RSV- the very long story of an illness with a very short name.

Catcher is sleeping peacefully, somehow though, sleep for him is a little scary for me. Last week on about sunday i started to notice that the "cold" Catcher had caught from his sisters seemed a little worse for him, which didn't really surprise me. So i continued to watch and by monday i was feeling like he was working a little too hard to breathe, so later that day i took him and Katie to the hospital as she was wheezing a bit from all the coughing too. The dr was more concerned about Katie than Catcher, he listened to Catcher's breathing and because he didn't have any wheezing the dr just said he was fine. Well I, as a mother, did not agree with his opinion. After knowing what my baby's "normal" behavior was for several weeks now, it was obvious to me that his behavior was anything but normal and that he was struggling to breathe no matter what you could or could not hear in his lungs. So in the middle of the night i finally decided to just take Catcher to the ER, i wanted a chest x-ray and an RSV test. For those who don't know, RSV is what most of us have when we get a bad cold, the kind that makes you cough a lot. And for most kids over age 3 and adults, that's all it is, a bad cold. But for babies or kids who have lung issues already (like Katie) it can be much more serious, even deadly. And in my gut i just knew that's what Katie and Catcher both were dealing with.

At the ER they basically just humored me. I mean they really didn't think there was much wrong with Catcher, he didn't really look sick and of course, they couldn't hear anything in his breathing that had them worried. Then after the x-ray they told me it probably wasn't RSV because the x-ray was clear. But i pushed so they tested for it anyway. The dr was pretty much ready to just send us home when the RSV test came back positive. You could have knocked that dr over with a feather at that point. Then he didn't really know what to do, RSV in a baby who was a preemie and not only a preemie, but a preemie who's only issue at birth was immature lungs...it was a given that this baby with RSV was most definitely going to get worse. But he wasn't worse yet. So we talked about options. I could have the baby admitted to be watched to see if/when he got worse. or they could order a nebulizer to do breathing treatments at home that they thought would help and just go home. After thinking about it for a little bit, i decided to go ahead and let them order the nebulizer and just go home. The nebulizer was supposed to arrive within four hours of discharge from the hospital....yeah right!! I waited and waited and waited the rest of the day, it never came.

By late tuesday evening i felt like his breathing was getting worse and the nebulizer which should have helped had still not come. So we went back to the ER and this time they admitted him to the hospital. His breathing was fast and his oxygenation was low, a clear sign he was in distress. I felt bad for having left earlier in the day when i probably should have just stayed. When they found out the nebulizer never arrived i can't tell you how mad the dr was! This could have been a life or death situation, this machine is to help breathing, a rather important function of the human body!! So they ordered it again, figuring he'd probably only be in the hospital a day or two and then go home with the nebulizer. Well yet again, it didn't arrive....and yet again, very angry dr's! In the meantime they put Catcher on oxygen to help relieve his stressed lungs. Unfortunately it only helped a little, no matter how high they had it. All day wednesday they continued to try to relax his breathing, and nothing was working. By thursday Catcher was practically panting, breathing so fast he was at danger of really causing some damage. Even the monitor showed he was oxygenating his blood at 95-100% (perfect) an arterial blood gas test showed otherwise. Then as Catcher would fall asleep and relax, his respirations would get more and more shallow until on several ocassions he just stopped breathing altogether. That was when things started to escalate and the Modesto Kaiser hospital where we were staying basically finally gave up, and decided to send him to Kaiser Santa Clara, where there was a pediatric ICU. They really weren't prepared for the level of care he was needing. They arranged for a transport and then we had to wait.

During the waiting time i tried to run home and shower and grab a few things to take with me to Santa Clara and also we had Adam and his dad give Catcher a blessing. The blessing ended up being right before the ambulance arrived to pick him up and things got a little crazy at that point. Signing papers getting the baby settled on the gurney, and just having to say goodbye to Adam not knowing when we'd be back. On the ambulance ride, i rode in the front seat so i didn't get to be close to Catcher and i kept turning around to remind them not to let him fall asleep, because that's when he would stop breathing....i was so scared, i mean i know they were prepared for anything but i hated not being right next to him to watch him personally.

When we arrived in Santa Clara it was around 11 at night i think, many of the days seemed to run together and the only thing i'm entirely sure of is that it was late and i was tired. The nurses who had been riding in the back with Catcher said they thought the ambulance ride must have been all he needed because he slept most of the ride and was breathing almost normal. Ok at this point you could have knocked ME over with a feather...how could one ride in the ambulance have changed his status so much?! Then i realized, it wasn't the ambulance ride at all, it was the blessing he recieved right before the ambulance ride. At that point i felt comfortable that he was going to get better.

