But I don't wanna go to sleep

We've started a new routine this week with Madeleine of reading in the chair next to her bed and then putting her down immediately after reading. (we usually finish with Goodnight Moon-- that's such a great book.) In the past we've read some nights and others we've just spent time playing or rocking until she falls asleep. It is nice to have her fall asleep against you (okay-- its better than nice, its really awesome) but Madeleine is getting to the point that she can fight off sleep for hours and all that ends up doing is throwing everyone's routine off.

In any case, we finished reading tonight and I laid her down in her crib. Prior to reading, I had changed her diaper with her lying in the crib. I can't remember if I've mentioned but due to Madeleine's lack of a large intestines, her stool (still my favorite parent word) is rather watery and requires a strict policy of Ilex paste (a thick paste) against her skin and then a second layer of vaseline to cover the Ilex paste. (Yes, we go through a LOT of vaseline every week... I've gotten some strange stares at the drug store.)

In any case, I was cleaning in the kitchen and heard Madeleine banging around in her crib-- when she doesn't want to go to sleep, she sits up and usually plays with the suction machine or any other cord that she can get her hand on. I planned on giving her a few minutes in the dark before I went back in to lay her down when all of a sudden, I heard her crying frantically. I immediately went into the room as Madeleine rarely crys and when I turned on the light, her face shone back at me. I didn't think to take a picture but it became immediately clear that she had taken the top off the vaseleine tub that I'd left in the crib and had smeared vaseline all over her face. She wasn't very happy when I rubbed it off but that wore off as soon as I stopped scrubbing. I laid her back down once she calmed down and she fell asleep almost immediately. Too funny.

I will say this much-- her skin felt extremely soft when I rubbed her cheek before walking out. I'll let you know if her skin is soft and radiant tomorrow morning. Who knows? Perhaps she'll start a new fad... Have a good night.

Madeleine's Development and Our Basement

About a month ago... you know, right about when we stopped blogging for a while... we decided that it was high time to take back our living room from toy clutter. We'd been tripping around Madeleine's toys for quite some time when we finally realized that we had a whole finished basement that we were just using to collect boxes and other clutter. We realized that by failing to use the basement, we weren't only denying ourselves and our visitors a chance to enjoy a relaxing time in our living room but we were also limiting Madeleine's development.

That may sound a bit drastic but let me explain. Madeleine, like her father, is extremely distractable and extremely social. Additionally, with Down Syndrome, Madeleine's impaired cognitive level makes it more important that she focus on specific tasks. (Note: Children with Down Syndrome can have drastically varying IQs ranging from slightly mentally retarded to more severe and at this point we really don't know Madeleine's IQ or cognitive functioning level. Regardless, all children's with DS have some level of mental retardation. Recognizing thsi fact, Kirsten and I are determined to provide the best opportunities for Madeleine so that she can maximize her cognitive ability.) When we kept her toys in the living room, it was common for the television to be on making it difficult for her to focus on toys and/or specific tasks. Even when the television wasn't on, the clutter caused by the large number of toys and limited space made it hard to keep the visual diarrhea from distracting her. We're blessed with the option of using our basement for play space and we decided to lay out colored interlocking sponge tiles in the basement to provide a colorful and lively environment that is also comfortable for Madeleine as well as ourselves and nurses that work with Madeleine. Here's one picture of the basement and others are posted here:

I've provided details with the pictures in Picasa but as you can see from this picture, the basement tiles look really great-- our nurses have asked if we plan to open a daycare... answer: yes, a daycare for Madeleine and only Madeleine. We're slowly working with our nurses to figure out how we can best use this space to further Madeleine's physical and cognitive development and, oh yeah, have some fun too!

That's all for tonight-- just thought I'd give some quick details on one of our major projects. We have lots more to update-- will post it in the coming days.

The Difference A Year Makes

Yup-- we had a pretty special Christmas yesterday. We've posted more pictures of Christmas morning (as well as the rest of Decmeber) here. As you'll see from the pictures, we spent yesterday in our house with Kirsten's parents. Santa was very good to Madeleine and we have some action photos with the wrapping paper. Madeleine didn't fully grasp the notion of unwrapping gifts. We expected her to tear into the wrapping paper much as she does with our newspaper every week but instead, she was very delicate with the paper and didn't really rip and tear. We spent the rest of the day napping, cooking, and playing board games.

I'll post more about all of Madeleine's medical progress later but in the meantime, we hope you enjoy the pics. Merry Christmas!

Vindication

All,

I will be the first to admit that sometimes I get fixated on things- particularly when it comes to Madeleine. I get completely wrapped around the axle and cannot stop thinking about whatever the problem is until I come to resolution. People who work with me experience it 1st hand daily (sorry). Anyways, rarely are there articles in the newspaper backing up my assertions so CLEARLY as this one.... I couldn't let the opportunity pass.

This was in today's Post Express - a free publication given to Metro riders. The text which you cannot read in the image states that the incidents of Flu peaked on October 26th... A mere week after we were discharged. I TOLD YOU IT WAS BAD!

Anyways, Brent would like me to add this footnote - I am not a lunatic ** at least in this instance**.

All is good here - We converted the basement to a daycare center, although there is no way I'll be putting out a shingle. It's a daycare center for one. We'll post pictures when it's complete. Those who have seen it are very impressed.

Take care,

The Race!

Sorry for the radio silence! Brent and I took off Friday morning to head to the Outer Banks with his twin Brother Joe and his wife Sarah. The reasoning for the trip was so that the boys could run the OBX Marathon. The picture above was as we dropped them off a the start of the race. They looked similar to this at the 10 mile point however at the 20 and the 26.2 they looked a little road worn-- thus I didn't post the AFTER pictures. We had a very restful weekend despite the fact that the men refused to move off the couch as soon as the race was completed and every time we tried to tell them to get their own food/drink/remote they would reply "When was the last time you ran 26 miles?". I speak for my sister in law as well as myself here: We are both very proud of our husbands but see NO NEED to continue with these pursuits in the future! Training ate up a great deal of conversation and time over the past 5 months.... I think 10K's and 1/2 marathons are much more reasonable and don't make you walk funny for a week.

All of this was facilitated by Brent's parents who came and took care of Madeleine for the weekend. Personally between you and me I think they were very happy to be rid of Brent and I. While we were gone Madeleine picked up many new skills here is a list:

- So Big. Sarah is a former teacher and she put her skills to good use by teaching Maddie to do so big. Sarah taught it to her in all of about 3 minutes. I don't think the car was unpacked before she had learned it... We may be calling her in to teach other things we have been working on for MONTHS.

- All Done. We have been doing basic sign language with Madeleine for a while now and are starting to see her doing some of the signs. She now knows how to do the signs and what to do when we say them now we need her to do them when it is her preference. For example I would be over joyed if when her tummy was full she signed all done. We are a way off from this but if you asked me two months ago if she would be signing at this point I would say no way. It is not the most graceful all done sign anyone has ever done but if you say it enough times and you watch closely she does do it!

-Cow. Kay says she is doing this sign, I am very skeptical... None the less we are working on farm animal signs. Between you and me I am not sure what cows/pigs/horses/sheep have to do with our every day lives... I think we would be much better off teaching her such functional language as traffic/rain/metro. There is virtually NO livestock in our lives - unless you count what is on our plate and I think it's a little early to key her into that reality.

