Adventures in Toddlerhood

Getting Bigger

2010-06-19T21:25:00.004-04:00

Maddie is getting bigger and bigger and braver and braver every day. This week we went to the carnival at Mike's parents' church. There was a ride that I thought Maddie would like and I expected Mike to ride with her on it...well i didn't realize that there were strict height requirements, such as no one over 48" could ride and no one under 30" would be allowed on. Well Madison is over 30", so on she went. I was expecting her to be okay for the first minute or two, but after realizing she was by herself would get upset. Not my girl. She was very serious and held onto the strap, but never got upset. Of course our camera had no batteries in it so we couldn't take pictures, so we decided to go back tonight (after making sure we had charged batteries LOL).

This is her "I Like The Ride" Face LOL

Also my parents had Maddie for the night last night so we took advantage of that and decided we would try and convert Madison's crib into a toddler bed! Usually she climbs on her little stool and grabs onto the crib bars when she is ready for a nap, so I thought we would see if she would enjoy the freedom of being able to get in (and unfortunately out of) her own bed. Tonight is the first night and so far she's been okay. Hopefully she will be okay when she wakes up in the morning! As you can see from the picture she was tuckered out from the carnival, so we just let her sleep in her dress!

Happy 3rd Birthday, Aidan!

2010-05-16T02:05:00.000-04:00

Today is your Birthday,and like many more
We will always love you ,even more than before.
We can't buy you new clothes,or buy you new toys:
We can't give to you anymore new joys.
We can't hold your hand and say I Love You!
We can't hold your hand and tell you why the sky is blue.
You are not here with us anymore,
for you have went thru that other door.
When God took you from us and chose you for him,
We thought our world would come to an end.
It almost did and we felt incomplete.
Then God gave to us some tiny new feet,
When we hear her pitter-patter,
We think of you always and we know that life matters.
We can't hold you in our arms and give you hugs and kisses;
We can only hold the memories of the days that we've been missing.
We can hold the memories of how you were so brave,
and how we played all those baby games.
We can still hear your laughter although it's years after.
We will meet you at this very spot, whenever we want to be with you in thought.
Today is your Birthday and now you are three,
We think of how much time has passed since you sat upon our knee.
We think of you often, atleast once a day,
We will love you forever, forever and always.

Happy Birthday to our little angel. Gone but never forgotten!

Three years ago I was getting ready to meet our little man. Our world was so full of hope. We knew the beginning of his life would be tough, but in the end he would be a "normal" little boy. He was taken far too young. There would be no "and they lived happily ever after" at the end of his fairytale. Every day with him was a gift. When Madison entered our lives a new piece of our heart was born, but a new piece of our hearts would break too. Every time Madison reaches a new milestone we realize just how much we missed out on with Aidan. Something so simple as a first tooth popping through.

This year we are planning of having a simple celebration for Aidan. We are planning on going to a street fair tomorrow and then to have a picnic lunch at a park where we can release 3 balloons to wish Aidan a happy birthday.

13 months old!

2010-05-07T21:51:00.002-04:00

It's hard to believe that Madison turned 1 year old last month! Seriously, where did that year go?? So what is going on in Maddie's life? She is quite the character and definitely has her own opinion on things already.
1. She started walking about 3 months ago and is almost at a run now.
2. Her first word was Pop Pop, and she says Momma a lot and Da, which is good because she used to say Mike instead of Da.
3. She has 8 teeth, 4 on top and 4 on the bottom.
4. When she turned 1 year we figured it was time to cut the 2am bottle and were prepared for quite a battle for a few nights. Surprisingly, she cried for about 5-10 minutes the first night and that was it. She still wakes occasionally because of a wet diaper but for the most part she sleeps from about 7:30pm until 6:30am. We were still planning on giving her the before bed bottle, but within the first 2 nights she weaned herself from that bottle as well! I was so proud of her.
5. This week she just learned where her nose is...so if you ask her "where's your nose?" she points to it...ok it's more really pointing under her nose around her upper lip..but i figure it's close enough LOL.
Some of her favorites:
- broccoli! Maddie loves her veggies and fruit..it was so funny the other night we had tacos and out of all the food on her plate, the only thing she wanted was tomatoes!
- books! Madison LOVES to look at books. Her old favorite was Goodnight Gorilla, literally we'd read it 3 times in a row atleast twice a day. Now she is enjoying her lift the flaps and "feelie" books.
- pictures! She loves to look at pictures of people, especially if she is in the picture. If there is a picture frame in her reach she will pick it up, smile at it and kiss the picture and then carry it around for a bit.
- animals! Maddie goes crazy for dogs, cats, birds. For her birthday she got a little cow and she loves to make me say Moooooo. She also knows her moo cow...one day I asked her where her moo cow was and she scanned the room, picked it up and ran it over to me..she's a smart cookie! At our new place, we are steps away from a river and there are swans and ducks that we see every once in awhile, so we bring them bread. Madison enjoys feeding them (and herself). One day we were feeding the ducks and they started quacking at her, omg she was in heaven. I can't wait to take her to Animal Kingdom when we go in September, I forsee us going on multiple safari rides and standing for long times staring at the gorillas and tigers.
- dancing and music! Whenever Maddie hears music she starts bopping around and her face lights up.
- balloons! this obsession started on her birthday and now she has a "balloon radar". Whenever we pass a balloon, she reaches out for it and says "ah!" luckily no tantrums have resulted yet :)