They place him in pediatric ICU but by this point they really didn't feel he needed as much care as they had originally expected. he was on oxygen to support his breathing and had an IV because his appetite was low from being sick...that was pretty much it. Otherwise he just slept. When he woke, i fed him, then i would just lay him back down and he was either lay there and look around or just go to sleep, he was the easiest kid i've ever had in the hospital. withing a few days they sent him to the regular pediatric unit instead of ICU.

By this point i'd been spending so much time in the hospital, but i really needed a better place to sleep and a laundry facility to wash the one pair of clothes i had other than what i was wearing. Kaiser Santa Clara is a very large hospital and aside from the pediatric intensive care unit (icu) they also had a cancer treatment center, so a lot of times families of patients were there for extended periods and just for those families they had a house called JW House. JW House was built by the family of a child who died of cancer, named JW. This house was amazing. You had to be referred there by the hospital social worker and whether or not you got a room was based on how far you were from home and severitiy of the person you were staying with in the hospital. Well they put me at the top of a very long list because we were so far away and Catcher was in ICU when the referral was submitted. They told me that until a room became available that i could use all other parts of their facility. This included free laundry (and free laundry detergent) and a HUGE kitchen, fully stocked with food. They made brownies fresh every morning and most nights a large dinner was provided. There were serenity gardens throughout as a place to meditate or pray for your loved one in the hospital. The common room had 100's of movies and even a Wii and direct tv satellite. There was a day use room for people who hadn't gotten their own room yet and if you were on the waiting list you could come and use the day use room each day. The day use room had a shower and furniture to relax on, you couldn't stay there all day, but at least a few hours there would make you feel better after days in a hospital room sleeping in a chair. Saturday though they called and told me a room was available for me.

The room was like a five star hotel! Not only did the house have a huge stocked kitchen, but my room had it's own kitchen too! I also had a private patio area and the most comfortable bed and pillows i had ever slept on! The sheets weren't cheap like most hotel sheets are, these were high thread counts soft plush sheets. I tell you every time i slept there, the moment my head hit that pillow, i was out. i always had to make sure to set an alarm otherwise i probably could have slept forever there! I really only slept there for about five hours at night, i would let the nurses feed him a bottle of breastmilk i'd pumped so i could sleep more than two hours which is all i would get between feedings otherwise. The JW House probably saved my sanity, i'm not sure how i would have made it through without there kindness and well of course their brownies :) The cost there was only $30 a night which is cheaper than any hotel i know of, and it was right next to the hospital so i could walk easily back and forth. Plus i think they had a program for sponsoring your stay if you couldn't afford it. I only stayed two nights, two very comfortable nights.

Monday afternoon the dr's told me they were going to transfer him back to modesto which was a little frustrating. My dad had brought me his truck to have a vehicle while i was there, and i was figuring i would be driving Catcher home when he was done. Instead i would have to follow him in an ambulance ride....that would not be fun. The reason i had my dad's truck instead of our spare car (the black camry) was quite a sad story. Adam wanted to bring me the camry on friday, the day after we'd been transferred to santa clara, so he got new tires on it and had an oil change, so it would be good and ready for a fair bit of driving. He had Matt follow him to give him a ride home after leaving me the car, well after all the money he put into it, while driving on the freeway at 70 miles per hour, the engine seized up and DIED! Dead, gone, caput, right there in the middle of the freeway. Poor Husband Man, he couldn't stop saying, "if only it had been before all the money i just put into it!!" We'd known for while we were on borrowed time with that car, the engine was diagnosed with a pretty serious problem at least 5 years ago where they told us it would only last about another year and it's lasted four more so hey, it did better than expected, and to be honest, i'm glad it happened then, rather than when i would be driving home....that would have been very scary for me.

