Day Three

Today can be summed up by Kirsten's comment this morning "these are the things that normal families get worked up about at the hospital." As you might be able to tell from the comment, Charlotte is doing fine but has hit her first "speed bump." Kirsten and Charlotte have been working very hard to get nursing down and while I couldn't be prouder of the two of them, Charlotte has lost a little bit of weight (she's down to 6 lbs 7oz) and her bilirubin levels have necessitated that she "go under the lights." Fortunately, the lights come in a handy-dandy blanket format that allows us to keep her in the room and to keep nursing. Here's a picture of our glowing baby:


The good news is that Kirsten continues to work extremely hard on nursing and so far, she hasn't had to supplement with formula. We're not entirely opposed to using formula but if possible, we'd prefer to nurse. Again, its something we're focused on but not really too worried.

We've gotten a ton of comments about Madeleine's photos in the room as its pretty obvious that Madeleine has matured a great deal since my last blog post. (sorry bout that.) In any case, Madeleine is staying at home keeping her nurses and grandparents (Kirsten's parents) extremely busy. We're ecstatic to report that Madeleine is making great progress in her swimming lessons (she started last week) and she's gotten to the point where she begs to be dunked under water. Its hard to imagine that a child that had her trach removed in late May could take to water so enthusiastically. I've been staying at the hospital with Kirsten getting accustomed to Charlotte and her healthy lungs (wow-- big difference) and we're looking forward to Thursday when we go home and start getting settled as a family.

That's all for now-- check out our picasa site here for additional photos of Charlotte. I've also posted photos of Madeleine (and family) from July 4th weekend out on Kirsten's parents boat. Hope you enjoy!

A New Addition

We'd like to take a moment to introduce the newest member of our family: Charlotte Elizabeth Bushey was born on Sunday, July 11th at 9:13am weighing 7lbs 3 oz and 21 inches long. Mom has been a champ throughout and all of my girls are doing pretty great. Here's a picture of the whole family:

That's not a bad looking family, eh? Check out our picasa site here for more pics.

Two Years? Really?

(This was supposed to post last night) Have two years really passed? I remember Madeleine's Birthday vividly including:- Picking Madeleine up for the first time. She was so tiny and I wasn't sure I should pick her up. The NICU doctors had to assure me repeatedly that she was stable before I'd pick her up.- Bringing her over to Kirsten and seeing their eyes meet for the first time. My wife is a natural mother and that first glance made it immediately apparent to me.- Wheeling her down the hallway with the NICU doctors- they let me push the bassinet as they were under staffed- and then signing her into the NICU. I had to ask the admitting nurse for the date and she smiled and said "March 3rd is a date you'll never forget." Boy was she right.- Running frantically back and forth between the post-op room where Kirsten was recovering and the NICU- desperately wanting to be with both my wife and daughter. - Running into my father-in-law in the hallway when dashing back and forth. Steve had somehow slipped past the front desk nurses to see if everyone was okay. (I'd made one frantic call earlier that day telling my in-laws that the baby had to be born emergently and then hung up after giving them the name of the hospital.) I'll never forget Steve's expression when I told him that his daughter and granddaughter were resting peacefully.- Calling my parents to tell them the news. I talked with my mom first and then called my dad. My poor dad was in Northern Michigan driving between towns as he was spending the week judging choirs at choral festivals. My mom had been calling him but the reception in Northern Michigan was so poor that he kept dropping calls and he didn't know if the baby was okay. He was pulled over on the side of the road when I reached him and I was so overcome with emotion that I couldn't get any words out. I remember standing in the visitor's waiting area blubbering and crying, trying to tell him that he had another granddaughter to worry about. It took me forever to get the words out and I can remember everyone in the waiting room staring at me while my dad was screaming through the other end of the line for me to calm down and talk. - I remember going upstairs with Kirsten to her room and making sure that she was settled for the night. I wanted to make sure that she was going to be okay but Kirsten finally told me that I could go back downstairs to see Madeleine as it was painfully obvious that I wanted to get back downstairs ... I kissed Kirsten good night and raced back to the NICU.- I remember finally leaving the hospital sometime after midnight and going over to our good friends' house for take-out Chinese. I hadn't eaten all day and the cold Chinese was just what the Doctor ordered. I was exhausted but could hardly sleep, calling the NICU throughout the night for updates on Madeleine.
I could go on as most reading this blog are well aware that I can talk about Madeleine for hours on end. So, how the heck have two years passed? It's strange because being a dad feels extremely natural to me and I really struggle to think of myself without the label "Dad.". At the same time, has it really been two years? I think of all the challenges Madeleine faced, all of the surgeries, all of the true heroes we met at Holy Cross Hospital and then Children's hospital, all of the milestones that Madeleine has reached (yes, I'm aware that I'm woefully behind in updating you on her progress. Trust me, she's doing great) and all of the amazing moments when I walk into a room and I know that Madeleine's toothy, dimpled grin is for her big old goofy Dad and I guess it really has been two wonderful years... I guess I'm just one heckuva lucky guy. Happy Birthday Madeleine!

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