Anyway, enjoy some pictures below! By the way, yes that is a potty Madison is sitting on in the last picture, no we are not actively training her...I'm just trying to get her used to the idea of sitting on the potty and what we do in the bathroom, etc. I just happened to see the pink frog potty at the store the other day and Maddie liked it, so I figured I would pick it up to be prepared. Plus it gives her something to do in the bathroom because she HAS to follow me in and so the potty keeps her out of trouble.

Fall is Here!

2009-10-22T19:58:00.002-04:00

Fall is officially here, and what would fall be without some pumpkin picking!! We went with our besties Kristin and Jason and their 3 month old son, Ryan. It was quite an adventure finding the "perfect pumpkins" but we all left happy with our pumpkin families.

I want this pumpkin, Daddy!

Madison and Ryan relaxing in the pumpkin cart

Every day Madison surprises me more and more with her new abilities. She is eating solids 3 times a day now, her faves are sweet potatoes, peas, banana orange medley and pear strawberry banana w/granola. She used to be a super messy eater however she has gotten so much better in the last week or so and now most of the food makes it into her mouth. She has just started drinking apple juice as well so her formula intake seems to be less and less every feeding. Madison is also becoming a lot more mobile. She is able to lay on her belly and push her butt up in the air and pull herself with her arms, she is quite the little inchworm! I had video of this but somehow it got lost in the camera, I will try and video it again to show everyone.

Remember Me With Love...

2009-10-15T00:12:00.003-04:00

October 15th is Pregnancy and Infant Loss Rememberance Day. I found this poem/letter that the Share Group mailed out to me and it struck quite a cord with me.

I have taught you about love in a way nothing else possibly could. Don't waste this lesson. Use the love you still possess to give to others. Comfort others who've had a loss; do it in my memory. And beside that, a little bit of me lives on in each person you touch. You have the power to make my legacy one I would be proud of.
Light a candle, buy a rose, and perform an "act of kindness". Simple things. But then, our love is so great; no rememberance could ever be large enough to show how much you love me. For true love has no boundaries.
Contemplate the many gifts I've left, and how I've affected your life in a good way. I've shown you how precious life is and have given you a greater appreciation of it. I've let you discover how strong you really are. I hope my short time here has made you discover what's really important. Has it made you a better person? I hope so!
Your faith has been tested and, hopefully, strenghtened. I hope your heart is filled with peace. Most of all, know that our love is eternal!
If you think of me today I'll be rejoicing from above to know you have remembered me!

Doctor's Appointment

2009-10-06T11:14:00.002-04:00

Maddie had her 6 month check-up today and oh what an appointment it was! I think her doctor had 2 new assistants because they both seemed a little frazzled by 10am.
Maddie's weight height and head circumference were checked. She weighs 18lbs 3oz, she is 27 inches long and her HC was 17 1/4.
So the doctor comes in and says "let's see where she falls on the growth chart" I joked and said, "well she gained 2lbs in a month, i'm pretty sure she is off the chart at this point."(Maddie is usually in the 90th to begin with). So she says it is 15th for weight *insert wide eyes here* and I said there is NO WAY and continued with other crazy percentiles. I reinterated that there was no way that Madison could be 15th percentile for weight and the doctor agreed that there must have been a mistake somewhere...so I said to her "maybe they got entered into another little girl's chart because at first the assistant thought she was doing "Brianna's" measurements and I told her that it was Madison not Brianna and the girl was like oh ok. Sure enough the doctor looked and her assistant entered it into the wrong chart. The doctor apologized and went to get the right information. Came back a minute later and Madison is in the 89% for weight, 87% for height and 93% for HC.
So we continue with the check up and I asked her some questions about Maddie's eating habits and such. Now Maddie has been eating solids 1 time a day. She said that Madison can eat solids 3 times a day!!! I swear our pedi has some vested interest in Maddie becoming world's biggest baby or something LOL...i mean the girl gained 2lbs in a month eating just 1 time a day. But I agree with her that the more solids she eats the less bottles she will eat and hopefully will cut out the night feeds because as of right now she is eating 5 times a day, however 2 of the times are at night because she falls asleep before she can get her "bedtime bottle". The doc also thinks that she can probably move up to stage 2 foods...clearly we have been holding Maddie back lol.
Madison also got 3 vaccines and she took it like such a champ, first was an oral vaccine, then 2 shots and she didn't even cry until she started to get the bandaid :)
We also need to start calling her Madison more often. I don't mind the nickname Maddie, however she looks when someone says "Maddie" however when we call her Madison she doesn't recognize that we are talking to her, so we have to make a more conscious effort to call her Madison.

