Sitting Pretty and Cardio Update

Before Claire's OHS we tried to use her Bumbo a couple of times and it just didn't work.  She didn't have the trunk strength even though she had the desire to sit.  We were only able to put her in the chair for a few seconds before she leaned forward and became a big ball of baby.  Now, a month later, it's a whole different story!

Claire has been trying to sit up for so long.  She refuses to lay flat, and always has her head up and abs flexed.  We tried the Bumbo again last night and she loved it.  She could sit up, look around and play with her toys.

Yesterday, we had Claire's one month OHS followup.  The Dr did another echo, and while they can see some minor leakage with the valves, they can't hear a murmur.  She has a normally functioning heart and no restrictions at all!  We are so thankful to have her surgery behind us and are praising God that her repair is perfect.

And, just a final couple of pictures because her expressions just make me laugh!

12 Days After OHS...

Claire has decided she's ready for tummy time!  She doesn't roll off her belly very well, so I only let her stay on her tummy for short periods, but she loves not being stuck on her back all the time.

Sorry for the long absence, the 2 days in the PICU with NO sleep took longer to get over than I thought they would.  Clarie is doing fabulous.  She's got a ton more energy (which mean shorter naps...) but she is also eating better.  She can finish a bottle much faster, and is usually eating more and more frequently.  Her incision is healing beautifully and we'll be be ready to head to the pool to check out the splash park soon.

We had a cardio follow up and echo on Thursday and the Dr said her repair looked beautiful.  Right after surgery they thought they saw a very small VSD, but on last week's echo they couldn't see it at all.  So, either it was never there to begin with, or else it already healed closed.  Claire is still on O2 while she sleeps, but I'm hoping her levels are better at her check up next week and we can get rid of the extra tubes!

I loved spending last week with Claire, but am ready to get back into the office for a couple of days this week.  I'm not so good at this working from home thing....

Overwhelmed, Well Baby and Vision

This has been one of those weeks where I can't seem to get anything done.  I have so many things going at once (work, home, Claire) that I don't seem to be taking care of any of them well.  Claire's upcoming open heart surgery (OHS) doesn't help either.  I've been calling the hospital and the surgeon's office with tons of questions I as try to work out the logistics of being away from home for a couple of weeks.  The stress of the surgery itself isn't helping either.

Claire's 4 month well baby appointment today was great.  I just LOVE her doctor. He is close to our age with young kids of his own, and I love that he doesn't make me feel rushed at our appointments.  He is also open to learning more about the best way to treat anything that may come up with Claire, and even thanked me today for allowing him to take care of her!  I passed on the info for an online class on Down Syndrome: Healthcare Updates for the Primary Care Pediatrician and he was excited for the opportunity to learn more.

Claire's growth is wonderful.  She is 11 lb 8 oz and 23 inches.  She got one shot and one oral vaccine today and did worse with the oral med.  She was asleep when the nurse came in and startled her and it put her in a grouchy mood!


This afternoon Claire had a play based vision screening.  She really favors her right side, and we wanted to have her eyes checked out to see if that was the cause.  Her eyes show a nystagmus, which is a jerky movement in her eye when she focuses to the left, which is her weak side.  While it explains why she almost always looks to the right, we'll have to wait until after the OHS to have her eyes tested by a doctor.
 
I was hoping to have some pictures to add to this post, but I haven't cleaned my camera out in so long that my memory card is full.  It's just one more thing I haven't gotten to lately...

Surgery Date Set

Last Wednesday we took Claire for her monthly cardiology check up.  They did an echo and a chest xray and found that her heart was a little enlarged and there was some extra pressure in her lungs.  Both of these are expected with her heart defect, but the Dr also said it was an indication that we need to get her surgery scheduled.  He presented her case to the surgeons Tuesday and yesterday they called with a surgery date. 

Pre-op is June 8 and surgery is on June 9.

I know that this surgery needs to happen and I know she will have more energy afterwards, but I just hate that she has to go through this.  She has been doing so great with her PT, and her head control gets better everyday.  It bums me out that we have to stop working on her tummy time for 6-8 weeks after the surgery.