She is ALMOST crawling. I know I will be the first to admit I have been saying this for months but really folks she is ALMOST crawling. Brent put her down in the middle of the living room floor to make a sandwich last night and in a minute music started playing. She had managed to get her self over to her computer, touch the screen and start the music. How she got there I am not sure. She has some odd ways of being mobile that only people with hyperflexiblity can relate to. She can do perfect splits while laying full chest on the ground. THIS IS NOT GOOD. Thus, we are back to wearing the baby biker shorts so she has to keep her legs in the correct position. Now that winter is here, we can put the lovely biker shorts under her clothes so she can still look super cute while receiving the benefits of the therapy.

We are spending the weekend turning our basement into a preschool. A while back I posted I needed help with organization and soon after Deborah her nurse, Brent and I got together and we decided that the best thing for Madeleine would be to create stations in our basement where she can go from table to table and play with different types of activities. I am combing craigslist for people selling little people tables and so far have had great luck!

Have a great weekend, stay dry and I'll post more pictures as soon as I have a few minutes.

Thanks,
Kirsten

1st Report Card

Folks,
Holly is our speech therapist at the Loyola Clinic. She sent over some progress notes to us that we thought were noteworthy! If you are in the DC area and have a kid with developmental speech delays the Loyola Clinic is the BEST!

Anyways, here are her notes:

* At first Madeleine was resistant to signs and would become stiff when I took her hands to make the signs. Now, she lets me make the signs easily, looks at me when I'm making the signs, and looks at her hands as I am helping her make the signs. This shows that she is starting to understand that the signs are meaningful and convey information. Also, her sign for "more" is coming along incredibly!

* Madeleine also seems to wave "hi" and "bye" with very minimal or no prompting. She waves when she sees herself in the mirror, showing she understands the context in which to use the gesture.

* Madeleine is also improving with choosing objects when given two choices. Today, when I held out two animals and asked her to choose one, she looked at both and reached for one two times. The other times she was able to reach for an object when I gave her more motor stability. I assisted her in holding her arm to help control her movements, and with the additional support she moved her arm toward the direction of the desired object.

* The variety and frequency of Madeleine's vocalizations has also dramatically increased since the start of therapy. I have heard her produce "b, p, d, g/k" and several other sounds like tongue and lip raspberries. This variation is great because some children get caught up in just one or two sounds, wheras Madeleine's utterances are varied. This variety of utterances is a great precursor to speech.

Pretty great huh?

Quick Update

Madeleine got her H1N1 vaccine today! One could easily say I was slightly fixated on it getting done so I must tell you I am over the moon thrilled. I know some people are concerned about getting it but for us it is non-negotiable. Madeleine is as about as high risk a person could be (unless of course she was pregnant too!) for the serious implications of this virus. Anyways, as long as we get thru the next week or so while she builds immunity we should be ok---FEEEEWWWWW. I got my shot yesterday and Brent is going to get one as soon as we can find another dose. I may send him to the pediatricians office on Friday to see if he can sweet talk them into giving him one!


Brent also took her to the GI clinic today where we got the go ahead to start packing the food in her mouth!!! We are shifting to a more complex formula (still very broken down from what healthy babies eat) but a huge step in the right direction for Miss Maddie. We are also condencing even further to make her more hungry during the day. Yougurt & custard are suggested and other suggestions on high calorie things that dont require chewing would be greatly appreciated. No food food yet but we are going much faster than we ever imagined.

That's all.... Great day!

Kirsten, Madeleine & Brent

What a difference a year makes!

First things first: Madeleine is doing very well medically and the fallout from surgery is now a distant memory. We are now back on track with focusing on developmental milestones and keeping her healthy thru the winter.

On to the good stuff: We have had a very fun two weeks. Last weekend (Oct 25th) we took Madeleine to a pumpkin patch. We saw cows, pigs, chickens and a texas long horn. The first place we went you had to get on a hayride with other children (AKA virus carriers) and I decided that a trach and hay weren't a good combo. So we got the feel for a real farm and got out of dodge before we caught anything! We then proceeded to buy our pumpkins from a church parking lot! Virtually no hay there :-) It was a beautiful fall day one we will remember forever.

We had a check-up with surgery on Monday where she was thrilled with Madeleine's progress and assured Brent that the weird bump on her tummy was just a place where she put in a double row of stitches to ensure it stays put. She said by our final follow up it should be gone. She also noted that she was surprised at how much large intestine Madeleine had left. Either it was improperly noted in her chart or it had grown over the year. Regardless this is good news for the future.

On Friday we went to speech (we call it school and it is a big outing where we wear our BEST clothes). She is learning three signs - more, all done and music. She played with a barn and the barnyard animals. She practiced taking them out of the barn (she is good at that) and putting them back (not so hot). I am thrilled to say that after a weekend where I probably said the word more about one thousand times she now does the sign when I say the word. I don't think she has a clue what it means, but that is step two. Now we will have more food, more music, more bath, more toys, more computer, more etc.....

Saturday my Aunt and Uncle Jenny and Willy came to visit and play with Madeleine. We had a great time seeing them and catching up. It was especially cool because they came to visit six months ago and at that point Madeleine still had the NJ tube, vent 100% of the time and the colostomy bag. It was only when we reflected on their last visit that it really set in how far we have come in such a short period of time.

And now for the title of the email: What a difference a year makes! We are probably one of a few families that gets to use the same Halloween costume two years in a row. As you may recall Lauren and Rebecca our PA's from the NICU bought this costume for her last year. They thought it was a ladybug costume but after a good laugh we determined it was a strawberry. She didn't like it very much and the only good picture I got was on my cell phone. Who likes getting shoved from head to toe in polyester, I can't blame her! It made a good picture though...

Probably the question we get most often these days is "How is she eating?" So I'll give a report on that. She is doing great! She swallows more than she spits out and is doing well. We are finding that she eats more when she has been off the feeding pump for a long time. You may be thinking DUH - as were we! It's hard to motivate anyone to eat (except my husband) when they aren't hungry at all. We also noticed that she enjoys eating a lot more when we are sitting at the table doing it as a family. This has been aided by the fact she stays up a little later now days. She almost stays awake until 8pm!

Finally, we need some help. Brent and I had a bit of a 'debate' this weekend about the state of toys in our living room. AKA disarray. I wanted to buy toys and he was furious based on the fact that we have so much stuff and no possible way to organize the stuff we have - why would we want to get MORE? My idea was to put things into different baskets based on activity - aka a music box, sensory box, etc. Do any of you in blog-land have an effective way of organizing toys so that your house doesn't look like a daycare center?
Take care and I look forward to hearing your suggestions!

Kirsten

PS I have attached a video of her talking up a storm. The Picassa site has also been updated with October pictures - lots of cute ones from the pumpkin patch.

Pictures Galore!

Above is one of HUNDREDS of pictures taken by my Uncle Joel on the weekend of Sept. 12 when we were all in State College for the PSU/Syracuse game. I hope you will agree he did an amazing job of capturing our family - even the dogs!

I have sat on these for so long because I wanted to put together frames for our parents - but alas, that has not happened and I feel very guilty that these haven't been shared.