6 months old

2009-10-05T10:36:00.002-04:00

So Madison has turned 6 months old over the weekend, where has the time gone??
Some of Madison's favorite things are:
1. smiling at random strangers (this helped big time on the flight home from Rome, because she was doing her shriek talking where she isn't upset, she is just screeching, for some of the flight,which i'm sure for some passengers wasn't so cute/funny)
2. her Rainforest Jumperoo
3. eating solids (so far she has tried carrots and sweet potatoes...today she will be trying squash, she likes the sweet potatoes more than the carrots)
4. the "Hotdog Song" from Mickey Mouse Clubhouse (whenever she hears it she lights up like a christmas tree)
5. anything "daredevil-ish" such as hanging upside down, being thrown from person to person, being thrown in the air.
6. Razzberries, she loves these so much she has learned to do them herself!

Some of Madison's not so favorite things are:
1. being horizontal. When she learned to roll over she never wanted to be on her back, now that she has learned to sit on her own and be held standing that's all she wants to be.
2. Uncle Dave's "elephant noise". The first time he did it she cried i think probably the hardest she has ever cried before. Now he just starts the noise and she starts to whimper.
3. Oatmeal. Ever since getting solids oatmeal is a thing of the past.

On Sunday it was so beautiful out we decided to go out to the park. Madison absolutely LOVED the swings as evidenced by the picture below

We also got Madison's 6 month/fall picture. She really liked the pumpkin ;)

Not a Food Fraidy

2009-09-28T16:24:00.004-04:00

At one point I was concerned that Madison would only like to eat formula and we would never graduate to cereals or solids. Clearly by the following photo that is not the case anymore :)

Today is the first day that Madison ate all of her oatmeal and bananas at breakfast and 1/2 container of carrots for dinner and it was the first day she allowed us to feed her the food before the bottle. Usually she is too hungry to bother with food first. Our little girl is growing up way too fast :(

2009-09-09T20:24:00.004-04:00

Clearly I'm a terrible updater. I need to get into the habit of writing tiny blogs a few times a week rather than wait for a lot of things to update about at once because then it just snowballs out of control!

First I want to start the update off with a sad note. Today marks Aidan's 2 year angelversary. Some days it feels like just yesterday he was in our arms and some days it feels like a lifetime ago. I recently found a quote that I love... "Death leaves a heartache no one can heal, love leaves a memory no one can steal." We have so many precious memories with Aidan, each one more special than the next.

While it is a sad day, it's also a happy day as we are leaving for Europe for 2 weeks. Aidan will be travelling with us. We have a few ideas of where we will leave him...the grand canal in venice, the vatican, etc. We will be sure to post pictures after we return.

Maddie has just turned 5 months going on 5 years....every day she surprise me more and more! Since our last update she has been baptized, went on vacation to Virginia Beach and is about to start her world travels beginning with italy. She has been sleeping through the night since she was about 3 months old, except to wake up for a midnight snack but then goes right back to bed. She is probably one of the happiest babies i've ever met...even when she was sick last week she was constantly smiling! She has started within the last month trying out cereals...just 2 days ago for the first time ever she was actually excited to eat the oatmeal and bananas, usually she would just cry after a few spoonfuls. Madison LOVES to babble and be heard, once she starts talking I think the world might need earplugs because she is going to be talking some ears off...she is definitely an opinionated little girl! For the last few months she has been rolling over from her back to her tummy and since learning this new skill has become a bona fide tummy sleeper, I used to fight it but now I just go with it...it's a lot easier and the doctor said not to worry about it because she has great head/neck control and easily rolls over. Speaking of doctors...Maddie went to the doctor on Saturday and she continues to stay in the 90th percentile for weight and height, 16lbs 3oz and 26 inches. She is up to date on all her immunizations and so far she hasn't had any reactions to them!

For a few months now Maddie has loved to stand while being held, which has now transitioned into standing holding onto furniture. I have a feeling she will completely skip crawling, however we do try and get her to do it as much as possible. Over the last week Madison has begun trying to sit up all by herself. She can hold steady for almost a minute and then starts to wobble. Just last night she sat in a high chair for dinner, I was super impressed by how well she did!

Maddie also has her first baby crush! Our friends Kristin and Jason had a baby boy on July 12th and their son Ryan is just the cutest, the first time they met that they were both awake, Maddie ate Ryan's toes...i guess that is her way of saying I love you :) LOL

Oh well, we have to leave for the airport in about an hour, so I need to wrap this up....pray for us to have a safe trip while in italy! Will post all about our european adventure after we return!

I have only a couple photos to add right now because most of them are on our SD card which is packed in the suitcase in the car already...love to all!! (Mom, I'm sure you didn't think I'd post this before we left for Italy :) )

Madison taking a snooze!

Madison at her baptism, with her Godparents, Brian and Esmeralda

Drooly Julie

2009-06-24T15:34:00.003-04:00

so it was a nice sunny day yesterday which is a nice change since I've felt like we moved to Seattle and no one told us, so we decided to head outside and enjoy the sun and get a few cute pictures along the way.

