The end of another great hockey season

Wednesday was the last hockey game. It was Spencer's 8th season and Tyler's 2nd. I missed a few games towards the end, what with having a baby and living in the hospital for a couple weeks and all; but my mom watched Chloe so I could go to the play-off game. They lost 3-1 to their cousins (Alec, Jacob and Peter), so that was a bummer, but I'm so proud of them. Spencer scored the most goals of the whole division this season - 28!! The next highest going into the play-offs were 20, then 15, then several 10's. Tyler got a lot more comfortable on his skates, became more aggressive and stopped a bunch of pucks. Now we get a couple weeks off before it starts up again. I want Dallin to play, because I can't think of anyone tougher than him (except maybe Levi!), but so far he's not interested.

Welcome home, baby!

After being off oxygen for 24 hours, Chloe was able to leave the hospital on Tuesday. Her sats dropped a little bit that last night there, but they gave her a treatment, performed chest percussions and suctioned out her mouth, and she did better after that. We were home when the boys got off school, and they were SO excited to see us.

For family home evening the night before, they made me a huge list of all the things they loved and missed about me while I was gone. It made me cry. Here are a few of the things they wrote: my smile, homemade cookies, tucking them in at night, reading them books, hugs and kisses, cooking dinner, cleaning, laundry, helping them say their prayers, playing games, talking to them about their day, playing, laughing at their silly jokes, my pretty face, giving them gum at church, helping with homework, taking them places and loving them, even when I'm angry. I missed them just as much. It was quiet and calm in the hospital, but I missed the noise, chaos, work and joy of being a mom to these sweet boys. I think the whole experience made us all appreciate each other SO much.

And cute little Chloe is doing so much better! She never has to work hard to breath, and her cough improves every day. She spends all her waking minutes looking around at her surroundings with wide eyes, like she knows she's in a new place. I love putting clothes on her and holding her without wires and kissing those soft cheeks without oxygen tubes and yucky tape in the way. Now I just need to fatten her up. She still wasn't up to her birth weight when we left the hospital.

We're a little bored here. Can you tell?

My doctor said his goal was to get us to the point where Chloe is doing so great that we're sitting around, wondering why we're still here. As you can see, we're getting close to that point. She has a cute shamrock dress at home, but we had to make do with a green onesie and some picnik stickers.

But the doctor wants to make sure she does well for a decent length of time, and they're still weaning her off the oxygen. They just took her off of high flow, and now she's down to just 1/2 a liter. So far her sats have stayed up.

She's sleeping great and taking wonderful long naps, interspersed with long periods of alertness.

I love those big, bright eyes! She reminds me of baby Tyler. Dave's not coming down for a couple of days because there's a stomach bug threatening the homefront. I hope it resolves quickly so we can go home to a healthy house!

Visitors!

Today was the Pinewood Derby. It's a good thing Tyler wanted to start making his car super early, because we've been pretty distracted the past few weeks. Dave went home early last night to help him finish it up.

Very cool design!

His cub master is so creative and fun, and they all had a great time.

I was feeling bad about not being able to be there this year, but then I remembered that I don't like those things. I get so nervous, and I hate to see the boys lose. But apparently there were lots more races this year with 4 cars racing at a time and a cool electronic finish line that showed each car's time, so there was less emphasis on winning/losing.

They came down to visit afterwards, and he showed me his awesome car.

There was a full house in the pediatric unit last night (it was so loud!), but then there were 3 discharges this morning, leaving just Chloe and another RSV baby. I'm always so jealous when I see someone go home. But it was nice and quiet after the patients left, and my sweet nurses let my whole family in to see us. There were lots of extra lunches, so the nurses gave them to the boys. They had already eaten lunch, but that didn't stop them from chowing down.

This was the first time they were able to hold Chloe in almost 2 weeks, or 2/3 or her life. They say she's changed a lot. She's doing better every day, and the respiratory therapists have started lowering her oxygen % and flow.

The nurses went nuts about how cute, polite and social the boys are. One thing I love about the staff here is that they genuinely like kids, which is why they work in pediatrics.