Look at this link for all of the pictures --- I would like to note that probably the best picture of the entire series was taken by Kathy, Joel's girlfriend, as he noted, his lovely assitant!


http://picasaweb.google.com/kfcweeks ( I am sorry I have tried 100 times to hotlink this and I cannot figure it out... Cut and paste this link into your browser and you will see the pictures)


Thank you SOOOOOOOOOOOOOO much Joel - we can't thank you enough!!!!

Pictures as promised

I had to look long and hard for a picture of Miss Madeleine naked without a bag on- probably because I wasnt the largest fan of the stoma or the bag. I'll spare you pictures with the bag on b/c you may be eating lunch while you read this. Anyways, the one on the right is from last summer (Aug 08). The little red thing sticking out is her stoma or intestine. That is what was reconnected two weeks ago. The image on the left was this morning 13 days past surgery. I think it looks pretty good! The piece of plastic on the right hand side is her feeding tube and that will be there for a long time. However you can now see her belly button and hopefully the scar will start to diminish over time the way her heart surgery scar has.

I have some more pictures to post but work calls - so I'll try to work on it tonight.

Thanks,
Kirsten

Update

Madeleine is doing very well and you would hardly know she had major surgery a little over a week ago. Sunday was a bit rough as we did not have the the perscriptions filled from discharge and as a result Mommy changed 15 - 20 diapers Sunday from 8am - 7pm. It was really unbelieveable. Now that the meds are on track we are on a much more normal schedule! She slept a lot over the weekend but yesterday was back to her old antics of barely taking any naps.

She had OT this morning and as Brent and I were walking out she was practicing her tummy moves- I can't believe she is tolerating it already. We have not weighed her since the surgery but she has lost some weight, mostly because she had really no calories for 5 days after surgery. She'll find it I am sure.

Today marks the one year anniversary of the tracheostomy. While difficult to adjust to and life changing in terms of the technology and nursing that it comes with, we credit it for being the one thing we did to turn the tides on her health issues. After the trach it has been all up hill, with a few minor bumps in the road.

We are thrilled that the surgery and hospital are behind us and as long as we can all stay healthy we have a quiet period ahead! I'll still make good on my promise for pictures...

Home!

All,

8 days after surgery we sprung Miss Madeleine from the hospital at about 3:30pm today. She came home on 24 hr feeds and there was some debate as to whether she could come home because the surgical team wanted her to be at 'full home settings' meaning they wanted her to be back to her 14hr/70ccs per hr schedule. Luckily the CICU team and Brent and I were all on the same page in thinking that was silly and decided to get her out of the hospital and complete her home settings goal at HOME!

My terse posts over the past few days were primarily based on the fact that mid-week it became exceedingly apparent that Flu season was in full stride in the DC area and my worst nightmares of this surgery could possibly come true... Since mid-august when we started planning this surgery my one and only goal was to get it done before flu season, and there we were with a healthy kid sitting in the ICU as the flu season took hold. I never was a germ-a-phobe however as most of my close friends/co-workers would vouch, I am a full on freak about germ spreading at this point. If someone sneezes I am the first to ask if they are feeling well! I realize I am crazy and on this point- I don't care!

I am going to dig thru old pitures to find some pre-takedown pix and take a picture of her belly post surgery - it's pretty impressive. Her little bum is hurting and is pretty raw. All of this was to be expected and we are using top of the line bum paste in addition to very frequent diaper changes.

We have our ace nursing team lined up for the next week so we are feeling good.

Thank you for all you have done for our family, particularly for the last week.... Here's to a good winter season and bye bye trach here we come!

Kirsten, Brent & Madeleine

still chugging along

Madeleiene is still doing well. Her feeds are advancing at a glacial rate. As of this morning her feeds were set at 14ccs per hour moving fwd 3ccs ever 6 hours. This puts us at a departure of Sun/Mon if all goes well. I am hoping that at some point the doctors will come to the conclusion that she is doing fine and can probably more a little faster. In the mean time she is watching movies and being spoiled by her nurses.
My husband usually writes very measured blogs that show great deference to all of the issues in play.... That's him - this is me. I want her home NOW. I want to watch football in my pj's with my daughter in my lap.....

So in sum - Maddie's fine, mommy not so much~

Happy dreary cold wet friday! Stay warm and dry - and if you are in State College try to avoid falling tree limbs!

This is getting expensive!

First things first. Madeleine had a good night. Three poopy diapers and a full night of sleep. When I went over there yesterday she finally looked more like herself. I think we are on the mend - which is good because this is getting expensive. Not in the way you would think... Brent and I hate being home when she isn't there. When she isn't home the house is cold, quiet and empty. I don't hear the hum of the oxygen concentrator or the vent utnil they are off. I lay awake at night aware that I can't hear the nurses banging around downstairs. I have to remember to lock the doors and turn off the lights. In sum - we dont like it.

So instead we stay out and keep ourselves busy. Let me give you an example. Last night we went to CostCo and while I wouldn't classify the expenitures as frivoulous, we didn't NEED anything ASAP. We walked nearly every isle and blew $275 dollars.... Actually for those of you who are CostCo people I felt lucky to get out for that much. She needs to come home so I stop shopping!

We don't know what the plan is for feeding I suspect they will increase the feeds today and try to see how she does. Yesterday when we walked in she looked like she had a broken leg. She had an air cast on with a ball of gauze the size of a softball on her foot. It seems she has pulled out a number of IV's and the nurse was determined to keep it on. It really didnt stop her as she waved the cast around in the air and pulled at the gauze as though it were a challenge. She is bored and feeling better -- watch out people, she's cute and smiles a lot but when she decides to get at something she is one determined little kid.

We are resorting to the old strategy of not metioning the "H" word so she doesn't know when we are leaving. My guess is sometime over the weekend.... But as you all know, that can change in a heartbeat.

Take Care and if you are State College - bundle up apparently it's cold!

Update

So yesterday was one of those sideways days in the hospital... No forward progress, no sliding backward. As Brent posted during rounds it was decided that a PIC line would be put in to allow them to safely give her IV nutrition. IV nutrition can be given via a regular IV but as I learned yesterday gulcose can blow out an IV very quickly so they prefer to have a more robust line in place. They took her down to radiology and were unable to place the desired line in either her left or right arm. Apparently all of the veins in her left arm are blown out from the 9 months of being hosiptalized last year and the one vein they could go into in her right arm was somehow occluded by her trach. Alas, at about 2pm they came back unsuccessful and the plan then was to give her IV nutrition through the line they had and try again to give her pedialyte in the hopes that her bowels 'woke up' during the day. She came back from radiology on a whole cocktail of meds and I have never seen her so drugged in my life. It was kind of funny and everyone in the CICU was laughing at her drunken salor interpretation. She quickly took a nap but after an hour woke up crying in pain rubbing her belly. After changing her diaper and trying to console her it was apparent that the feeding was the problem. We turned it off, gave her some pain medicine and the team decided to call it a night on food.

We called in this morning and the night nurse reported that she had not eaten anything all night and had had an ENORMOUS blow out - sheet changing, bath requiring blowout in the early hours of morning. Progress! What this tells us (I THINK) is that her bowels are working, maybe not up to full speed, but we are not dealing with strictures/free air or any of the nasty stuff we delt with in the NICU. So for now we hope for more of the same and that we can advance feeds slowly.

