Tuesday, March 30, 2010

First Day at Daycare

Today is Claire's first day with her new babysitter.  I've been back to work for 5 or 6 days, but Claire has always stayed with Darren or Mimi, and today will be completely different for her.  She'll be with a new person, in a new house, with another baby around, and I have no doubt she'll be fine.  It's me that's going to worry!

Our babysitter, Sharon,  is wonderful.  She's an older lady and she has tons of experience, both with her own kids, grand kids and all the other babies she's watched.  She only watches one other baby, so she should have lots of time to spend with both of them.  I am very comfortable with her, but I really hate leaving Claire. 

One thing I am very excited about is Sharon's willingness to learn about DS.  Sharon is very good friends with our neighbor (who was a nurse), and she has been educating her and answering her questions.  I brought a copy of Babies with Down Syndrome to her today, and she was excited to have some reliable information to read.  I also told her to ask me anything at all, and I would share with her what I know, or find an answer for her.  I'm hoping she takes me up on this, and we can learn together!

Saturday, March 27, 2010

A Balancing Act

I have a situation that is kind of bothering me, and I need to get it all out on "paper" to help me sort out my feelings. 

I work in a small office.  There are only 6 of us.  I've worked here for 10 years, go to church with some of my co-workers, and consider others very good friends.  We found out about Claire's heart defect when I was 29 weeks pregnant, and thus the 50/50 odds of her having DS. I told everyone what was going on.  I also emailed extended family, and friends that didn't live close by.  Part of my reason for doing this was because I wanted to give everyone, me included, time to adjust.  I didn't want to hear "I'm sorry" if the diagnosis was confirmed.  I didn't want anyone feeling sorry for us. 

Fast forward to Claire's arrival...and the confirmation that she has DS.  I emailed friends and family to tell them the wonderful news.  That Claire was here, perfect and beautiful, and sporting an extra chromosome.  The outpouring of love and prayers was immediate.  I never heard "I'm sorry", and I hope nobody thought it. 

I am Claire's voice right now.  I am constantly reading and researching, trying to keep up with therapy, and make sure she has every advantage we can give her.  I feel like I am constantly thinking about Down syndrome, not always in a worried way, more like I just need to be prepared.  I'll read something interesting in an article or blog, and will often find myself saying "babies with Down syndrome....".  DS is always in my thoughts.

What has me bothered, is that except for one friend, I don't know that Darren has ever said "my daughter has Down syndrome".  Nobody he works with knows.  They knew there was a possibility.  They know we had lots of  doctor appointments, and the know about her heart defect.  But they don't know she has DS.  Claire has been by his job and met the girls in the office, but at this age they couldn't tell.  I worry that people will think he's ashamed of her because he didn't mention her DS.  He's not ashamed of her, not even remotely, but I worry that's what people will think. 

After I get all this out, I wonder if my discomfort is jealousy.  There are times when DS is all consuming for me.  It's all I can think about, and it doesn't seem to be this way for Darren.  I can pretty much guarantee that while Darren's at work he's not thinking about if we should be doing more therapy with her or not.  I guess what this means is that I need to pray for balance.  I need to do what is best for my daughter, while not letting therapy and general DS worries interfere with my time and enjoyment of just being her mommy.

Tuesday, March 23, 2010

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...

Friday, March 19, 2010

A Birth Story

Nope, not mine. I still haven't written mine up yet, even though I have a blank post ready when I finally get around to it...

This birth story was written by a mom who had her second baby just a few days after Claire was born. The main difference between her story and ours, was that we had a very good idea that Claire would have DS. This mom didn't have any idea, and her birth story is one that will pull on your heart and probably make you cry. I bawled like a baby while reading it for the first time, and even thinking about it now bring tears to my eyes.

She writes very honestly about the emotions and fears in the first few days following the diagnosis, and it may not all be flattering, but it is real. As much as I love Claire, and as much as I know I can handle whatever comes our way, there are days that I don't want to have to handle it. I don't want Claire to struggle, I don't want to her to have to work so hard for what comes so easily to others. But I know that we will be ok, more than ok, and now that I'm crying again, I'm going to go kiss my baby and spend some time just loving her.