Levi was excited he got a knife to cut his peanut butter and jelly sandwich. Then he started playing with toys, running around and making a lot of noise, so they couldn't stay long.

We left Dave with Chloe for a couple hours and went bowling at Cal Poly, since it was raining and we couldn't go to the park.

It was really busy there (what else can you do in SLO when it's raining?), so they played arcades while we waited for a lane.

Everyone did great. Of course the bumpers really helped!


Brennan's bowls were a group effort.

That's a heavy ball for him!

Levi was a handful! I tried to let him "help" me bowl, but I ended up knocking him in the head by accident. He kept escaping, biting Brennan, and taking everything out of my purse. I guess he isn't quite old enough for bowling! But he liked putting his head on the ball return thingy to feel the air blowing out.

It was pouring down rain when we left, and we didn't park too close (you know how campus parking is!), so I left the boys there while I ran to get the car. I had an umbrella, but my pants got soaking wet. What an adventure! Dave and Chloe had a nice nap together the whole time we were gone.

3 weeks

Chloe is 3 weeks old today. Can you believe it? I'm having fun with the online photo site picnik.com. Too bad the site is closing next month. If you have pictures you want to fix, you should check it out. Everything is free.

The past few days really have been a roller coaster. Overall she is doing better, meaning the RSV is pretty much gone. No more fevers, no more nasal congestion. But the big problem now is mucous plugging in her lungs. They are thick and hard for her to clear. We are still doing the nebulizer treatments and high flow oxygen to help her expand her lungs, and they have a little vibrating tool to help loosen up the gunk. Her right lower lung is still the most congested, but the general consensus is that she has better air movement overall. There are occasional episodes that scare me to death when the mucous plugs dislodge and cut off a larger airway. Then she goes into respiratory distress until she's able to clear it. The worst was Wednesday night. Her O2 sats dropped really low and her face turned blue. The nurses all rushed in and gave her lots of oxygen and almost had to bag her. The doctor wasn't surprised and said that could continue to happen until she gets rid of all the mucous. She is one tough cookie, and she's been coughing up some phlegm. What a slow, hard process.

Rough day

You wouldn't know it by looking at this sweet innocent face, but the past 24 hours have been rough for Chloe. It started out when she screamed from midnight to 3:00 a.m. or so. I feel bad for my neighbors, but really, they're not too quiet themselves. I don't know what she was so upset about, but I've been pretty tired all day, despite a long nap.

This morning the doctor was concerned that her respiratory rate was too fast and shallow, indicating that she wasn't expanding the lower sections of her lungs. So he decided to put her on high flow air. The amount of oxygen is the same, but it's mixed with room air at a higher flow to help open her lungs. I think it has helped, and her lungs sound better tonight than they have all week.

The air goes through a warmer and adds moisture to help loosen up the mucous in her lungs. Plus they can put the albuteral treatments directly into the tube, which is good because she really doesn't like the nebulizer blowing in her face. The problem is that she is attached to this huge thing, making it harder to get around in this small space. They also put the chest leads back on to monitor her respiratory rate, so there are lots more wires in general.

Then she had another episode of respiratory distress tonight that scared us. Her heart rate has been hovering around 180, which is already pretty fast. But after an albuterol treamment (which raises her heart rate) it shot up to 200. In case you're wondering, that's FAST! Her respiratory rate also went up to 100. Can you imagine breathing that fast? That's enough to wear anyone out. This picture was taken this morning when things were going pretty good. Apparently the oxygen tube that attaches to the wall had gotten loose, so the air pressure was way too low. The respiratory therapist (who usually just works with adults) didn't know how to use this machine (which is usually just used in the NICU); so she lowered the air flow and gave her a regular nubilizer treatment. She must have bumped the oxygen tube in the process. Luckily Dave figured it out and fixed it. I'm sure glad it happened while he was still here! She's sleeping calmly now, so I really should get some sleep while I can.