Maddie also has been enjoying lots of tummy time and just starting to figure out that her toys are there to entertain her. We've also moved into the "if i can hold onto it, it will eventually make it's way into my mouth phase" which has quickly moved into the "lick everything i come in contact with phase". it's quite comical actually, but since it's so new i'm sure the comedy will soon wear off LOL.

This weekend is Maddie's baptism. I just found out today that it will be performed by Deacon Joe. I'm excited about this, I love Deacon Joe, and unfortunately he understands our pain all too well as he lost a baby as well. Pray for nice weather on Sunday! Oh and tomorrow is Maddie's first "professional" photo shoot. Mike is super upset about this because he feels that all the pictures he takes are a lot better than professional :) So pray that she cooperates and doesn't fall asleep or get cranky mid-way through LOL.

2 months...

2009-06-10T23:03:00.009-04:00

I swear that on our dry erase board it has said for the last two weeks : Update the blog!

I'm not entirely sure how many people even still follow the blog, however for those faithful few I will continue to try and keep updates coming.

So, what is new and exciting in Maddie's world?? Well pretty much everything!

She has been able to hold her head up for weeks, however she is really starting to be able to keep it up for longer periods of time. She LOVES to be on her belly and when she is there she is always kicking her legs trying to propel her body forward. Maddie has also been trying to work on rolling over. She seems to have an easier time rolling from her back to her stomach, which is harder to do, than from her stomach to her back. She will definitely be a tummy sleeper!

Just a couple days ago, Maddie discovered her hands and they have been in her mouth pretty much ever since! Sometimes she even spits the paci out so her hands can go in.

We also got Madison a Bumbo chair. I originally thought they were a waste of money, however she loves to sit in it. I'm not comfortable enough to leave her alone in it yet, but I can see this being helpful in a few months when I need to throw a load of laundry in, since you can buy a table that snaps on top of it, just put some toys on there and voila! instant independent playing.

Maddie also is quite the conversationalist. She enjoys "talking" to us about what she did that day. I've read that to help babies begin to understand words and how conversation works that you should ask them questions, wait for a "response" and then respond back to what she said. Maddie has really taken to this and I've been able to have atleast 5 minute "conversations" with her.

Madison also has a new favorite game: Peek-a-boo! One day she was sitting in her bouncer and I threw a receiving blanket over top of her head, pulled it off and said in a "very happy" voice Peek-a-boo and she just about cracked up! Now she even tries to pull the blanket off to get the "peek-a-boo!" quicker.

Since summer has unofficially began we've had lots of time to play outdoors. Madison has even tried her hand at swimming--unfortunately, she slept through most of it, although I take that as a good sign of her liking it :) She also likes to go for stroller rides around the neighborhood. Tonight we even took her to St. Leo's carnival. There was so much to see and do, she fell asleep right in her snugli about 5 minutes after we got there LOL. We will try again on Saturday.

We also have been trying to get Madison on a loose schedule- although bedtime is always between 8:30 and 9:30, except for when she stays at Grandma's who lets her stay up until 11pm!! During the day she is usually up between 8 and 9 and then will play for a good hour. After that she fights sleep, even though you can see she is tired, and will finally nap for about 30 minutes. Then it's storytime/relaxing with mommy. After lunch, she plays in her crib until she falls asleep. Then its up to either eat or play games, depending on how long the nap lasted. By 6:30-7:00pm she has finally fought sleep long enough and will usually take an hour nap before bedtime routine starts of bath, lotion & pj's, story, eat and cuddle with mommy. I must say that even though she fights sleep all day long, when bedtime comes, she is out for the count! At just 9 weeks old she is sleeping most of the time for 5+ hour stretches.

On Aidan's birthday, May 16th, we had a picnic with friends and family to celebrate life! I can't believe he would have been 2 years old already!! We had a balloon release to send Aidan birthday greetings and it was absolutely beautiful. During the release it was perfectly sunny out, yet still raining! I believe it was Aidan, crying tears of joy from all the love he felt!

Early in the month of May we got an invitation to a banquet to honor families of organ donors. We decided it would be a nice opportunity to take Madison on her first plane trip (since she will be flying out to Europe in a few months) as well as see where her brother spent some of his life. We received a medal from the governor of Minnesota, Tim Pawlenty and his wife, as well as got our photo taken with them. The governor's wife told us how beautiful Madison was when we were up on the stage. We then told her we were here because her brother donated his heart and she got "the look" on her face. The "I'm so sorry, I'm not sure what to say, but that must be heartwrenching" look. I always feel bad for people when we tell them about Aidan. No one really knows what to say, and I understand that. A few years ago, if a person I knew lost their baby, I'd have no clue what to say either.

The next day, we showed Madison some of Minnesota AKA The Mall of America and Stone Arch Bridge, where you can see the new bridge that replaced the one that collapsed while we were out there. While driving around, Mike made the comment, "wow there are only two season out here: Winter and Construction!" and it's the truth, every road we travelled had some sort of construction going on....some of it was the same construction going on 2 years ago!

Anyways, that's pretty much our lives since the last update... hope you enjoy these ramblings and the pictures below.