It's kinda funny because the CICU doctors keep looking at me kind of sadly that we are going so slowly at advancing 15cc's ever 2 hours. I didn't have the heart to tell them that for about a month in April 08 we agonized at increasing feeds 1cc every 8-12 hours.
We are hanging in there. We love the people at Children's but hate being there. Social visits are fine with us!
Take care and we will post any progress as it comes.

Kirsten, Brent and Madeleine

Minor Setback

It wouldn't be Madeleine if there wasn't at least one bump in the road, right? After four really great days, we're taking a slight step backward as Madeleine's gut is having trouble processing food. This isn't a major concern and honestly, I don't think anyone is surprised-- we were just hoping that Madeleine would smoothly sail through the recovery period. Here's what going on: After a good day on Sunday with a number of bowel movements, they started feeding Madeleine yesterday with small amounts of Pedialyte-- basically sugar water with a few other minerals mixed in. She didn't have a terrible reaction to it but her gut was visibly extended and was causing some discomfort as this stretches out her surgical incision. Throughout the evening and night they backed off the food and then slowly tried to ramp the rate back up but with no avail. Given this information, the medical team decided to stop feeding this morning and to simply allow her gut more time to heal and prepare for feeding.

Since its been nearly five days since Madeleine has received any substantial nutrition, the team also decided to start her on TPN-- IV Food. The only drawback to TPN is that it requires a central line as TPN can burn the skin and the doctors don't like using a regular IV that can easily fall out. Since Madeleine's veins are very small and difficult to access, they're taking her down to surgery insert the central line (also called a PIC line).

In the grand scheme of things, this is a very minor setback. Once the PIC line in, Madeleine will receive nutrition and the doctors will likely try feeding her again in a few days once they're convinced that the gut is fully recovered from surgery. That's all for now-- we'll keep you posted as we learn more.

we have poop!

Maddie joined the ranks of poopers with a bang just moments ago with an A+ blowout! We are in a shared room with some very sick kids and we got some odd looks from parents as we were celebrating!

The nurse is at lunch so we have no idea what this means. Progress for sure... Now - let's get out of here!

She was very fussy before and is laughing and smiling now. I'd say so!

Kirsten

still no movement

Just a quick update.... Nothing has changed overnight. She was a bit restless, but nothing to worry about since they are poking and proding all night. Still dimished bowel sounds and no poop yet. The nurse said the surgeons were pleased with her incision and may discuss some drugs to help move things along and avoid TPN.

The nurse last night called to tell us Madeleine was sitting up on her own and playing - what a trooper! Less than one day after surgery and she is sitting up! Mommy wouldn't be moving AT ALL for a long time! They asked us to bring in some toys b/c she was getting a bit bored. That's what happens when you are constantly stimulated by nurses, parents and grandparents every waking minute of your life.

We'll keep you posted.

Kirsten

Good Night

All,
Madeleine had a very good night and we are making great progress today. If you know me at all, patience in any way shape or form is not a strength of mine so if I had my way we would be out the door by now! Luckily cooler heads prevail. I'll review where she was when she came out of surgery and where we are now and where we need to go to get out.

When she arrived back from the OR (operating room) she was on 55% O2 (we breathe 21%), with a rate of 22, meaning they gave her 22 breathes per minute whether she liked it or not. Rate is necessary when you are a. really sick and cannot breathe on your own, b. so sedated the nervous system cannot be relied upon to breathe. She was coming out of anesthesia so they kept her on the rate over night. As of about 2 minutes ago she went back on CPAP which is her normal home setting. CPAP means that the vent is giving her no manual breaths, rather every time she breathes in it gives her a little extra push to make sure her lungs expand. For all you snorers in the Bushey family, this is the exact same process that the sleeping mask goes through.
As for O2 she is now down to 40% and we suspect she'll be off that by tomorrow some time.
She is in a great deal of pain right now and it is pretty tough to watch.In the grand scheme of pain she has been in in her life, it's not all that terrible, but knowing that we did this to her and she was happy at 8am yesterday makes it tough. They are giving her morphine and just like last time she had surgery it doesn't seem to giver her that much relief. Madeleine responds to good old Tylenol. Unfortunately, because the doctors want nothing in her stomach regular Tylenol is a big no no. So after 2 years I have grudgingly agreed to allow them to give her a suppository. A TINY sliver of Tylenol in the hopes that it calms her down.

On to the belly, she came back from the OR with no bowel sounds and none expected. They are under strict orders to not put anything into her tummy until she poops and has good gas. If only we could channel her daddy for this activity -we'd be at home already! This morning we called to check on her and the nurses said there were a few bowel sounds but we needed more before we proceed. We are REALLY hoping that something happens before Monday because if not she'll need a central line to give her IV nutrition. This is not the end of the world but with IV's comes bacteria, with bacteria comes infection, with infection comes a longer stay in the hospital. For more info- go back to Nov 2008 blog posts to refresh how a line infection can cause problems. All of this being said - no one thinks we'll get that far and we will be able to advance feeding before we get to the point where she needs IV nutrition.

All in all, things are right on track if not a little better than we anticipated. It's nice to see our old buddies of the CICU all of whom remember a sickly skinny little girl. Dr. Berger her PH doctor is the attending this weekend and I am THRILLED that he is here. It makes the countless bags we changed through September to accommodate schedules, worthwhile.

After surgery yesterday we rushed home took showers and ran off to the wedding of our friends Jason and Thalia. While at first glance you may think we were insane however we had a wonderful time celebrating their marriage and internally celebrating our own surgical victory. Today we are sitting in her room doing the hospital thang and going to do our best to distract ourselves from realizing how quiet and lonely our house is when she isn't there.

Have a wonderful weekend folks. We'll post updates as we get them.

Kirsten, Brent and Madeleine

Successful Surgery

All,

Madeleine just got out of surgery and all is well. We haven't seen her yet as she's getting transferred to and settled in the CICU but her surgeon was very pleased with the surgery. Recovery can be complicated but so far, things couldn't be better. We're obviously ecstatic and can't wait to see her without the colostomy bag.

Poop out your butt!

Well folks, it's finally here. Tomorrow is the big day. For some the title of this post may be crude but it does illustrate the main goal of tomorrow. I have been telling Madeleine all week that after Friday she will poop out of her butt... Not surprisingly she doesn't get it. All the better for her.

We were both steady at the helm of the ship until this morning when the alarm clock went off and it hit me like a ton of bricks. Why again are we doing this? Is the bag really that bad? Then I came to and remembered the evenings where I was by myself waiting for Brent to come home with a naked baby in my arms covered in poop... Yes it is time, and yes we are ready. It doesn't make me have to like it.

Here are the facts. All of which could change when you enter the vortex known as hospital land.
- We are scheduled for surgery at 8:45am. We have to arrive at surgery by 6:45am. She will be NPO after midnight and will have pedialite until 4am to make sure she gets all her fluids (extremely important with Pulmonary Hypertension)
-The Operating Room is scheduled for 2.5 hours, this does not count putting in IV lines.
- We are allowed to sit with her until she goes into the O.R. and we will then not see her again until they have given report to the CICU nurse that will be taking care of her. After the surgeons part in the surgery is done she will come out and tell us how it went and then we usually wait about 45 min to see Madeleine up in CICU. If all goes as planned we should be able to see her around noon - early afternoon.
- You are given a pager so that you can leave the waiting room and still be in touch. For the big surgeries they give you a text pager to be alerted to the key moments of the surgery. I say - no thanks.... No big surgeries.

