Sitting up on her own

All,

I'm busy working in the yard but am taking a break to post this video-- it may not look like much, but Madeleine spent nearly an hour today sittin gup on her own. She still needs the boppy around her for her hands but we don't really consider this cheating. Her therapist explained that children with Down's have extremely short limbs and with short arms, it is much harder for her to balance with her hands. The pillow is there so that she doesn't fall all the way over when she uses her arm for balance. Eventually, she'll be strong enough where it won't matter.

As you can see from the video, she is quite enthralled with Baby Einstein as well:

Outdoors Weekend

As you can see from the picture, Madeleine was fully prepared for the sun on Saturday morning when we started our yard work. The shades stayed on for about 3 more seconds before she deftly picked them off her face, stared at them for a while all the time, spinning them around in front of her face and then flung them to side in search of a new toy. Still-- they were good for a few laughs and a good picture. I've posted a few other pictures from the weekend and you can see them here.

I'm crunched for time this morning but I also thought you'd enjoy the video below. Kirsten explains how Madeleine struggled a bit when she was too warm and you'll enjoy the solution we came up with (as did Madeleine.) The best part: this movie was taken about 30 minutes after the fan was put in front of her. She smiled nearly every time it oscillated in front of her for over 45 minutes. Its tough not to feel spoiled when you have such a happy baby. Enjoy the movie:

Still Going Good

Kirsten, Madeleine and I had a wonderful holiday weekend and spent most of the time in our yard working on the borders and playing with Madeleine. I've been very busy at work (good busy) and have been playing with Madeleine and honestly haven't thought about the blog. We've got some great pictures and I'm going to try to post them tonight. However, we're extremely excited about the progress that Madeleine has made since surgery and we agree with our night nurse who called it the "miracly surgery." Madeleine is so much more comfortable without the tube in her nose and we're seeing progress every single day. We typically only have to suction 2-3 times/day-- prior to the surgery, it was common to suction 2-3 times/hour when Madeleine was active. Its just another sign on the progress that she's making.

That's all for now-- I'll provide pictures, hopefully a movie, and will lay out our schedule of doctor visits in the coming weeks. Take care and have a great short workweek!

What A Difference!

I took this picture this morning as Madeleine is still asleep. As you can see from the picture, she is resting very calmly and honestly, Kirsten and I are amazed by her quick recovery from surgery. What's even more amazing is that she isn't on any pain medicine right now as we were sent home with orders to give her tylenol only when she seems in pain.

Its still early to declare full victory but the surgery seems to be paying huge dividends in Madeleine's quality of life. Besides not having tape on her face-- a huge aesthetic upgrade-- we don't have to worry about her pulling out the feeding tube as the new tube is sutured in and is much harder to pull out. It also is less irritating and much easier to "hide" from Madeleine so it seems much less likely to attract her attention. While all of these benefits are great, the best benefit is that it appears to have greatly reduced the amount of mucus and secretions that need suctioning out of the trach. This is huge as prior to the surgery, it wasn't uncommon for us to suction upwards of 20 times/day. Besides being a pain for us, suctioning is uncomfortable for Madeleine and the secretions are a constant source of agitation. Its still too early to see any impact but we believe that this change will enable Madeleine's growth as she seems much more restful and should burn fewer calories dealing with the uncomfortable nature of the nasal tube.

That's all for now. We'll keep you posted with further updates but right now, know that we're exhaling quite a bit and are excited to have Madeleine back home.

Coming Home Today

Sorry for the lack of a post yesterday-- we thought a quick update had posted but obviously we were wrong. Regardless, Madeleine is doing great and we're pretty sure that she'll be released this afternoon. The only potential issue is that she's on a slightly higher oxygen percentage than we usually have at home but no one seems concerned about it right now. The assumption is that her belly is a little sore from the surgery and therefore, she's not breathing as deep so as not to agitate it.

That's it for now. I'm running late this morning but I'll post once we get her home. Have a great start to your week.

So far, so good

Madeleine is doing really well post-surgery and we're tracking three areas: pain management, vent settings, and progress with feeding. In terms of pain management, things are going very well. Since last evening, she's mostly been managed with tylenol- she had one dose of morphine before sleep and only one more dose this morning around 7am. Since that dose, she's only gotten tylenol and is generally happy. She is back to smiling and playing and we're very happy.

Her vent settings are also doing well. She is back to her home CPAP aetting, meaning that the she is breathing on her own with only pressure support from the vent. She's still slightly elevated on oxygen as her level is 50%. At home, she gets between 1 to 1.5 liters which is roughly equivalent to 30% oxygen. Once they get her down to 30%, they will transfer her off the hospital vent back to her home vent.

The final issue is her feeding and that is also going well. So far, she is getting half her fluids into her stomach and half in her IV. Soon, they will shut off the IV and will give all of her fluids via the new PEG(g-tube). They will also substitute half od the pedialyte with formula and will monitor her GI status. If all goes well, they will increase her formula level in the morningam

In short, things are going very well. We still have a long ways to go and we know that setbacks are possible. Still, we are very pleased with Madeleine's progress and we're enjoying seeing her face without tape. We'll provide an update tomorrow. Thanks!

Phew!

Madeleine is out of surgery and everything went great. The surgeon talked with us for quite a while and said that things couldn't have gone better. We're obviously elated.

In terms of recovery, Madeleine is in some pain and they are going to keep her fairly sedated tonight. So long as she recovers well, they will trial her with pedialyte tomorrow and then will slowly work her feeds up. So long as that goes well, we could be out as early as Monday. We always know that Madeleine could take a down turn but so far, things have gone exceedingly well.

Thanks- we'll post updates throughout the weekend. At some point we'll also get a camera in here so that we can post some pictures without tape on her face. She looks great but it is going to take some getting used to seeing her whole face.