Wordless Wednesday

They act like doggies ALL THE TIME. I can't seem to convince them that licking is gross. Yuck! Dog Germs!

Turn Around

We're home! And one day earlier than my estimation, which certainly makes life a little easier. It happened kind of suddenly. Most of yesterday I would have told you "no way" would she be coming home today. But last night she had a little turn around and was satting 98 while sleeping on oxygen, so John and I hatched a plan and I started turning her oxygen down a little at a time until I finally turned it off around 12:30am last night. I let the nurse know, and Holl was able to sleep all night on room air without dropping her sats too low. Today she is perky and back to herself, sounding pretty great, and once again we are all happy to be home.

Thanks for all the positive thoughts, well wishes, good vibes, prayers, and support!

Now back to our regularly scheduled program.

This Sucks

So, here's the scoop on Holland. Coughing started on Sunday night, but for the most part she was still eating, still sleeping, and still smiling, so after the first few days we really thought we had it beat, especially following Eden's fairly quick recovery.

Well, I obviously spoke too soon, and RSV has decided to put up a fight.

Eden was discharged on Tuesday morning and we got home around 12:30. Needless to say, it was a joyful reunion. I am not sure who was happier to see Eden...Holland or Zippo (our Beagle). But we had a great afternoon and evening playing, talking, and hanging out together. Nana and Papa dropped by during dinner (to drop off a second nebulizer), and the girls were being silly hams, pretending to be doggies and "walking" each other around on a leash. Holl was definitely coughing at this point, but nothing too alarming.

We thought we were home free after the girls had their breathing treatments and were tucked in bed, and we settled on the couch with a movie and a bottle of wine. That's when the coughing started in earnest. We must have still been in denial at this point, since we stopped the movie several times to chat, polished off the bottle, and didn't head to bed until 1am. We didn't get any sleep that night. She coughed pretty much all night to the point that she couldn't sleep and kept getting up, coming in our room, and calling for us. Around 3:30am we were up and debating about whether she needed to go to the hospital. It was kind of comical because even though she should have been exhausted and miserable, Holland was pretty chipper, and was being really funny. At one point she was showing us her "moves." She certainly didn't appear to be low on oxygen.

Around 4:30, it became unbearable...that feeling of sitting on the fence, so I just decided to take her to the ER. Our hospital has a pediatric ER that opens at 9, and I generally try to avoid taking them to the adult ER at all costs, but this had been going on so long I didn't think I could wait. So we packed up our bags, planning for a stay, and Holland and I headed out at about 5am. We got to the ER, she was satting 100 for about an hour, and they sent us home.

We got home around 7:30am, I gave both girls a treatment, and crashed into bed in the spare bedroom. My lovely husband got up with the girls, and let me sleep until after 1pm. When he woke me up I was delirious and had no idea what time it was! We had a previously scheduled appt with the pediatrician for Eden's follow-up at 2:30. Holland was clearly not doing well at this point, and John and I both could tell that her oxygen was definitely NOT 100 any longer. I called ahead and let them know I would be bringing both girls in. When we got to the office Holland's sats were sitting at 88-92, and didn't budge with a treatment, so we were sent straight to the ER for the second time, where we were promptly admitted.

So, at this point we've been here two nights. Yesterday evening her oxygen needs were increasing, and they bumped her to 1.5 liters. She is satting around 90-94 with that, mostly on the lower end. Her nasal cannula came off twice in the night and she immediately drops to around 85-88. Every time they have to increase her oxygen, I mentally add two days to our stay. With a standard stay being 4 days, and her Os being increased last night, I'd say we'll be here at least 6 days...putting us at maybe Monday if all goes well.

I was working myself into a tizzy during the night, thinking about all of this...the horror stories that I have heard about RSV and what if she is here for weeks and has to come home on oxygen, and what about preschool, and what about my job, and what the hell?????????????

I'm trying to stay positive. Yes, I absolutely adore my beautiful daughters. They are amazing, and adorable, super cute and cool, and they light up my life. I wouldn't trade them for the world.

But I shouldn't always feel the need to justify a little bit of negativity sometimes. Micro-prematurity sucks. It really does. I'm trying to get over it, I really am, but it just won't let me.

Second Verse

Same as the first.

Holland was admitted to the hospital today after a very long night last night. Will update more later.

Better Letters

Holland and Eden are kicking some serious RSV butt!