Maddie in her Tutu

I'm one month old!

Happy Birthday, Aidan!

Family Shot at the Pool

Maddie and Daddy

Taking a Dip!

Maddie and Mommy!

Say What?!

Happy Baby!

Chillin after a bath

Trying out her Bumbo

I like it!

Apologies

2009-05-12T23:55:00.002-04:00

I didn't realize how difficult it would be to update everyone as much as I would like to. As tough as it is to have a child in the NICU, you have a lot more time to throw a quick update on the web.

Madison is a complete joy! She has her moments, however Mike and I could not be luckier, Maddie is an angel of a baby. She lets us sleep quite a bit more than I first expected. The only time she gets overly fussy is if she is hungry or has been up too long and is overtired.

My favorite moments of the day are:
1. after Madison has her early morning(between 5 and 6) feed, she never wants to go back to sleep in the cradle, so we bring her into our bed and have Maddie cuddle time and we get a few more hours of sleep.
2. just as Madison is about to fall asleep, sometimes she gets this big goofy grin on her face as she is drifting off...always puts a smile on my face!
3. Maddie is a cuddle bug and she loves to lay on her belly on people, however when she lays on me, she lays on her belly but sideways just like she did in utero.
4. when Madison is being held and she is looking around the room, she gets wide eyed as she is absorbing everything around her.

I promise to try harder to give more frequent updates and add pictures. I plan on adding in the near future "Things I've learned along the road of motherhood" to our blog.

Deadly Drycleaning

2009-05-06T22:29:00.003-04:00

So after a party where I decided to clean up nice and wear a suit I put my suit on the dining room table with my SD cards in the pocket. The suit, which was sitting around, my mother assumed needed cleaning and put it in the dryel bag with the SD cards still in the suit pockets. 2 cards survived and 1 didn't quite make it through. So I glued it back together with some duco cement and the 8GB card worked again. Unfortunately, the cement didn't hold it together for very long and I moved on to Super Glue. With our Nikon D90 currently getting warranty repairs and us unable to find our old camera, we bought a Samsung 10Mega Pixel "Mickey Mouse" camera. [Mickey Mouse Camera == any camera that isn't a Digital SLR]. Laura had warned me not to use the cemented / super glued / dryeled SD card but I couldn't resist I wanted the other 2 cards for the DSLR. It worked fine until I tried to remove the card to put the pictures on the Internet for Laura's latest blog post. Some of the pictures we lost because of my mistake of using the decrepit old busted card:

Madison 2nd bath Pictures which included her deciding the best time to pee would be when she was naked en route to the bathtub. Soooo she sprayed her daddy a bit.

Madison holding her head up playing on her activity mat.

Madison looking in the mirror at her cute self.

:-(

Laura is MAD

Snugli

2009-04-24T14:33:00.003-04:00

So I wanted to tell everyone how much I love having Madison in a Snugli. Laura gets mad cause I hold her in it for about two hours while I play on the computer then pass her off whenever she gets cranky. I'm sure this post will be used against me but I don't care I love when Madison is sleeping on my chest!

Happy Easter

2009-04-12T00:38:00.000-04:00

Madison just wanted to tell everyone:

Hospital Photos

2009-04-11T12:57:00.000-04:00

We just got the hospital photos in the mail today. We cracked up when we saw how cute they were. She looks like she is saying, "back away this is my bear now!"

How Quickly a Week Passes

2009-04-10T17:22:00.009-04:00

It's hard to believe that Madison is already a week old!! Last week this time I was in recovery and Mike was taking his first couple hundred pictures of her. We've joked that pretty soon Madison will think that it's normal for lights to constantly flash in front of her face and that the camera is a 5th family member.

On Thursday Madison met 3 of her cousins, Ashley, Sarah and Maria. They were so excited to finally have a girl cousin. Madison loved all the attention and kisses she was getting.

Ashley & Madison

Sarah & Madison

Maria & Madison

Well as I said earlier Madison has spent her days with the flash bulbs popping in her face all day long. It seems every day we are trying to come up with some sort of "photo shoot". These are some of our favorite shots from the different "shoots". Enjoy

How big is Madison? SO Big!!

Bed of Roses

Madison trying out her swing

Daddy's Little Girl

Madison with Aidan's bear Champ

Madison's First Trip to Target

Our first attempt at Easter photos

As you can see it's been a busy week!

After a bit of a hiatus...

2009-04-08T17:10:00.003-04:00

Now that Madison has arrived Mike and I plan on updating the blog a bit more, filling everyone in on some of the daily happenings with us, just like we did with Aidan. So feel free to tell friends and family to stop by and see what we're up to.

Since being home we haven't really done much other than just trying to figure out how to get through the day on as little sleep as possible. That being said, Madison is breaking us in gently. The first 2 nights she woke up for a few hours in the very early morning, however this morning she slept through most of the night, waking only to eat and be changed so I was able to catch up on some much needed sleep. She woke up around 9am and we checked out her new room, trying out her swing and playing with some of her hand and feet rattles. We sang some songs and read a story about Easter. After that Madison was wiped out for the rest of the morning.

