Seven Snippets Fridays, #5

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Claire is making an appearance on her friend Wyatt's blog today.  Wyatt is celebrating February with a whole month of Valentines!

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My headaches have subsided and for that I am extremely grateful. Things are slowly coming together.  A load of laundry for baby is done, so s/he will have at least a couple of options other than blankets.  The car seat has been located, though not installed in the car.  The taxes are almost done, with maybe an hour or two of fine tuning this weekend.  The only pressing issue continues to be the piles on my desk at work.  I've come to the realization that there are just going to be some things I have to pass off to others.

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I'm sure most of you know Courtney and the Squibs, but if you don't, you MUST visit her blog.  She is the inspiration behind many of the half finished projects I have for Claire all over the house.  But more than that, she inspires me.  Her post Getting to Integral is what I want for Claire.  Claire has jobs where she is integral (she is the drawer closer in the kitchen, and the best trash-thrower-awayer ever), but I've realized this needs to be a continual and evolving process, for both our kids.

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I've started packing my bags, both for the hospital and for the possibility we end up staying with Darren's parents for a while.  Packing for 3 people (Darren's on his own), for an undetermined length of time is hard.  In true procrastinator fashion, that means I've hit a wall after packing a few toiletries, a blanket for baby and some of Claire's silverware.

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Darren is under the impression that we have decided on both a girl and boy name.

He's wrong.

I'm still not sure on the boy name, just as I wasn't with Claire.  Makes me kind of hope for a girl.  At least the kid will have a name!

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If baby doesn't make his appearance on my schedule, and we end up living at the farm for a while, our internet access will be SEVERELY LIMITED.  There is no internet at the farm, and I'm not sure if there is wi-fi in the surrounding towns.  I may have to do a bit of traveling to get online. Because of that, first news of baby will probably be on Facebook. At least I have access to that on my phone.

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Claire at about 2 months old.  She was still on O2 while sleeping after her bout with RSV.

For more Seven Snippets, visit Bringing the Sunshine!

2 Month Appt and Back to Work

Clarie had her 2 month well baby appt yesterday. I was a little concerned about how much she's been eating lately (not too much), but her weight gain proved I shouldn't worry so much. She is up to 9 lbs, 2 oz and gained 6 oz in a week, which is right on track. She had her first set of vaccines yesterday, and seemed to tolerate them well. I did decide to go with a delayed schedule, so she only got 2 yesterday instead of the standard 4.

I think Claire is officially over the RSV. She is back to her smiling, feisty self and off the oxygen! It's so nice not to have to work around tubes anymore. We've still had her on the monitor for the past few nights, but I think we can probably stop doing that too.

I'm at work today and kind of consider this my first day back. I worked a full day last Friday, but Darren kept Claire. Today is the first day that I've ever left her with anyone besides him. Mimi (my mom) is on spring break and is hanging out with baby girl today and tomorrow. I know they will have a great time together, but I am already watching the clock trying to decide if enough time has passed that I can call and check on them...

2 Months and Home!

I had this entire post written in my head for today about all the things I was tired of with this hospitalization (including motion operated sinks and cafeteria pizza). But instead, I am so happy to report that yesterday, on Claire's 2 month birthday, she was finally released from the hospital!

Her O2 levels still dropped off pretty quickly on a room air challenge, but we were finally able to convince the Drs that they weren't really doing anything that we couldn't do at home, and they agreed to send her home on O2 and a pulse ox monitor. All of her cords are taking a little time to get used to, but it's totally worth it to be home.

I'll stay with Claire this week and will work from home. Next week I hope to make it into work all 3 days with mom and Darren keeping her while I'm gone. Even though there is only one other baby at her daycare, I'd like to keep her home until her cough is completely gone and she's off the O2. We've already been able to decrease her O2 since she's been home (lower elevation?) so I hope the cumbersome tanks will be gone before too long.

More pictures coming soon!

Not Today

It still amazes me how my baby's smile can make a bad day so much better...

When I got up today I actually thought we might go home. Now, I think we will probably be here until the beginning of next week. Yesterday, Claire did very well on her room air challenge while awake. Over night they were able to decrease her O2 again. But this morning her room air challenge while sleeping went really badly. The nurse did one around 5 am and the Dr did one around 9 am. Both times she dropped pretty fast, and was into the high 50s when they got the O2 back on her one time.

The Dr was surprised that she was still dropping as far as she is, as fast as she is since her lungs sound pretty clear. She called Cardio to come check her out, and he said he doesn't see or hear anything that would indicate any major changes in her heart. Today was supposed to be Claire's two month cardiac follow up appt, and since we missed this they are going to echo her tomorrow. Her Dr also mentioned that if Cardio doesn't find anything they may do a sleep study on her to see if she has any apnea, even though the monitor isn't indicating any at this point.

So, basically what it boils down to at this point is that Claire is just slow to recover...

Forever

It's starting to feel like we are never going to get out of here...I think Claire is doing better, but just not enough to come home yet. Her levels drop as soon as she is taken off the O2, but not as fast. Hopefully this means we are moving in the right direction.

A few days ago they gave her a diuretic to try to get some of the fluid and congestion out of her. The day after this, we were able to turn her O2 down some. They are going to try giving her another dose tonight and see if it helps again. The Drs also put her on antibiotics. She doesn't have pneumonia, but just in case there is an infection this will get rid of it.