In the meantime, while we were waiting to hear if Modesto Kaiser had a room available, i had asked the dr to give Catcher tylenol, his coughing sounded sooo painful, i know when i cough that hard it hurts. The dr said it wouldn't really help, it wasn't a cough syrup or anything, there isn't much of anything they can do for a tiny baby's cough. But i persisted and they relented and decided to give him tylenol. Then i had to talk the nurse into it as well, he kept saying that tylenol doesn't help babies with RSV so why bother. Again, i persisted and he gave in, and gave Catcher tylenol. The next feeding was about an hour after that and when Catcher woke up to eat he was like a whole new baby. All of his normal behaviors were back and....NO COUGH! he still coughed once or twice, little coughs, but nothing like he had been doing before where he coughed so long and hard he could hardly breathe. The medical staff was shocked! they could not believe that tylenol had made that much of a difference. I feel it was an inspiration from Heavenly Father that made me continue to push for tylenol. Then since it helped so much with most of his symptoms i decided to try taking off his oxygen. He had been weaned down to .1 litres which is the lowest you can possibly go so i just took it out of his nose and set it on top of his nose so if he needed it again it would be easy to put right back in. Well while his saturation dropped a bit, it stabilized at a safe number and stayed there. I told the nurse and she said we would just continue to watch him while we waited to find out about transfer back to modesto.

Several hours later the head of pediatrics came him, she said she'd been watching Catcher's monitors and felt that maybe he should just go home instead of transferred to the modesto Kaiser. Oh i could have hugged her!! We had been in the hospital for six days, and i really felt like since he didn't need oxygen anymore that there really wasn't anything left for them to do....and she agreed! So Monday evening we were released to go home, i got to take little Catcher and drive home in the truck, like i had hoped. We even had great traffic the whole way.

If you made it to the end of this blog, good for you, i write this mostly for me so i don't forget, i know it's more than most would want to read, but it's my life, and if i don't write it down sometimes the details get forgotten. It's the little things that make life worthwhile. The hand of God has been ever present in our lives, his fingerprints are hard to miss.

Klamath Falls, OR

Our vacation in Klamath Falls, Oregon last week was very fun

We drove up on Monday, we left around 8am, had to stop once to feed Catcher and arrived in Redding at 12:30. That was perfect, we met up with some old friends and had lunch at the mall, and let the kids run around in the mall's play area for a while before heading on. It was 3pm when we started on the road again. The drive was nice, the clouds kept looming like there would be some major weather but we kept getting only little bits of rainny drizzle. We drove right next to mount Shasta which was amazing to see, and we arrived in Klamath Falls at 5:30pm. We got the girls in our AMAZING condo and just as Adam was unloading the van he said the weather had suddenly dropped about 10 degrees. We had seen snow along the sides of road off and on since Redding, but there was no snow actually in Klamath Falls when we got there. Just as soon as Adam finished unloading the van, it started to snow, only a little at first, but then within a few minutes it was snowing heavily and it was sticking. The girls were soooo excited, Elaine is the only one who has ever actually seen snow, but it has been so long even she doesn't remember it. They were glued to the window watching the meadow behind our unit become a blanket of White. It really was kind of magical watching the excitement on their little faces.

The next morning Adam decided to go to Wal Mart to get a few basic food items (our condo had a nice little kitchen) and he took the three girls with him while Catcher and I slept in. He said the van was frozen shut and he had to warm it up before he could open the sliding doors :) The kids loved that the snow was still on the ground as it was still quite early. However as the day went on, after the sun had been up for a few hours, it melted the small amount of snow that had been on the ground. The girls were a little sad about that, but then Adam showed the the indoor swimming pool and their frowns quickly faded. We went to Wal Mart again later that day and bought swimming suits (only $7 each...can't beat that!) and Daddy took his three girls swimming in the indoor pool for several hours...they loved it!!

Wednesday felt like it came so fast, we really hadn't done much and it was already the middle of the week, so we got the kids up and dressed early and took them to play in the snow. We had to drive a little ways to find some but we found an amazing snow park. We originally were going to drive all the way to Crater Lake but when we happened upon this snow park we decided to just stop here and let the kids go nuts. It was a huge snow park that during the ON-season must be very popular as they even built an all season "warming" lodge. It had a wood burning stove inside and stacks of wood and paper for burning, there were picnic tables inside and we used some of the cardboard in the lodge as a sled outside in the snow. The girls wanted to build a snowman but the snow wasn't really that good for building anything, it was rather hard and brittle because it was mostly old snow, not fresh sticky powder. But at one point there had been a snow plow that plowed the parking lot which had made large mounds of snow that Adam stacked on top of each other to make an odd looking snow man. The kids liked it, Maggie made a big round nose for it. Elaine and Maggie loved to throw snow balls at Daddy, but he had much better aim and they loved running away from him. I don't think i've seen Adam laugh so hard as he did during their snow ball fight, it was great :) Katie wasn't so sure about snow. She wanted to play with everybody in it, but she didn't like the cold or the wet. Maggie LOVED the snow, in every way, she loved to run in it, sit in it, lay in it and especially to eat it. Elaine liked the typical parts of the snow, making snow angels and sledding, and making a snowman. Catcher and I pretty much stayed out of the snow, which wasn't hard because the parking lot was all clear of snow (and all clear of cars too) We did take Catcher out to get a family picture in the snow next to the lodge, it was hard to do with NO ONE else around to take the picture so we put the camera on a piece of cardboard on a snow hill to take the pic...it mostly worked.