You may wonder what parents do when their child is in surgery. The main goal is to not bite each others heads off. Easier said than done. Lots of useless trips to the bathroom, cafeteria, flipping through magazines you would never fathom reading ( I believe last time I read RV enthusiast). My father will be there to review useless sports facts of the past decade with Brent. They both find it soothing.

This is big no HUGE and we can't wait/are scared out of our minds....

Think happy thoughts tomorrow at 8:45.

We'll post as soon as we know something. Poopy diapers here we come!!!!!

Kirsten, Madeleine and Brent

T-Minus One Week

Hey All Kirsten here... per usual things are a bit nuts in our world so I figured I'd give you a quick update of where things stand.
Last weekend we stayed in DC and had a number of fun activities planned here is a brief summary.
Friday Evening we saw all of our old friends at an annual fundraiser hosted on the roof top of Charlie Palmer's Steak House. For non-native DC folks, this is possibly the best view of the city with the capitol building in full view. We have attended this event for three years and ran into folks who we haven't seen since last year when Madeleine wasn't doing well at all. You could tell people were nervous to walk up to us not knowing what we would say when they asked about our daughter. We were happy to report everything is going famously! One of the highlights for me was running into a woman we met last year from the Children's Hospital development office who I once again offered to help in any way we possibly can. Brent and I continue to owe everything to CNMC and any small gesture we can do would be more than worth it in our book.
Saturday morning Brent's family from TN, Bill and Bernice came for breakfast. It was great to introduce them to Madeleine and catch up with them since it had been 3 long years. I cooked breakfast and I gave them the whole treatment with fire alarms and all. I tried to make one of my Aunt Jen's breakfast casseroles and I almost had a panic attack trying to determine whether the eggs were cooked. I hope I haven't scared Bill and Bernice to the point of not wanting to eat my food again, I'll know if the next time they come they offer to go out to eat!

After they left we had a lovely day of putting on sweatpants and laying on the couch to watch both of our teams lose miserably, in my case on prime time national television. As I see it, at least PSU didn't wait to break my heart in November and in some ways I'd like to thank them for giving me some free time this fall! JK - I'll always watch.

Sunday we worked on the house b/c we are hosting a baby shower for our good friends Becky and Steve. The highlight from Sunday was when Brent's beloved Lions finally won a football game. With a minute to go Brent was holding Madeleine in his lap and I turned to him to ask if I needed to take her for fear he may toss her if they lost the game in a last second play. Needless to say they won (sorry skins fans) and our phone immediately rang off the hook....

Yesterday we had two doctors visits GI and pediatrician. Our GI doctor was amazed at her progress and she looked like a nourished kid! It's one of those comments that makes you wonder, well what did she look like before? While it bruises my ego, I know what she is saying and I am happy that we have now arrived at nourished. We are condensing feeds to 14 hrs a day. This is WONDERFUL news b/c it now means that our ventilator weans are now aligned with our feeding weans. She is on the vent at night and during naps and we are now on that schedule for feedings as well. It was somewhat annoying to have to drag the feeding pump around when she was off the pump and often times we forgot (shhh don't tell the doctors). The plan post surgery is to start going towards a more normal formula, bolus feeds and then many many moons from now real food. I'll talk about how mouth feeding is going later. We are making painfully slow strides but I have been directed to not get frustrated because I will project that on Madeleine and it will delay things even longer - so alas I'll swallow it and keep it to myself :-) This too shall pass right?

Our pediatrician was great and was thrilled to see how well she was doing. We reviewed all of our doctors visits since we last saw her in June and she got her RSV shot and her flu shot. Madeleine let out a very loud angry cry when she got the shots, something we rarely hear. I know this will sound very weird to parents of typically developing children, but I love to hear her cry like that. When she has to hyperventilate to get the air to scream some more... It makes me smile. I know I sound evil, but the root is in I love the fact that she CAN do it, that she has the lung capacity to really let loose.

OK --- for those who are still reading here is the best news. She is now (drum roll please) 17lbs, 8oz. We gained well over a pound since our last weight check! She is in the 50th percentile in length on the Down Syndrome growth chart and 25th percentile for weight. Let me put this in perspective... The first 14 months of life - WE WERN'T ON THE CHART. As our GI doc said yesterday - you wish your bank account had that kind of growth --- ain't that the truth!

We have one crazy weekend followed by one wild week leading up to next Friday aka Surgery day. They estimated she will be in house for one week putting her estimated arrival home on 10/16. My birthday is the 19th so all I want is to have my birthday dinner with my little girl in her highchair....

Take care folks - have a beautiful fall weekend. We'll post next week.

PS - My uncle took amazing pictures when we saw him a few weeks back.... I have not posted them on purpose b/c I want our parents to get a gift I have been working on prior to sending it out to the masses...

Chatty Kathy

We stayed home this weekend and really had a great time (even with Michigan State losing to the dreaded Fighting Irish.) We visited with friends, worked on our guest bathroom-- its much nicer now, we walked around Lake Artemesia-- a jewel of a lake just a few miles from our house-- and Madeleine had her first experience in a swing. Additionally, Madeleine "found her voice" this weekend. I came in from a long run on Saturday morning and Kirsten was sitting with her in the living room and she was just chatting away-- she's made noise for a long time but this weekend, she started adding in consonants and was very happy with herself. We have one video that gives you an idea of what Madeleine was saying all weekend long... Enjoy the video and photos:

How Far We Have Come

Hey all - It's Kirsten here and I just want to take a quick moment to reflect on how far we have come. A year ago this morning Brent and I got a call at 2:30am from a Cardiac Fellow who told us to rush as fast as we could to the hospital because things were going south, fast. I honestly don't remember much of the next hour just that we were soon standing outside our daughters hosptial room with the crash cart outside her door and no less than 15 doctors in her room. She was in hypertensive crisis and none of the quick fixes seemed to be working. After hours of hard work they finally got her stabalized and over the next few days we did continue to slide backwards but at a much slower rate. Over the following 3 months we had good days and bad days, frustrating days and days I lost it on the doctors. People often comment "We don't know how you have done it" and my response has been "it has not always been pretty".

And here we are today. Both working from home because today is Madeleine's first day of Speech Therapy. A day my mom has been talking about since she was less than 3lbs in her isolette. A year ago, I am not sure I thought we would get to today. A year ago today was my low point and the moment that keeps me up at night. Looking forward I cannot wait to experience this fall, maybe even play in some leaves with my daughter. When you live in hosptial land whole seasons can go by without you even noticing. This year I plan in taking in the colors, celebrating our successes and remembering just how far we as a family have come.....

For those of you who have picked us up off the floor and dusted us off- again I want to say thank you.

Kirsten

Back in the Saddle

If I wanted to explain why I haven't blogged this summer, I could respond in the following ways:

"I took the summer off"
"I didn't want to write about medical stuff and that's what the blog's been about."
"I've been busy."