Gratitude

When the boys came down to visit Sunday, Spencer raved about the talk on gratitude. He said it was just what he needed to hear that day. It made him realize that in all his prayers recently he had been just asking for things and that he needed to say thank-you more. I'm so glad he told me that, because it made me think about all the things I have to be thankful for too. So here is my gratitude list:

1. I am thankful for Dave, who has spent every possible minute with me and Chloe in the hospital. His work has been super supportive, and he's been able to work half-days.

2. I am thankful for Kristen and Nathan and my parents taking care of my boys. I know that they are in good hands, so I can just focus on taking care of Chloe.

3. I am thankful for the doctors, nurses, respiratory therapists and aids here at Sierra Vista Hospital. Everyone is SO nice to us and super sweet to Chloe. They always tell me how beautiful she is.

4. I am thankful for the hospital food. No, really. I love that I don't have to think about, shop for, prepare or clean up meals. And the girls who come get my food orders are super cute, smiley, and nice. They remind me of my sister MaryRuth. The food itself is actually quite good. I especially like the chocolate cookies.

5. I am thankful for all the prayers and fasting on our behalf. I can really feel it helping, and it strengthens my faith. It also helps me feel closer to people.

6. I am thankful I can still nurse Chloe. Apparently a lot of RSV babies are too weak to nurse, and everyone tells me how great it is that she is able to do it. The baby next to us had to be fed through a tube.

7. I am thankful for the beautiful weather, cute hospital courtyard and fun park nearby. It's nice to have a place to go when I need to get out of the hospital to go for a walk or play with the boys.

8. I am so thankful Chloe is improving! She really turned the corner Sunday and Monday: she requires less oxygen (down to .8 liters), has fewer episodes of respiratory distress, needs her nose/mouth suctioned out less, has lower temps and is more alert. There are times after I nurse her that she just opens her eyes wide and focuses on my face. Often it's in the middle of the night, and I just stare at her big beautiful eyes until she goes back to sleep. The doctor feels she is past the worst of it and will be able to go home in the next few days. We are just waiting for her to go off oxygen, keep up her O2 sats, lower her respiratory rate and reduce her nasal/chest congestion. But I feel more patient and less anxious to get out of here. I just know things are going to be okay.

Weekend update

Chloe's condition actually worsened this weekend. She's had several fever spikes, requires more oxygen, and has episodes when she really works hard to breath by grunting, coughing, breathing very fast, and using her chest and stomach muscles to get air in/out. It's pretty scary to watch because I feel so helpless. They've repeated the chest x-ray a couple of times and done blood and urine tests to see if there's a secondary bacterial infection going on. There are now infiltrates in the right lower lung which could be pneumonia or mucous plugging, but the doctor still feels that it's all related to the RSV alone because the labs aren't that remarkable. So that's a relief. They've increased her nebulizer treatments, which seems to help loosen up the mucous, and kept up with the Tylenol, because everything gets worse when her fever goes up.

But I was able to get away for a little bit yesterday. After helping Tyler with his pinewood derby car Saturday morning, Dave brought the boys down to visit. We left Chloe with the nurses for a couple of hours and all went over to the park to play. It was a gorgeous day!

Levi wasn't shy this time. He ran right up to me to be held. Then the sweet nurse snuck them all in to see Chloe, so that was fun for them. They were happy to see she's still a little baby, because they feel like they're missing the whole newborn stage.

We used to go to this park a lot when Spencer and Tyler were little, and they kept saying, "I remember this!"



They brought down scooters, roller blades and hockey stuff (there's a really nice, new outdoor roller rink there). I had to go back to feed Chloe, but they kept playing a couple more hours. Then Dave stayed with Chloe while I took the boys to Sears for new shoes.

After being stuck in a windowless room for a week, I was happy to take some good outdoor lighting pictures of my cute boys.

Kristen and Nathan brought the boys down to visit after church today. It was a colder day, so we couldn't spend as much time outside. But they brought me a red velvet cake, and we had fun eating it in the cafeteria. Kristen offered to have the boys stay at her house for a little while, and they were SO excited about having a slumber party with their cousins tonight!