Later that day we took the kids to see the movie How To Train your Dragon. The theater was small and there was only one other family in there, so Katie ran around in the theater a bit, but it kept her entertained while the rest of us enjoyed the movie. We didn't watch it in 3D becuase we didn't know how the kids would do with the glasses, plus it costs less to see it regular. Well i dont know that 3D would have made much of a different i LOVED it, it was very cute, and i think the kids liked it too.

Thursday was horse day. And it was COLD! the weather (since monday) had been rather nice, cold, but nice. Then thursday came and it was FREEZING literally. it was around 33 degrees but with the icy wind chill it was less that 30. We had reserved horse time at the Running Y's Ranch. Adam sent me on an hour and a half horse back ride and the kids got to pet the goats and pigs and the two older girls got to take short rides around the corral on the horses too. We put Catcher in a front carrier on Adam and he put a sweater and jacket over him, Catcher was toasty warm. Katie was a little afraid of the animals, she liked to look at them thru the fence but anything closer than that was a bit much for her. Elaine and Maggie enjoyed the animals. Maggie has some kind of animal magnetism, she draws all animals to her, i don't know how to explain it but she really has a way with them. Adam said as soon as they walked into the petting zoo all the animals just went right up to Maggie, and Maggie has no fear about it either, she loves animals as much as they love her. My horse back ride was beautiful but i don't think i've ever been colder in my life! It was a trail ride which usually means your horse puts his nose in the butt of the horse in front of you and you just go. It really does not require much horse knowledge other than how to sit on a saddle. Well i'd told the ranchers i had some experience riding, and they picked my horse accordingly. This horse would go slow and make a gap between him and the horse in front of him, then on a down hill he'd take off running. Luckily i felt pretty confident about it and just had fun. He also got too excited and close to the horse in front of him a few times, at which point that horse gave a swift kick and caused my horse to rear up, i just held on and smiled, it actually was kind of fun.

We had driven past a really neat looking park several times during our trips into town and the kids always wanted to stop but there were always sooo many kids that we really didn't want to stop. So Friday we decided to take them to this park. Turned out, the cold weather must have scared everyone away because we had the place to ourselves! It had a "snow shelter" for parents, which blocked the wind and made it quite comfortable for Catcher and i to sit and watch the kids go crazy. This park wasn't much larger than other parks but it had much more unique toys than most. Adam and the girls played hard. This park was right by Klamath Lake, which made for a beautiful view. We brought bubbles and the girls chased them around for a while, then we took a family picture in front of the lake and Adam and the girls threw rocks into the lake for a while.

>

The next day was departure day already. I couldn't believe how fast the week went. We didn't go there to do anything particular, just to get away as a family and have fun, and we did. I think there's a distinct possibility we'd go there again sometime.

Nothing exciting...just an update

Catcher will be 4 weeks tomorrow, and in a few days he'll be officially one month old. Wow the time goes by so fast! He is getting sooooo big. Last week i weighed him on a produce scale at the grocery store and he weighed over 7pounds, well since then he's gained at least a pound i'm sure, he's all round and chubby looking now, never would have known he was such an early baby. I mean technically he's still "negative" age, at the dr's office they adjust their age from their due date not from their actual birth date if they were that much early, then they judge progress based on the adjusted age. Catcher is an adjusted age of negative 2 weeks haha.

He had his newborn hearing screen redone and it passed fine after failing twice in the same ear when he was still at the hospital. I guess all that ear needed was a little time. The next step will be when it's time to get his vision checked because he was on such high oxygen levels early on, it can be very damaging to the tiny blood vessels in the eyes and effect vision. Katie had been on high oxygen when she was born too and while her vision took a little longer to normal out, it did, she (as far as dr's can tell) has no lasting visual problems, so hopefully Catcher won't either.

Adam is doing the medi-fast diet program, he says he's lost 12 pounds already, and it's obvious (to me anyway). He is doing amazingly well sticking to his diet and i'm so proud of that, when ever i start a diet i usually cheat by the next day (sad i know) and i'm glad to see him working so hard toward his goal...makes me think maybe i could too :)