Mike came home from his unemployment meeting and fell asleep. Madison wanted to join Daddy and an adorable photo shoot insued.

Below is the birth story I posted on facebook:
Alright well we just got home today, we didn't have internet while at the hospital so you know how much it was killing Mike, but Mike is holding Madison right now so I figured this would be the best time to try and write everything down for everyone.We got to the hospital on Friday around 1pm and boy was Labor and Delivery hopping!! It seemed like everyone was trying to have babies in time for the weekend. Our nurse said that we might be getting pushed back a bit, I was nervous already so this wasn't helping any. Then we heard that we were still almost on time they were just trying to find an assistant to help the doctor with the section...I saw a look in Mike's eye and told him, "do not volunteer yourself, you are not assisting him!" LOL about 15 minutes after 3pm the doctor came in and apologized for being late. His excuse cracks me up whenever I think about it- he ate a burrito for lunch and fell asleep! I told him that it was fine, I'd rather him be well rested than doing the surgery tired. So they took me to the operating room, got me all prepped, gave me my spinal and then anxiety took over. They gave me extra oxygen and it made me feel like I couldn't breathe (weird i know) I started to feel VERY nauseous, the docs and nurses calmed me down and then I got really sleepy. They brought Mike into the room and soon they began. I'll spare you all the gory details, the end result was Madison arrived at 3:56pm perfect and healthy. About 2 hours later I got to hold Madison for the first time, I looked at her and saw a female version of Aidan staring back at me, she was the most beautiful sight I had ever seen! All of the medication made me super tired and nauseous, so I don't really remember a lot about Friday night. Mike's parents came and visited and about an hour later they took Madison back to the nursery to let all of us get some well deserved rest. They kept her until the following morning.Saturday was a whirlwind!! Madison had a never ending supply of visitors coming to love on her. We appreciate all of the love and support from everyone that came to visit, it really meant a lot to us. Around 10am, the nurse came in and told me I could lose my IV and try to walk. I remember all the horror stories of people telling me make sure I got up and walked as soon as possible, how sore I would be and more. So I prepared myself for the pain and stood up--it wasn't bad at all, a little sore and uncomfortable, but I was so happy that it wasn't severe pain like I was expecting. I was so happy because the bed was NOT comfortable, so I didn't spend a lot of time in bed on Saturday. After all the visitors left, my nurse came in and asked if I had rested, I told her no, she said, well now you have orders to put your feet up the rest of the night. She said if I push myself too much I will regret it in the morning. We decided to try our hand at keeping Madison for the night. Can I just state for the record right now before this changes but we have the world's best baby!! She woke up a few times when she was hungry but overall she didn't cry super loud and I definitely got more rest than I expected to. Sunday brought another round of visitors and cabin fever definitely started to set in, so when there was talk of me getting discharged the next day I was all over that. The doctor was very pleased with my progress and said I would probably get my staples out the following morning. Madison got a clean bill of health from her pediatrician despite having a slight case of jaundice, she didn't have to be under the lights or anything though. Sunday night was pretty uneventful, just like Saturday she woke up only for about 2 hours and didn't have any major meltdowns. This morning we got the all clear that both of us were free to go. We had yet to get a hospital photo taken, so we made sure to do that before we left. The photographer was too funny. She said Madison was so animated and there were so many good pictures she couldn't decide on just one. She had us sign consent forms to enter Madison into a Cutest Baby contest which made us swell with pride and said she might use some of the photos in sample birth announcements. I couldn't decide on just one pose, so we got 2 of them, they are just too funny and no words will do them justice. Mike agreed to get the 2nd pose only after I said he could get a new hard drive...wasn't too excited about that but had to do what I had to do LOL.

Our Chunky Monkey

2009-02-04T19:50:00.007-05:00

Went to the doctors on Monday and had another ultrasound. We got the 100% confirmation that Madison is indeed a girl :) Janie also looked at my placenta and it is still low. She tried to show me, it's a lot more confusing than looking at the baby LOL, what makes it a previa. The basic jist of it is currently the placenta is not completely covering my cervix (a good thing) it's on the very edge, however if I were to go into labor when my cervix begins to dialate it would then begin to overlap and obstruct the baby from coming out. So while Janie isn't a doctor she is 99% sure that we will be discussing c-sections at my next appointment.

Janie then began doing measurements and Madison is measuring 1-2 weeks ahead of schedule. She is in the 60th percentile for her age. So Janie estimates that Madison will be between 8 and 8.5 pounds at birth. While this could be true, I think she will be in the high 7's. They also thought Aidan would be a little bigger and he was a teeny tiny 6.2 pounds. So while Madison is having adequate weight gain, I'm actually losing weight!! Since my last appointment in January I lost 8 pounds and in the first trimester I had lost 15 pounds for a grand total of 23 pounds lost so far. I think I may be one of the few pregnant women in the world who will actually probably walk away from this pregnancy weighing less than I did when I got pregnant. woohoo!! enjoy our little chunky monkey :)

hand always up at her face

practicing her "call me" sign

the "bubbles" by her mouth is actually the umbilical cord

look at the size of those chubby cheeks!!!