Thursday, March 18, 2010

Wordless Wednesday (on Thursday)

I had a really cute outfit picked out for Claire to come home in, but I was so excited to finally be getting out of the hospital that I completely forgot to change her.

Bath time in the hospital

Hanging out at home

Sunday, March 14, 2010

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!

Thursday, March 11, 2010

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...

Tuesday, March 9, 2010


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.

Friday, March 5, 2010

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.

Thursday, March 4, 2010


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.

Wednesday, March 3, 2010

Wordless Wednesday

I'm not a huge fan of the IV in the head, but Claire is taking her bottle well so they haven't had to use it. I'm still optimistic that we may be out of here by the end of the week!

Tuesday, March 2, 2010

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!

Monday, March 1, 2010

...and Birth Story

Today is Nov 13, and my little girl is 10 months old.  If you check out the date stamp above, you'll notice that I meant to write this post quite some time ago.  I figure I've procrastinated long enough.  I didn't put it off because I didn't want to write it, but more because I knew it was going to take a while...

On January 12, I worked in the morning and then left to pick up Darren.  We headed to the doctor for our last growth scan before meeting our little one.  The doctor wanted to have one final appointment to check her out, and then we would schedule our induction date.  Our two and a half hour drive to the doctor was uneventful, and when we got there it was just a short wait until we were brought to the u/s room.  We'd had this tech before (she was the one who first noticed that something didn't look right with Claire's heart), and we chatted with her as she got started. 

I was watching the measurements, but my head must have been a little foggy that day.  The tech said that she was measuring behind, and I kind of brushed her off saying that her arm and leg measurements were always 1-2 weeks behind.  She said she knew that, but that today ALL of her measurements were coming up between 33-34 weeks, and that I was 37 weeks along.  And all I could think to say was, oh that's not good!  The doctors knew that the blood flow through her cord was restricted, but since we'd made it this far in the pregnancy with no growth restriction, I thought we were home free.  Darren and I exchanged an uneasy look once the tech left the room.

We were joined by the doctor.  We'd seen her quite a few times by now, and she was one of our favorites in the practice.  She did a quick u/s, checked the measurements and said 'lets go have a baby'.  Even though I knew she was going to say that, there was a moment of stunned silence.  I asked her if it was possible for us to go home and come back in the morning.  I wasn't prepared to have a baby that day.  Things weren't cleaned up at work, we had no clothes, no diaper bag, no car seat.  We were not prepared at all.  She said, no, that with the baby's measurements she was telling us she needed to be born, and that she wouldn't forgive herself if anything happened to her if we went home.

We had a general idea of where the hospital was, but the u/s tech got us directions as the doctor called the hospital to let them know we were on our way.  Once we got in the car we started making all of our phone calls.  We called our parents and friends, who were waiting to hear when our induction date would be.  Instead, we got to tell them all we were heading to the hospital to have a baby.  My heart was racing, my palms were sweating and I'm pretty sure my voice was shaky.  I was both excited and very nervous.  Nervous to be induced, nervous for labor and nervous to meet our baby. 

Google's directions failed us, and it took us almost two hours to get to the hospital.  As we drove in circles, we joked that it was a good thing I wasn't in labor or I would be having a panic attack by this point.  We made it to the hospital, went upstairs and the nurses got us settled into a room.  A doctor, one I hadn't met before, stopped by briefly to confirm that I did want to be induced, instead of heading right for a c section.  I told her that was correct, no c section unless I had to.

As the nurses were getting everything ready for the induction, we told them that we were pretty sure that our baby had Ds.  We told them that she was loved and wanted, and we wanted our delivery to be a happy event.  The nurse didn't really say much, just a quick acknowledgement as she did her job.  I was a little put out that she didn't seem to be on the same page as us, but the nerves for what was coming outweighed my irritation.