At the same time, I'm glad just to get this over with.  The surgery has been hanging over us for about 6 months now, and I'm glad just to finally have a date. It's good to know that after June 9 we can focus on her recovery, and not have to worry quite as much about every little cold or cough.

Right now, I'm not too worried about the surgery.  I know that it will seem more real as the date gets closer, but first we have some fun family things coming up.  Jake (my brother) will be home from his Marine training at the end of the month.  He has a few days at home, and will be having his wedding, before he and his wife and kids pack up and move to San Diego.  I'm so excited to see him and am thrilled that Claire's surgery didn't conflict with the wedding.

Rolling!

Claire has been so close to rolling for a couple of weeks now, and two nights ago she rolled from back to belly, and than to her back again! She wouldn't repeat the roll for her dad then, but by today she's rolling from back to belly all the time. She's only working on rolling in one direction, so we're working on the other way now, and working on getting from belly to back. Once she makes it to her belly she gets mad.  It's so much fun to have her doing new things, but it also means she's getting so big!

Claire has been really talkative lately.  She's babbled and cooed to us for a while, but now she has started talking to her toys too.  The toys on her swing and car seat get quite an earful!  I love hearing all her noises.

Lots of people keep asking about surgery updates, and unfortunately I don't know anything more right now.  We were supposed to go to cardiology in 2 weeks, but I've bumped Claire's appointment up to next week, as her coloring hasn't been quite as good lately. Right now it looks it will be May to the beginning of June.  This is the same time frame as Jake's wedding, so we are trying to make both work.  Jake should get his orders soon, and depending on where he is stationed and his leave, and that will help with the timing of everything.

Appointments

Claire was supposed to have her three month cardiology appointment yesterday, but it was cancelled due to a scheduling conflict.  The cardiologist is comfortable waiting until next month to see her, and I am still trying to decide if I am comfortable waiting that long.  She is doing very well, so I think it will be fine.  She's happy and eating well.  She's not struggling to breathe and is gaining weight, so I'm inclined to wait.  I think going to Denver with her by myself would be hard logistically with feedings and pumping, and I'd like to avoid it unless it's necessary.

We met with the nutritionist yesterday, and the OT today.  We checked Claire's weight and length and she is growing right along.  She is 10 lb, 4 oz and 22 inches, which is between the 50th and 75th percentiles on the girls with DS chart.  I'm thrilled with her weight gain (almost an ounce a day!) and that's one reason I think waiting to meet with cardio is ok. 

Her OT appt today was at her baby sitter's, and I think it was helpful for Sharon to see some of the things we do with Claire.  None of the "exercises" is all that different than you would do with a typical baby, but I think it's helpful just to have them demonstrated.

This weekend will be full of traveling to the grandparents, and I'm hoping I don't forget anything.  I'm also having Claire's three month pictures taken while I'm there, so new pictures next week!

Hope you all have a great weekend!

Dr appts and daycare

I look pretty tired in this picture of us from Valentine's Day, but I don't have very many of Claire and I. I always seem to be behind the camera, so this one will have to do for now.

Claire had her one month well baby check up and her one month cardiology appointment last week. Both appointments went very well. She weighs 7 lb 1 oz and both doctors were very happy with her weight gain. The cardiologist echo'ed her heart and said it looks great. There isn't any enlargement at all. He said he won't echo her next month, but will do a chest x-ray instead to make sure her lungs still look good. They will continue to monitor her growth, but at this point the Dr is optimistic that we can push her surgery back to 4-5 months of age if her weight gain continues at this same rate.

On the daycare front we found a great situation for Claire. The gal we found recently left her job and has been staying home. Her kids are older (middle school and high school) and she wanted to have a baby around again. She was initially looking for a couple of kids, but when we explained Claire's heart condition she was fine with just taking her. We spent 2 hours at Carmen's house getting to know her and she was great with Claire. She has a beautiful and spotlessly clean house and is reasonably priced. We feel *very* blessed to have found her!