Lots of Progress

2009-01-25T21:31:00.004-05:00

Well a few posts ago I said I would upload photos of the nursery when it was finally done and after weeks of working on the room, it is finally mostly complete! Mike and I worked really hard on getting it set up and I'm so proud of how it's turned out. We have a few more finishing touches to finish up with but honestly the only thing really missing is Madison LOL. Enjoy the pictures..

On another note, after MUCH deliberation we have finally found an urn for Aidan! It's not exactly what I wanted, however I am so happy with the decision we made. He is now hanging out in a glass cabinet in our room where we have put some pictures and other important mementos of Aidan...

2009-01-23T11:24:00.002-05:00

Two years ago today Mike and I saw Aidan wiggling around on the ultrasound monitor for the first time, it was definitely love at first sight!

Ohana...

2009-01-11T08:03:00.005-05:00

I thought of you and closed my eyes
And prayed to God today
I asked "What makes a Parent?"
And I know I heard Him say.

"A Parent has a baby"
This we know is true
"But God can you be a Parent,
When your baby's not with you?"

"Yes, you can," He replied
With confidence in His voice
"I give many families babies,
When they leave is not their choice.

Some I send for a lifetime,
And others for the day.
And some I send to feel your womb,
But there's no need to stay."

"I just don't understand this God
I want my baby to be here."
He took a deep breath and cleared His throat,
And then I saw the tear.

"I wish I could show you,
What your child is doing today.
If you could see your child's smile,
With all the other children and say...

'We go to Earth to learn our lessons,
Of love and life and fear.
My Parents loved me oh so much,
I got to come straight here.

I feel so lucky to have Parents,
Who had so much love for me.
I learned my lessons very quickly,
My Mommy and Daddy set me free.

I miss my Parents oh so much,
But I visit them every day.
When they go to sleep,
On their pillow's where I lay

I stroke their hair and kiss their cheeks,
And whisper in their ear.
Mommy and Daddy don't be sad today,
I'm your baby and I'm here.'

"So you see my dear sweet ones,
your children are okay.
Your babies are born here in My home,
And this is where they'll stay.

They'll wait for you with Me,
Until your lesson's through.
And on the day that you come home
they'll be at the gates for you.

So now you see what makes a Parent,
It's the feeling in your heart
it's the love you had so much of
Right from the very start

Though some on earth may not realize,
you are a Parent.
Until their time is done.
They'll be up here with Me one day
and know that you are the best one!"

Adapted from What Makes a Mother? written by Jennifer Wasik

"Ohana means family, family means nobody gets left behind. Or forgotten.
This is my family. I found it, all on my own. It's little and broken, but still good. Yeah, still good."

Another New Year

2009-01-02T12:46:00.003-05:00

Prayer for Strength and Wisdom
Grant me the strength from day to day
To bear what burdens come my way.
Grant me throughout this bright New Year
More to endure and less to fear.
Help me to live that I may be
From spite and petty malice free.
Let me not bitterly complain
When cherished hopes of mine prove vain,
Or spoil with deeds of hate and rage
Some fair tomorrow's spotless page.
Lord, as the days shall come and go
In courage let me stronger grow.
Lord, as the new day dawns today
Help me to put my faults away.
Let me be big in little things;
Grant me the joy which friendship brings.
Keep me from selfishness and spite;
Let me be wise in what is right.
A happy New Year! Grant that I
May bring no tear to any eye.
When this New Year in time shall end
Let it be said I've played the friend,
Have lived and loved and labored here,
And made of it a happy year.
~Edgar A. Guest

Happy New Year everyone!
So most of you probably know by now that we are having a baby GIRL, atleast we are 95% sure its a girl. Janie said in the envelope that we will check again on my next ultrasound (February 2nd). We have decided on the name, Madison Elizabeth. I don't really have much more new information other than that. I went to the doctors and the heartbeat sounded good (in the 130's). We also have a maternity ward tour scheduled for January 18th. We also began working on the nursery, so after its finished I will post some pictures.

And we're having a......

2008-12-10T10:41:00.002-05:00

SURPRISE!!!

