them, and slipped me medicine when it was obvious I needed it. That little bed they made me looked sooooo good, and I looked forward to getting some rest. Except that Lissy couldn't rest. She screamed unless she was held, and kind of lightly fussed even though she was in my arms. I normally love a chance to sit and snuggle my sweet baby, but she wasn't relaxed, she was hooked up to tubes and wires, and my head and throat were feeling worse by the second . . .and then the cavalry arrived.

My sweet mama walked in and immediately took baby Lissy. She let me lie down, and even go out and use the phone. Aaah . . . But still, no rest. The doctor that came in to check on Lissy noted that she seemed to be struggling a little bit too much to breathe, and said that if she couldn't breathe a little easier, she might tire out and stop. The way to help this problem, she said, is to go to Intensive Care and be placed on high flow oxygen, which is an entirely different delivery system for oxygen that actually blows the air in with such force it forces the lungs to inflate. I hadn't been very concerned about Lissy's outcome, but when I considered the meaning of being sent to the ICU, I had a little mini-moment of deep concern. It quickly went away, though. I had my dad call me in an antibiotic for my sinus infection/bronchitis, and earnestly looked forward to the next week when the whole experience would be behind us.

Gary arrived at the hospital in the evening, and my mom went home to take care of the boys . . . including making Valentines for their class parties the next day. Gary got ice cream, and we enjoyed being together as the ICU question was tossed around. Finally around 11 p.m. the doctor came in, saw Lissy's work of breathing had become worse, and said, "Let's do it." As we made the move, we were introduced to a whole new round of doctors and nurses, something that would eventually become routine. The respiratory therapist that was assigned to admit Lissy to intensive care was amusing. We stopped to get her a chest x-ray on our way, and she did NOT like it. The RT said, "Well, we probably shouldn't let her fill out a comment card." It was very surprising to see how many doctors and nurses were required to admit one little babe to the ICU . . . I met attendings, fellows, residents, therapists . . . There were masses of them standing around her hospital bed, and at one point someone said, "Ready?" Everyone picked up notebooks and pens. "Okay, this is Elisabeth, who presented at the clinc . . . " They all wrote it.

Super-sick babe, right before her transfer to the ICU. You can see that already the I.V. fluids had made her extremely swollen if you compare this picture to the ones I took when she first arrived. I think I took this picture with the thought I'd show it to the boys, though my picture-taking mood was largely past.

The transfer to the pediatric intensive care unit at Primary Children's is one of the many signs that the Lord was watching out for baby Elisabeth. Primary's is the children's hospital for 5 states, and had she gone anywhere else, she would have been life-flighted to Primary's that evening. While that could have merely been extra drama, it could have been scary complications. This girl went from looking border-line ok to being in the intensive care on 8 liters of high-flow oxygen (the highest it will go) in a short period of time. I will be forever grateful we were already at Primary's.

By the time things were settled down - around midnight - I was feeling horrible. My voice could barely scratch out a sentence, my throat was on fire, and my head was pounding. There was nothing but a chair next to Lissy's new bed in the ICU, but I knew I had to be there for my baby. Then the nurse, Liz, came up to me and said, "So, you seem like you're really sick. I know it's hard to leave your baby, I would have a hard time with it, too, but if I were you, that's what I'd do. You need rest to take care of her." Leave my baby in the intensive care?! Yes, person after person told me I should. She had one on one attention now. I was so sick I went along with it, and let Gary lead me to the car. I vowed to be there at 8 a.m. sharp the next morning when they started letting people in. How did I get home that night? Definitely Gary driving, but the whole memory goes off after I left baby Lissy hooked up to high-flow oxygen in intensive care.