All of the statements above are likely a bit true. That being said, I don't know why I haven't been blogging this summer but I miss it and I'm going to start blogging again... perhaps slowly but I'm feeling the urge to start writing about my daughter again. Kirsten's done an admirable job keeping you up to date with pictures and updates and I'm hoping she'll continue in that regard. My focus is going to be... well, unfocused. I'm just going to write what moves me. If folks find it interesting, that's great. However, I'm going to write it regardless as I think it helps me sort out all of the craziness in my brain and I kinda like it...

Okay-- with that out of the way, I want to give a quick synopsis of the last few months as we've really had a wonderful summer. If you've talked with me this summer, you've probably heard me say something like "the real Kirsten and Brent are back" meaning that we've been busy and we've been travelling. In the past two months, we've been in the following cities:
- Outer Banks, North Carolina for a week-long vacation
- New Orleans, LA-- Kirsten and I took our first weekend vacation sans Madeleine
- Baltimore-- we visited with Kirsten's parents on their boat.
- Flint-- we visited with family back in Michigan.
- Talcott, West Virginia-- Spent a weekend at our cabin
- State College-- Attended a PSU football game and hung out with Kirsten's parents.

You could say that our motto has been "have healthy child and will travel." Of course, some of this travel has been condensed in the summer as we've been advised to slow things down this fall/winter. The flu season is scaring the heck out of us-- as well as our doctors-- and we're going to do our best to avoid getting Madeleine sick this year. It's important that she stay as healthy as possible as she's growing like crazy right now and her lungs can make major strides if she can just avoid getting sick.

In addition to our travels, I've been pretty busy as I'm training for a marathon in November and am teaching a class at Kirsten's school. The class ends tomorrow night but the past five weeks, I've taught an introductory course in English and Math to prospective college students. I've really enjoyed the class as it is composed of students who did not do well in high school but want to get into college and they must pass my class to be admitted. The class requires equal parts of tough love and dedication to getting kids over the hump and I feel like its a perfect match for my skill set. Of course, while I've been off on my long runs and/or teaching and lesson planning, Kirsten's been pulling the heavy load in our house and Madeleine's tremendous strides this year are a direct reflection of her steady focus and determination to ensure Madeleine's success.

I'm sure I'll write more in the coming days and weeks contrasting the joy we've felt this summer with the diffficulties that we struggled through last year but this post is simply about feeling good. In that vein, here's the update that we just sent to our state coordinator who asked for an update on Madeleine:

Madeleine is doing really great. We finally settled on October 9th for the surgery date as this is the first date that our surgeon and cardiologist were both free—they demanded that they both be available. We’re changing her bag at least once/day as Madeleine is extremely active. Needless to say, we can’t wait for the surgery.

In terms of general medical issues, we have an appointment with our pediatrician later this month (I forget the specific date) for a regular check-up. At the check-up, we’re expecting to get the RSV shots (I forget the specific name) as well as the flu shot. We’re definitely a bit freaked out by the H1N1 virus and we’re hoping to avoid that at all costs. Our pediatrician has us at the top of her list for the shots and we’ll be coordinating with her office once it arrives.

In terms of physical development, we’re working closely with PG County’s Infants and Toddlers on her OT and PT goals. She’s slowly getting closer to crawling and we’re also beginning to work toward walking. We (meaning Kirsten) found a research study online where parents use a treadmill to encourage walking and the results of the study showed that kids with Down Syndrome can walk much sooner if encouraged to walk on a treadmill for a few minutes/day. I know it sounds crazy but it’s a research study from the University of Michigan and pretty much everywhere we looked, folks are praising it. In any case, we watched a number of videos online (YouTube is great) and we tested the idea out this past weekend at Kirsten’s parent’s house. Madeleine really seemed to like it, so we’re currently scouring Craigslist to purchase a treadmill. In terms of fine motor skills, we’re working with Madeleine to pick up toys and then set them down—she has the picking up down pretty well but she’s mostly just flinging them away right now. Our therapist explained that this is a normal developmental stage and believes we’re making good progress. We just think we’re having fun.

In terms of eating, we’re making slow progress as Madeleine is eating small amounts of pureed baby food twice/day. She took a swallow study about a month ago and demonstrated that she’s able to protect her airway when swallowing. Still, she’s not really coordinated with her swallow and its going to take a long time before she’s eating anything that constitutes a large amount of calories… In the meantime, we continue to condense her feeds and we hope we’re close to start bolus feeding via the g-tube. We have a follow-up appointment with the GI clinic at the end of the month where we’ll establish her future feeding schedule. Over the past month, we’ve increased her calories quite a bit as she wasn’t putting on a great deal of weight. Note—I’ve used the past tense as over the past month, Madeleine’s new nickname is “Large Marge.” We don’t have a scale at home but we’re confident she’s gained plenty of weight this past month—holding her is getting to be a chore—and we’re elated with the growth.

In terms of speech/language development, PG County, through Infants and Toddlers, is sending a speech therapist next week to assess Madeleine and we’ll establish some new goals with them. We’ve also decided to pursue additional speech therapy through the Columbia Speech and Language Center—they focus specifically on issues related to Down Syndrome. We’re going to work one-on-one with a graduate student once/week and we think this should really help her development. Our first appointment is this Friday, September 18. We’re also starting to use sign language and we think that by combining sign with the other speech therapy, we’ll help Madeleine to start communicating her wants/desires. (that’s the goal at least.)

Nursing is going well. We’ve condensed our nurses down to two primary nurses during the week—one during the day and one at night. We prefer this as it ensures consistent care and also limits the number of germ infested people coming into our house. Fatima and Deborah have quickly assimilated into our family and its been great but also challenging. Its hard to be away from Madeleine during the week knowing that we only get about 60-90 minutes/day to work with her (she falls asleep around 7:30 every night). The nurses have been pretty good but no one can do all of the work that we’re capable of doing with Madeleine. Our day nurse attends all of the therapy meetings with us and we’re doing our best to express our goals for the nurses so that they can help aid in Madeleine’s development.

I think that covers the majority of our work right now. We’re pretty happy right now as we feel like we’ve come a long ways and despite the challenges ahead, we’re encouraged by Madeleine’s steady progress. We don’t have appointments set up with any specialists other than GI as they’re all waiting to see how she recovers from surgery. Rest assured, we’ll have a host of appointments—with pulmonary, cardiology, ENT, GI & genealogy—set-up when we’re discharged from the hospital. If all continues to trend in the same direction, the goal is to start talking about removing the trach in late Spring/Summer next year. We have a long time before those discussions get serious.

That's all for now. I hope everything is well with you and your family.

A few pictures... Not many words....

Things are great here...... Frances Hittle was born on Tuesday after her mommy was a champ through nearly 24 hours of labor. A very different experience than mine to say the least. Mommy, Daddy and Frances are home. She is adorable, has more hair than Madeleine and we can't say enough how happy we are that all are healthy!

I brought some pink clothes as well as food over to their house last evening and Madeleine came along. I stood up to help Becky with Frances and when I turned around to pay attention to Madeleine again, she was crying so hard huge tears were flowing down her face. It seems that mommy helping out another baby was not appreciated by Miss Maddie... A bit of jealousy can you say???

Anyways, it's been a wild WILD week here and doesn't show signs of slowing down- I thought I would take a minute and post some cute pix from last weekend in WVA.

Take care --- and oh yeah - We are.... Penn State!!!!

We have a date!

Put it on your calendars folks --- October 9th.