Our second night in the hospital was MUUUUCH better, and Eden was able to sleep all night on 1/4 liter of oxygen. I talked to the staff about minimizing distraction, and that helped a ton, but also she was just a lot more relaxed being familiar with the environment, and not having just suffered through the trauma of 5 attempts at an IV. We both got a lot more sleep and today was a great day. Eden ate tons of sweets...banana cake, brownies, chocolate cake, donuts, cookies...along with three decent meals. She also watched movies, read books, took a couple of trips to the fish tank down the hallway in her little manual wheelchair, colored, painted, and, as usual, charmed everyone she met. She was off oxygen all day, satting between 95 and 100. The only reason we're here tonight is to make sure that she can sleep all night without dipping too low. The plan is to go home in the morning!

Holland definitely has it (RSV) too, but is still handling it at home like a trooper. We started her on some steroids last night, so the evil terrorist behavior is setting in, but luckily we only have to make it through two more days of that and hopefully we'll be home free.

I have lived the past four years terrified of RSV, and for good reason. Even just a year ago we would have been in serious trouble. RSV is potentially fatal for preemies with crappy lungs. I feel very lucky that we made it this long without catching it, and I'll be happy if we never had to deal with it again. But at least now I know, that while we might have to spend a couple of nights in the hospital, we CAN beat it.

YMCA, now those are some better letters!




Thanks to our dear nurses, RTs, and techs for taking such good care of us once again. And special thanks to Kristi and Amy for being willing to do whatever it takes to make Eden happy, including being total goofballs, AND being willing to let me post it on the internet!!!

The Dreaded Letters

R
S
V

The three letters that every preemie parent lives in total fear of. I felt like I got socked in the stomach when the ER doctor told me.

So Eden has had a little runny nose off and on for about a week. Nothing I was worried about at all. She was still happy and eating fine, so I even sent her to school. The real trouble started on Wednesday night at bedtime. She started coughing and pretty much coughed all night. We started breathing treatments, and on Thursday I got her ready for school but she was still coughing through breakfast so I decided to keep her home. Around lunch time the cough was sounding really "juicy" so I called the doctor's office and got her an appointment at 5pm.

The doctor was concerned with how bad her lungs sounded, and she had fluid in one of her ears, so we started an antibiotic and got a lung xray. We made it through that night at home with John and I rotating treatments every 3+ hours around the clock. On Friday I called the office and found out that they did not think it looked like bacterial/aspiration pneumonia, but rather viral and/or reactive airway disease (asthma). We decided to continue with the antibiotic, and add an oral steroid. Friday night was more of the same, with treatments round the clock. Early in the day on Saturday she seemed to be holding her own, and we thought maybe she would turn the corner. Instead she got progressively worse as the day went on and just before dinner, when she wasn't even lasting 2 hours before needing another treatment, we decided we had to bite the bullet.

I was second guessing myself right up until we walked through the door because she fell asleep in the car and was breathing so nicely. I didn't want to wake her up. Then we got to triage and she was satting 97, which is good, so I was thinking "great, a $50 copay and they will just send us home!" And she continued to do pretty well for the first hour or so, but as time went on and she got more and more tired, her sats started dropping. They gave 5 albuterol treatments in 5 hours and she seemed to be getting worse instead of better, so they were going to admit us anyway...then the RSV test came back positive. Bummer.

I could write a whole post ranting about the FIVE ATTEMPTS it took to get an IV in, and how I seriously wanted to KILL somebody, but instead ended up breaking down in tears after trying really hard to keep it together.

Last night was miserable. Completely and totally flippin miserable. We didn't get to our room until 11:30pm, and Eden didn't get to sleep until midnight. She was completely exhausted. Then, EVERY SINGLE TIME somebody new came in the room and touched her she completely freaked out. They were coming in about every hour. She was inconsolable, screaming and crying, saying such things as "Mommy, it hurts me, I'm scared, and No, no, no I don't want it." It was sad, and scary, and miserable and nobody got ANY sleep. As I've said before, I HATE nighttime in the hospital.

Things are better now. Eden is much more relaxed now that we've had a chance to talk about it and check the place out. Her oxygen needs are really low during the day (we just weaned her down to a quarter liter and she's doing fine), but all hell breaks loose at night. I'm putting my money on a discharge around Wednesday. We'll see how it goes.

To top it off...as if all of this wasn't bad enough....John just texted me that Holland is coughing a lot and has a runny nose. We could very well end up with two kids in the hospital once again. Sigh.

I don't have my camera with me, so I'll post this one for myself...to remember how she looks when life is GOOD!