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...