The stars (and Doctors) have aligned and this is our chosen date. All of the doctors will be in town and Madeleine will have received her Flu Shot and RSV booster for the month of October. The goal of the surgery is to reconnect her bowels and do an 'ostomy take down'. Essentially the colostomy bag will be gone and she will go to the bathroom just like every other kid. As long time readers may recall, we decided against this surgery in June 2008 and opted to take her home and let her grow before attempting another surgery. And then last fall happened..... Needless to say, ostomy reversal became very low priority after the events of last fall. The doctors anticipate this not being anything out of the ordinary and they have given us a ballpark of her being admitted for a week. This will be longer than her last surgery as anytime you mess around with the bowels they 'go to sleep' and you have to wait for them to 'wake up' before you can start advancing feeds. This can be a very long process, and for the really long time readers you may remember this being a problem when she first went to Children's to have her NEC surgery. We kept asking " what happens if her bowels don't wake up?" and they kept telling us that they would. Soooo, in essence it will be a waiting game. In the mean time mama bear will be sitting guard making sure that everyone washes their hands when they come into our room so that we don't catch any bugs while we are there.

As I posted last time, this has recently become more of an issue because Madeleine is all over the place and rolling on the floor is not conducive to keeping a bag on. Not nearly as dangerous as any of the issues we have addressed in the past, but I promise you - just as frustrating.

Madeleine is getting closer to crawling every day. We had a bit of a setback on feeding right after our swallow study and we attribute this to her dislike of barium. Who can blame her? However after a few days of giving her a break, I am happy to report she will once again open her mouth when I put a spoon near it. Brent commented that this seemed to really be frustrating me - and I'll be honest, it did. We both come from a long line of eaters and it is a core function to live. PLUS she did it before. It's the first time in a long time that once we hit a goal we had to step back and start over. Further, it was usually the first task I executed after walking in the door from a long day of work and 3 trains to get home. I JUST WANTED HER TO OPEN HER MOUTH... Alas, it's over with and we are back on track.


Until surgery we have a busy few weeks ahead of us. We hope to meet the newest member of the Hittle family ANY DAY NOW, we hope to catch a PSU football game and see Joel & Kathy from FL and both sets of parents.

Take care folks, if you are traveling this holiday weekend - be safe.

Madeleine, Kirsten & Brent

Great Day!

I realize I promised last week that we would post more pictures and then never got around to it.... I am very very sorry for letting people down.

Now on to the good stuff:

This morning Brent, Deborah and I made the trek up to Children's hospital for two appointments. I bravely scheduled them 1/2 hour apart from one another (I know not my most brilliant move, but it worked). We met with surgery and the radiology. Let me summarize both appointments.

Surgery: The visit was scheduled as a 3 month follow up to the G-Tube/Nissen surgery to make sure the surgical site was clean and to discuss any challenges we may be having with the new set up. We covered that topic in about 30 seconds and moved on to MY real reason for being at the appointment. Two weeks ago I was in New Orleans for a work conference and while there Brent's parents so graciously offered to help out by coming and taking care of Madeleine so Brent wouldn't be up to his eyeballs in my absence. Of course I obsessively called every 2 hours or so and kept hearing them tell me that her colostomy bag was falling off. I figured it was just that the weren't doing it right ( no offense Kay & Rick) and that once the old pro got back we would get back on track.... Ohhh no. I was wrong. It seems that while I was gone Miss Madeleine decided to start rolling and doing commando moves all over our living room. As you can imagine this is not conducive to keeping a colostomy bag on for any length of time. As a result since the 31st of July we have changed the colostomy bag every single day. To give you some context, under normal circumstances this should only need to be changed every 5 days. To keep it clean- we have had some MONUMENTAL blow outs (think head to toe) since Madeleine has become more active.

So, back to today. Over the past week I have met with or spoken to every one of her specialists to discuss the idea of doing the reattachment surgery ASAP before the Flu/RSV season hits in late October. We had initially thought that we would reconnect in the early spring however the prospect of changing bags every day from now until April was daunting, to say the least.

After staying up much of the night worried about how the conversation would go and how we would have to plead our case on how awful it is to change that stupid bag every day the doctor walked in and said "So I hear you want to do the reconnection soon, great! I'll put you on the schedule in the next few weeks" It seriously could not have been any easier. Actually, I felt cheated out of a good health medical debate, if you must know the truth. We are waiting for the scheduling team to call to put us on the calendar. I know it WON'T be the first two weeks of September b/c her Cardiologist will be on vacation and doesn't want her in the hospital while he is gone. If we could do it tomorrow, I would.

Radiology: We went down to the fluro lab where Madeleine is nearly a rock star from back in the days of her constantly pulling out the NJ tube (this is where we would go to get it put back in). Today we were there for a Modified Barium Swallow (MBS), otherwise known as a Swallow study. Over the past few months we have been introducing food so that we could get her to learn to like having food in her mouth again. We started by playing with it and then slowly we started giving it to her in very small quantities. Last August, when many of the really big problems began, we determined that Madeleine was not able to protect her airway and this lack of protection is why she would get aspiration pneumonia's on a biweekly basis. The Nissen surgery helped us make great strides with the reflux and once she recovered from the surgery the next step was to do the MBS to determine if she was now able to protect her airway. If we could prove that she was able to eat properly we could start advancing mouth feeding. Easy enough, right? Wrong. You can't just expect a child who has not had anything in their mouth for almost exactly a year to say mmmm peaches or yummy pears. So after slowly introducing food and spitting 90% of it out for the past month we determined earlier this week that she was swallowing some of it! Thank god, b/c the appointment was set and I didn't want to reschedule because she wasn't ready.

Today we went in, strapped her in to the chair and gave her barium while they did continuous x-rays to determine whether or not food was going down the right way and she was able to protect her airway. As you can imagine she wasn't a real big fan of the chalky baby food we presented her with, but after prying her jaws open we were able to get some in her mouth and she swallowed it perfectly!!! We moved on to 'thin liquids' aka juice, and she did very well with that as well. Overall, we got an A+. We were given the directive to continue to 'advance feeds' and meet with our GI doc next week to determine our future course of action. I think it is safe to say it will be a very long time until Madeleine gets the majority of her nutrition via her mouth, but the fact that she can have food in her mouth is monumental.

All in all, a fantastic day at the hospital.

As for the rest of the summer we have had quite the whirlwind including a family vacation to the Outer Banks, a get away for Brent and I to New Orleans, a visit from old friends and coming up soon a trip to visit the Michigan clan. Madeleine is on a much more normal schedule with longer naps and an earlier bed time and she plays very hard during the day. She is off the vent 8 hours a day (two 4 hr periods) and we are working towards only being on the vent when she is sleeping.

I cannot say enough how much fun we are having and how the little things remind us of how far we have come. Here are just a few tid bits:

- Madeleine is incredibly tickleish. She laughs with her whole body when you tickle her.

- Diaper changes can be likened to a WWE event

- When we go to the doctor her medicines all fit on one page (this was a victory in my book!)

- She gives hi-five

- She loves blowing bubbles with me

After writing this I need to once again thank Brent for the hundreds of posts over the last 18 months. It is a lot of work that I often took for granted.

Take care, hope to see you soon. Check out a few *hundred* more pictures on our picassa site.