Thank you all for your emails, comments and visits to the hospital. If I haven't emailed you back yet, I apologize, and will try to soon. This hospitalization has been much harder on me than when she was born. Last time, Darren was with me constantly and I didn't realize how much that kept my spirits up. I know I am far from alone, but stuck here it's sometimes hard to remember that.

Hopefully tomorrow will be better. I still have my fingers crossed that we'll be out of here by Claire's 2 month birthday on Saturday.

IV Free

Claire is now IV free! It was pretty much just hanging on by the tape in her hair so I had them take it out. She is doing pretty well, but we've had to keep bumping her O2 up over the past couple of days to keep her levels around 90. She still isn't on much, but every time we move it up she's a little further away from going home. I'm still hoping for Sunday, but it may be Monday. Sorry for the poor picture quality, but I have to use my phone.



Tomorrow I'll get out of the hospital for a while. Jake heads back to CA on Monday for his infantry training, so I'm meeting them at the zoo to hang out with them before he leaves again. We had this planned before Claire got sick and I'm really bummed that we won't be able to take her like we wanted to.

That's one of the hardest things for me with her being sick...we were soooo careful to keep her away from sick people, were hand washing fanatics, and hardly took her anywhere. And yet here we are. I want to be able to take her places and do things with her, and I feel like we don't get to do that. I know this is a bad time of year, and she won't be quite as fragile after she heals from her surgery, but I feel like she's already missing out.

Darren is feeling better, but he still has a terrible cough. He came in for quite a while today and hung out with us though. He'll come back in tomorrow and stay with Claire while I go to the zoo.
I may have the day care situation worked out. I hate to be too happy about it for fear I'll jinx it, but if it works, it will be close to perfect!

I met the cutest little boy today. He was cruising around the floor in a red wagon. Every time his mom would ask him if he'd had enough he'd sign 'more' and off they'd go again for another lap. He had his heart surgery (for a slightly different defect than Claire's) a couple of months ago, and is back because he got RSV then a secondary infection. I talked with his mom a bit about his signing and his surgery. When I said goodbye to them, she asked if Claire had DS. I said yes and she got a huge smile on her face and said I was so lucky.

I really needed that today. The uncertainty of DS still scares the crap out of me. I needed to meet this mom who is thrilled that her boy is starting to talk at 3. I need to remember that Claire will do all the things that other kids will do, just on her own timeline, and to enjoy the slower pace. It is truly a blessing that I met this beautiful little boy and I hope I get to spend some more time with him. His wonderful smile was exactly what I needed.

Ugh!

Today was one of those days that I am just glad is over...I'm tired and frustrated and so ready to go home. I know things will be better tomorrow, but I'm tired of crying today.

My day started by running into the R word on a book blog that I frequent. It was a picture that was a parody of the inspirational posters you see a lot in offices. I emailed the gal and told her I thought her post was in poor taste and hurtful. She removed the post and we ended up having a great email conversation, but it just kind of set the tone for my day.

Darren is still sick. This morning he was running a fever and I told him he needed to get to the dr. They said it's just a virus and gave him some cough medicine to help him feel better. He's staying home again tomorrow to hopefully feel better. He hasn't really been to the hospital since Claire has been here since he's sick, which I totally agree with, but it also means that I don't get much of a break. I know the nurses keep an eye on her, but I really hate to go too far in case she needs me. This makes me awfully thankful that I'm not a single mother.

On the daycare front, I got a text from our gal that she isn't going to be able to watch Claire after all. She has some liver issues and got sick a couple of weeks ago. Her dr advised her to take it easy so she doesn't get sick again. I know she needs to do what's best for her, and if she's not healthy I don't want her around my baby, but it just puts me in a bad spot since I was supposed to start back to work this week.



On the good side, I think Claire is finally feeling a little better. She is still breathing hard and her cough sounds terrible, but she was awake more today and actually quite smiley. She also has this adorable habit of sighing while she eats, and she was sighing again today. She hasn't lost much weight since she's been in the hospital and is up to 8 lb, 10 oz! I am still hopeful she might be released tomorrow. I tried to get a picture of her smile, but she wouldn't cooperate.

In the Hospital

5 weeks after Claire was discharged after being born she is back in the hospital with RSV. We had been so careful with keeping her away from sick people, washing and sanitizing hands, and yet she still got sick. I got a cough on Thursday, Claire had it by Saturday and by Monday (yesterday) she was back in the hospital.

We took her in to her Drs office yesterday and when they initially checked her O2 level it was in the 70s. They of course didn't like that and shipped her over to the ER. Her sats came up to the low 90s with O2, but by this time they had called for a transport crew to send her back to Denver. Our small hospital doesn't have the cardiology support, should she need it, so I was fine with sending her to Denver, but I thought a helicopter transport was a bit excessive. I was able to ride with her in the helicopter, which was cool, but I still wish we weren't back in the hospital.

She has had her cough for 4 days now and the pediatrician said day 5 of RSV is usually the worse. The Dr wants to get her out of the hospital asap so she doesn't catch anything else, but she must be able to keep her O2 above 80 on room air. If she can do this, they will send her home on oxygen. We did a quick test while she was sleeping this morning to see how she was doing, and without the O2 she was below 80 within about a minute.

I think she will be in the hospital for a couple more days at least, but I'm still hopeful that we may be home by the end of the week!