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.

And the Winner is....

For those of you that guessed the 3+ times that Madeleine will pull out her feeding tube, pat yourself on your back as Madeleine just pulled her tube out this morning making it the fourth time in a week that we've had to take her to radiology-- before that we'd, gone exactly one month with the same tube... Argh. Its rather frustrating. Other than that, things are going well. I was home this morning to meet with the Physical/Occupational therapist and she continues to be impressed with Madeleine's progress. Madeleine has greatly improved her sitting ability-- a direct result of her increased core strength and she continues to improve with tummy time and her fine motor skills. Today, we noticed a pretty strong preference for her right hand so we talked about insisting when we play that she use her left hand. Additionally, we talked about the importance of short bursts of tummy time throughout the day-- especially once we get out of surgery and she's cleared to start working again-- and also talked about the importance of using certain words repeatedly when playing particular games. As one example, the therapist said that it is important to say "boo" or something like that every time we play peekabo as this teaches Madeleine when to communicate and what to say. Its very interesting and helpful to meet with the therapist as she takes our games and daily routines and teaches us how we can reinforce little concepts-- very helpful and cool.

That's all-- I'm working from home for a bit-- a great aspect of the new job-- and then will be taking her in for what we hope will be her last visit to radiology (at least for an NJ tube). Have a good one.

Brent

Family Photo

Quick post this morning-- we thought you'd enjoy this new "family photo" that we took this weekend to show our solidarity with Madeleine in her last week with the tape mustache. Surgery is still scheduled for this Friday and we're very nervous yet excited all at the same time. Have a great week!

Two New Tubes

We're one week away from the G-tube surgery and while we're always worried about surgery, we can't wait to get rid of the NJ tube-- Madeleine pulled it out onTuesday night and the replacement gave us trouble yesterday so we got it replaced last night. We used to call the radiology department and calmly asked for an appointment-- now I just call and say "This is Madeleine's dad-- when can I bring her in?"

Other than the tube drama, this week has been pretty normal. If the rain doesn't stop soon, I'm going to start building an ark in my garage but today so far is looking good. My mom and Aunt Donna are visiting as is Donna's daughter Liz. Its nice to have extra hands to play with Madeleine and its fun to see her smiling at all of the new faces. Madeleine continues to be extremely happy and she's slowly improving her sitting ability-- we think this is the next step before she will start to crawl etc. Its slow progress but progress all the same and we expect that progress will increase once we get through the surgery.

Oh yeah, the surgery is scheduled and this week, we got final approval to go forward. The important factor in moving forward was getting clearance from our cardiologist that her pulmonary hypertension is under control. We went to the hospital on Wednesday and the echocardiogram showed that Madeleine's PH is fully under control. She's not cured as she's still on medicine for the PH but the doctors are confident that she is ready for surgery and furthermore are confident that the PH is slowly improving. (There is no quick fix for PH so this is the best possible news.)

That's all for now-- I apologize for the lack of pictures. My new job is great but they are more restrictive on picture uploading than my past job and since I don't have a personal PC, i've got to figure out a method for uploading pictures and videos... I hope to find some time this weekend.

Battles with the Pulse Ox

Madeleine had another good weekend-- she was a bit slow/lethargic this weekend and we're chalking it up to a growth weekend as well as her reaction to the gloomy DC weather-- its been raining for about 3 days now and its forecast to continue until next Sunday. Ugh.

For the past few weeks, we've been having some trouble with Madeleine's oxygen saturation rate when she first falls asleep. During the day, the nurses only spot check her sat rate as it is impossible to keep the monitor on Madeleine when she's awake and moving. She kicks the thing off and loves playing with it as it has a bright red light when turned on. For a kid that can put her foot in her mouth (literally), the pulse ox is just too tempting-- she pulls it off in less than 3 seconds when awake. When she falls asleep, we usually take her into the crib and set her up for the night which includes turning on the pulse ox and for the past two weeks, we've seen extremely low sat rates-- in the 70s when we put her down. (Healthly folks are always above 95 and we don't like to see Madeleine below 90.) What's strange is that when the machine reads in the 70s, Madeleine looks fine. We've been trained to "look at the child" but we've also been trained that the machines can pick up data that the naked eye can't see. Inevitably, Kirsten and I have worked frantically each night to improve Madeleine's sat rates-- we suction, we turn her on her side, we increase the oxygen, when especially desperate-- we change the trach, we hold and rock her, and many times we bicker with each other-- its just kinda how we react when nervous and don't know what to do.

Finally, Kirsten took Madeleine to the pulmonary clinic on Friday-- we had a schedule visit with the GI clinic and we learned that the pulse ox machine wasn't reading correctly. Our home machine was reading in the low 80s when they arrived at the hospital but the hospital monitor showed a perfect 100 sat rate. I can't tell you how frustrating that is to know that we've spent so many nights worrying about something that looks to be a machine error. We ended up getting a new machine over the weekend and while it still isn't perfect, its giving us better readings.

The other two things we focused on this weekend is resolving Madeleine's runny nose issues and also discussing what she's going to look like without her "tape mustache." We're less than two weeks away from surgery to remove the NJ tube and replace with the G tube and we can't wait to see her without the tape on her face. In her 13 months alive, we've only seen her without tape at her birth and at the random times when she pulls out her tube. (FYI-- since posting the survey, we haven't had to go back to the hospital for a new tube... keep your fingers crossed that the streak remains intact for the next 11 days.) The runny nose is a bit more problematic-- we have been concerned that Madeleine was fighting a cold for the past few weeks as she's had a runny nose for weeks but every test we've done has come back negative. The doctors don't think Madeleine could have full blown allergies-- it takes a few years to develop allergies-- but right now we're chalking the extra snot up to "seasonal sensitivities." I'm not sure how this differs from allergies-- I'm sure there is some clinical difference-- but the end result is that Madeleine has a snotty nose and needs to be suctioned quite a bit.

As far as life for Kirsten and I, we're doing really well. I've completed my first week in my new job and so far, everything is great. I'm doing some pretty cool work (google 287(g) to find out about the program I'm working on-- note: its fairly controversial) and the folks I work with are really great. Kirsten continues to do great at her job-- wouldn't expect any less-- and we're even starting to talk about taking a vacation at the end of the summer/early fall. Its been so long since we even discussed something like that, it almost seems taboo...

alright-- gotta run. have a great week and if in DC, try to stay dry.

That's all for right now.