We've taken too many pictures!

According to my mother the 'troops are getting antsy' and we need to post... Fear not- everything is WONDERFUL and that's why we haven't posted. Brent and I are having so much fun we forget to blog. We discussed the need to blog today and then realized that we had too many pictures on our Picasa site and needed to upgrade to a larger account. I guess there is a 24 hr waiting period on posting after you increase your account size. We have so many stories that are much better with pictures, I don't want to tell them without the accompanying pictures. Anyways, tune in tomorrow and we will have a full post outlining the last month of our lives which will give you a better understanding on why we haven't posted. Suffice it to say Brent and I are back to our old ways going a million miles a minute.
I feel like the TLC producers of Jon & Kate ---- what a teaser right?
Take care,

Kirsten

Happy John Henry Days

Wow-- its been a long time since I've posted. I got a call last night from a friend concerned that things might be wrong since I hadn't posted so long. Let me assure you-- it would be hard for life to be better for us. Madeleine continues to progress at a great pace and we're busy being "normal" parents, working hard and playing hard with Madeleine.

In any case, I hope you all have big plans for the holiday weekend as I'm sure you're aware that this weekend is John Henry Days here in Talcott, West Virginia. Kirsten and I decided to make the trek out to our cabin last night with Madeleine. If you're a long time reader of this blog with a good memory, you'll remember that a year ago, we brought Madeleine out here for the big celebration and she was just a few days removed from the NICU. (click here for a link to the post last year.)

I'll try to post a bunch more this weekend as I have lots to update (including pictures_) but here's a quick run-down of accomplishments over the past few weeks:

- Kirsten and I spent a weekend away from Madeleine for our fifth wedding anniversary. (can't believe she's put up with me that long.) The weekend was possible as Kirsten's parents took over parent duty for Saturday and Sunday. They did a great job and while excited about it, they were ecstatic when we showed up on Sunday to take over. Despite Madeleine's great strides, she's still a complicated little girl.
- Madeleine is doing great being weaned from the vent. We're officially at the point where she is off the vent for two three hour periods. While that sounds good in theory, we don't live life by the clock so we're rapidly approaching the point where we have her off the vent when she's awake and happy. When she's tired and/or cranky, we put her back off the vent. By August, we're confident that she'll be off the vent all of the time when she's awake. (We're not far off now.)
- Madeleine is still getting all of her nutrition through her feeding tube but we're giving her daily "tastes" in her mouth. Michiganders reading the blog will be happy to hear that Madeleine is a big fan of Vernors but she doesn't seem to like apple juice much. If you've ever had Vernors, you should be shocked-- I love it but its ginger ale on steroids. We're going to try out a few other flavors this weekend. We don't give her much fluid-- usually just have her lick a clean wash cloth. The goal is to get her comfortable with taste in her mouth.

Okay-- that's all for now. The river is calling my name. Check back later for lots of pictures and hopefully some good updates from John Henry Days.

First Swim

Hey All,

We had a great weekend hanging out at our house working on the yard and walking around with Madeleine without any cords. We're now up to two one-hour periods/day and she is really doing great off the vent. We increase these periods to 90 minutes tomorrow and then to two hours this weekend. Madeleine enjoyed hanging out in the hammock with cousin Liz:

She enjoyed styling her new bathing suit:

She also really enjoyed cooling off in her pool.

I think the best part about the video is that I didn't even think to point out that she didn't have any cords attached-- its already feeling normal.

That's all-- just a normal weekend around the house... Not that anything has ever been normal in our household... We've uploaded a few more pictures to picasa here. Have a great week.

No cords

If I could put into words how happy I am to write the title to the post, you'd be reading for quite a while. Instead, I'll keep it short-- I just held my daughter in my house and she wasn't attached to any cords. This isn't permanent and we still have a long way to go. Still, it was pretty revolutionary and-- we have a short video to prove it. I'll write more later-- tonight is for celebrating. Enjoy!This is KW writing: We looked out windows and went outside and then we looked in the mirror. All by ourselves!!!! Then we checked out the kitchen... Endless places to look!!! It seems so unreal. We have started with 30 min. sprint trials off the vent. Every few days we can increase the duration as long as she handles it well. Goal: By August to be off he vent all day. Speechless.

Going good but...

Things are going really great in our household. I have a new job and am really enjoying myself. Kirsten's always had a great job and she does great at it. We're finally getting some time to work in our yard and Kirsten and I are starting to feel really great about how our house/yard look.

Most importantly, Madeleine's health continues to improve and we're cautiously beginning to think about weaning her from some of her medical devices. FYI-- we meet with our surgeon this Thursday to remove her sutures and make sure that all looks good. We'll likely switch out the existing feeding tube for a more permanent tube and we'll learn how to change the tube on our own at home (just another checklist on our joint MD degree.) We're also meeting with GI on Friday to discuss her feeding schedule and we hope to begin condensing feeds-- the time frame may be slower than we'd like but so long as we see progress, we're not going to complain. We're also meeting with cardiology next week for a check-up and also meeting with our pulmonary doctor where we hope to lay out a schedule for weaning Madeleine from the vent-- at least during the day time. This will be a complicated discussion as cardiology plays into it as does GI. Cardiology wants to make sure that Madeleine gets oxygen as it treats her pulmonary hypertension. GI has a say in the matter because the vent should ease the burden of breathing thereby enabling her weight gain. Since GI is in charge of managing weight gain, they need to consider how many calories per day Madeleine is getting. It all seems a bit complicated for a happy little 15 lb baby but hey, we're used to complicated when it comes to Madeleine.

In short: we couldn't be happier with Madeleine's progress and we have every reason to believe that her health will continue to improve to the point that at some point in the future (still well over a year away) she could be without any tubes/machines/weird medical stuff. I can't begin to tell you how great it is to honestly write that sentence. Given all the struggles we've been through the past 15 months, its a major relief to not worry about those major issues. (we still worry but not at the same level)

While we couldn't be happier with Madeleine's health, I know that I'm beginning to deal with the usual parent issues of "when will she crawl/walk/talk, etc?" It seems silly to worry about such issues-- especially since we know that these milestones will happen, just don't know when. Still, Kirsten and I have backgrounds filled with accomplishments and we're not accustomed to living life with a "wait and see" approach. Instead, we're used to surveying the landscape, setting milestones and then working like crazy to meet our milestones. With Madeleine, we're working like crazy (Madeleine's occupational therapist met with us today and remarked how persistent Madeleine is during her sessions) but we're unable to benchmark against traditional milestones. We've tried comparing Madeleine's development against traditional charts but they just don't work-- Madeleine's health issues are unique enough that she's all over the map. At the end of the day, I know that the milestones don't mean anything-- we know she'll eventually reach them. Still, its difficult not knowing what to expect and when we can expect it. I suspect that this feeling is normal for all parents and I'm being somewhat naive to assume that a healthy kid can be easily mapped against the existing milestone charts... perhaps I just need more experience at this dad thing.

Again, there's no need to be concerned-- I'm just expressing some of the frustrations that have been somewhat needlessly nagging at the back of my head. Despite these frustrations, I can honestly say that 5:00PM is my favorite time of the day as I get to leave my office and go home to an extremely happy and healthy baby girl. Life doesn't get better than that... Have a good one.

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.