The nurses got an IV in and started me on Pitocin.  The baby was still high and I wasn't dilated at all.  They wanted to make sure she could tolerate contractions before they gave me anything to help me dilate.  By this time my mom and dad had arrived.  The Pit dose was increased every 15 minutes, and even though I had no pain at all with the contractions, the nurse was calling them moderate.  At about 10pm the doctor said we'd given the baby enough time to show distress,and since she didn't, she could tolerate labor.  By now I was starving as I hadn't eaten since breakfast.  They wouldn't give me anything to eat earlier in case I'd needed a c section right away.   The basic sandwich I got for dinner had never tasted so good!

My parents left and we waited for the nurses to come back with the stuff for my cervix.  They finally got back with it a little before midnight, and we settled in for some sleep.  A half an hour later the room filled with people.  I hadn't been asleep for too long and was very out of it at first.  Two nurses were helping me sit up and roll over, a third was giving me meds in the IV and the fourth was calling the doctor.  Claire's heart rate had dropped into the 50s and they were trying to reposition me and get it back up.  The med they gave me made me shiver uncontrollably, and between that and the nerves, I was a trembling, crying mess.  I was terrified that we were going to lose her, but they were able to get her heart rate back up and stabilized.  Since she was stable the dr decided to wait until morning to try anything new.

Needless to say, we didn't sleep much after that.  I stayed on my side, watching the monitor, and barely moved all night.  I don't think I slept more than about ten minutes.  I just couldn't take my eyes off her heart rate monitor.  In the morning, she wasn't any lower and I still wasn't dilated.  They gave me a small dose of Pit, much less than I'd had the night before, but her heart rate dropped again.  It was obvious by then that the induction wasn't going to work, so they put us in line for a c section.  At this point her heart rate was stable, but I really just wanted to get her out, where I could actually see what was happening with her. 

It was finally our turn for surgery.  We had a plan worked out that Darren would be in the OR with me for the surgery. Once she was born, he would stay with her, and my mom would join me in the OR and in recovery.  We reminded the drs that even with all of our ultrasounds, we STILL didn't know our baby's gender, and I wanted Darren to be the one to tell me. 

We got to the OR, and between the cold room and my nerves I was shaking.  The NICU team was there waiting.  The dr got the epidural in, they got my nausea under control and then we were ready for surgery.  I don't have any idea how long the surgery actually took, but I don't think it was too long.

And then, the baby was out.  Darren, through his tears, said it was a girl, it was our little Claire.  She was crying, Darren was crying, and so was I.  They held her up so that I could see her, and then took her to the NICU team so she could be checked out.  And all I could think about  was the fact that I was sure she was going to be a boy.  I didn't know what I was going to do with a girl!

Darren was with the NICU team as the were looking Claire over, and I heard "babies with Down syndrome...".  And even though we pretty much already knew, I hated that the confirmation came while I was still on the operating table, without any anybody by my side, and before I'd even held her.  When they brought her to me, I looked at her sweet face and loved her, but I was also looking for Ds.  And I just couldn't really tell one way or the other.  She didn't look any different to me than any other new baby.  I do remember thinking her thumb looked a little funny, but I couldn't pin down what was different about it.  Since it looks totally fine today, I think it was just stress.

Claire and Darren went to the NICU, and my mom came into the OR while they finished the surgery and took me to recovery.  The worst part of the c section was that my baby was finally here, and I couldn't be with her.  I got the shakes in recovery, and even though I was exhausted from no sleep the night before, I just couldn't doze off. We finally made it to our room upstairs, and started getting visitors.  Darren's parents, my parents, my sister and our pastor all filled the small room.

Finally, around 6 pm (Claire was born at 10:24 am) I was able to go down to the NICU and spend some time with my girl.  My best friend and her husband had just arrived with our clothes and car seat, so Darren took me to the NICU, and then went back to our room to visit with them.  I was able to spend an hour with my girl, just drinking her in.  Talking to her, loving her.  And that alone time was the perfect ending to a hectic, nerve-wracking, but also a most amazing, wonderful day.