It's always good to have a little break and get out of the hospital for a bit, and then I'm eager to come back to Chloe. There's a little baby in the room next to us that just got intubated and is about to be transferred to another hospital. It was very scary to hear the whole process through the curtain. It helps me realize just how dangerous RSV is for little babies, and it makes me extra grateful that Chloe is doing as well as she is. We had a family fast for her today, and I am so grateful to everyone for their prayers and support. We feel so loved!

Still here...

Chloe and I are still hanging out in the hospital. They tried to take her off oxygen again this morning, but her sats immediately went down to 80-85%. The doctor said that her airways are just so tiny that the smallest amount of congestion will block them and make it hard to get enough oxygen out of the air. She's only on 1/2 a liter of oxygen, but as soon as they put her back on it, her sats jump up to 99%.

I was pretty discouraged about not being able to go home today, and the doctor said we're probably looking at several more days. Plus Dave headed back to work today. But Kristen offered to bring my kids down to visit me after school, and that made a huge difference. I looked forward to it all day. I miss them so much! Dave stayed with Chloe while I played with the boys in the hospital courtyard. We ordered some pizzas for dinner then headed over to the park to play until it got dark. It was just wonderful.

The boys really wanted to see Chloe, but kids under 12 aren't allowed in the peds unit. At the end of our visit they looked through the pediatric door window while Dave held her up for them to see. They're doing really well, but it's been hard on them too. When they first got here, they all ran up and gave me big hugs. Except Levi. He took one look at me, turned around and walked away. But he warmed up quickly and wanted me to carry him to the park. And for the first time in months, I was able to do it. He was a stinker during dinner (whined about which piece of pizza he got), but I didn't even care. I miss that stinker.

Poor baby!

The past few days have been rough for little Chloe. It started last week when she got a cold. Brennan and Levi had both been sick with a runny nose, cough and fever (Tyler and Dallin had very mild nasal congestion), and I tried to keep them all away from her. But on Friday she started getting a runny nose and cough. I felt so bad! She continued to eat and sleep great, and it really didn't seem to bother her. Then Monday evening her cough was sounding deeper and harsher. She started to get cranky (which wasn't normal for her - she's been a very content baby), and then she developed a fever around 9:30 p.m. I immediately called her doctor, and the nurse told us to take her to the E.R. My mom came over to stay with the boys while we quickly packed a bag for the hospital. The diagnosis of R.S.V. was made via a nasal swab, and she was admitted around 1:30 A.M. due to her low oxygen saturation, fever and difficulty breathing.

The next 2 hours were spent connecting her to oxygen and lots of wires, lavaging/sucking the mucous out of her nose and mouth and giving her breathing treatments. Dave got home around 4:00 A.M. for a quick nap before getting the boys up and ready for school.

Chloe and I got very little sleep that first night. She HATED all the wires, ESPECIALLY the oxygen tube in her nose, and the alarms kept going off from low oxygen and loose wires. The nurse came in every 30 minutes to clean out her nose and readjust wires.

Apparently her history was classic for R.S.V.: older siblings with colds, (worse for younger kids), mild upper respiratory symptoms for a few days, getting worse and peaking at day 5. There are 4 other baby girls in the pediatric unit right now, and they all have R.S.V.

We have had such an outpouring of love, prayers and support from family and friends. Kristen and my parents have watched our kids, and Dave's work cancelled all his appointments for 2 days and told him to take as much time off as he needed. He's been able to spend a lot of time with us here at the hospital. Friends have driven our kids to/from school, and we've gotten lots of calls, emails & texts from those concerned.

Chloe has been such a trooper. She continues to nurse & sleep well, and she has learned to accept all the wires. They took the oxygen off this afternoon to see how she'd do on room air, and it went well for a few hours. But her oxygen sats started dropping for the past hour or so, and they've had to put her back on it. They said she needs to be off the oxygen for 24 hours before we can go home, so I really hope she can get off it soon.

She does try to pull the oxygen out when her hands get free, though. What a smart cookie for being just 12 days old!