Well it seems the girls won out over the boys in the poll. During the last week I thought the boys would catch up but in the end there was another couple votes for girls. I know this is going to upset everyone, but they will have to wait just a bit longer to find out if they were right or not. I went to the doctors on Monday and had "the ultrasound" however, i told Janie not to tell me if its a boy or girl but to write it on a piece of paper and seal it in an envelope. When she got to the point of the scan where she was looking she even made me look away from the screen so I don't have ANY information. We will all find out later in a surprise reveal :) When i told Mike he used mailing tape to completely surround the envelope and we both had to sign both front and back of it to know that the envelope wasn't tampered with.
Getting back to the ultrasound, this baby is crazy(but in a good way of course), or maybe we have a future thespian!! S/he was swimming all over the place, never staying put long enough to get a "great" picture but i was laughing the entire time. Like I said during the last ultrasound, this baby just like Aidan, always has at least one hand up at their face. At one point you could see the fingers moving all around and i swear the baby was waving at us! S/he was laying on his/her back, legs bent at the knees and feet crossed at the ankles, let me tell you, they were some big feet, I think the baby will be tall, which is weird bc Mike and i aren't exceptionally tall, so maybe its some reccessive genes working there. Then Janie tried to get some 3D shots and, i kid you not, in one of the pictures the baby is giving us the middle finger! So we are scanning around and Janie had a profile of the baby and she says to me,"Aww, look the baby's mouth is open" and not 2 seconds later BOOM mouth shut tight! So this child has excellent hearing lol. As far as all the technical and health issues, the baby looks great, still a very nice full stomach, good kidneys and bladder. We watched the heart beat, it was amazing, i don't remember them getting that close in with Aidan's scans, but it was truly very cool to watch. All 4 chambers were present and the valves looked great, no sign of a murmur or anything. Spine looked good as well as the brain. As far as the umbilical cord goes, still both arteries and vein present, so everything's normal there. The only slight downer during the ultrasound was my placenta. Last time as well as this time it was pretty low, covering my cervix, however it was a good size and they were happy with that. The reason its a downer is because if it doesn't move up (more accurately it doesn't move but looks like it does as the uterus expands) i'll have to have a c-section. I'm not nervous about a c-section, just makes having another baby more difficult in my opinion. 9 times out of 10 you will have to have a c-section again, which is more risky than a 1st c-section. So pray that when i go back for my 30 week scan the placenta has moved :)
I got lots of pictures from this scan, so i will try and have Mike post them later today or tomorrow.

Guess the Gender Game

2008-11-14T11:06:00.005-05:00

Alright, well it seems alot of people think they know or are guessing whether i'm having a boy or a girl, so i thought it would be fun to list all of the symptoms i've had throughout the pregnancy and make a poll for people to vote on. after you vote, feel free to leave a comment with your prediction and why you came to that answer, oh and leave a name, its difficult trying to figure out who all these anonymous users are ;)
- carrying high
- nausea during 1st trimester, vomitting during 2nd trimester
- leg hair is growing super fast
- fairly moody
- feet are always cold
- heartburn during 1st trimester, nothing now
- very sensitive to different smells
- could sleep for days
- sore boobs during 1st trimester
- was craving salty food during 1st trimester
- foods i like to eat: cheese (alot), pasta (not alot of red sauce) and veggies
- aversions to garlic and fried food being cooked, not wanting alot of meat
- baby's heart rate is 155-157
- when i placed a needle and thread over my belly it swung in circles
- mike has gained weight along with me (sorry babe ;) )

if there is anything else you need to know to make your determination let me know and i'll try as best i can to get you the answer
Tell all your friends about the poll, the more guesses the more fun :)

Happy Guessing!!

Return of the Sonic Jelly

2008-11-12T17:28:00.002-05:00

Well i've noticed we haven't posted for awhile, so figured i probably should. Mike had told me he had something he wanted to post but then when i asked him about it again he said he forgot what it was. oh well, maybe it will come back to him at a later date.
Anyways, as you can tell, i'm now 18 weeks pregnant. it was going pretty fast at the beginning but then after about 13-14 weeks it has slowed down considerably. hopefully with the upcoming holidays and theresa's wedding, time will start to move faster. i was telling a friend the other day that parents who have lost a child shouldn't have to wait so long for the next one, the time should get cut in half for us, i'm not saying i want a preemie but our bodies should turn into microwaves instead of ovens so the baby cooks a little faster lol.
Monday i had my first ultrasound, me and the sonic jelly were reunited once again. i absolutely adore the sonographer at my ob/gyn's, she originally noticed Aidan's pretty much non-existant stomach bubble. and as soon as i saw her she said how sorry she was to hear about Aidan and we caught up and then the fun began. The first thing she zoomed into was the stomach and there it was, a HUGE stomach bubble. she was very happy with the size of it, although i know that EA isn't genetic, it's still nice to get that confirmation. All the other organs looked good, saw 2 halves of the brain, all 10 fingers and toes, 4 chambers of the heart(although she won't confirm it until the next ultrasound bc she doesn't confirm all 4 until after you are 18 weeks. It was funny, just like Aidan this baby had their hand up at their head, but it was the opposite hand. Jane, the sonographer, joked saying they were practicing running up the phone bill already. There were so many similarities i could find between Aidan and this baby already. The new baby is quite a wiggle worm, whenever Jane would try and focus on a certain area, he or she would swim away or turn around, just like Aidan would. However, every once in awhile the baby would stay put and put on a little show. Because the baby was pretty small and still mostly bones, not alot of great pictures yet, but she did let me take 3 home. I also tried to see if we needed to add some pink to the nursery or not, Jane has never been wrong, mostly because she won't commit to a sex unless she is absolutely sure. She told me her thoughts and what she saw, but isn't 100% yet, around 80-90%, so she said next month's ultrasound she will know for sure, as long as the baby cooperates. Right now the baby is pretty high, swimming right around my belly button, and s/he is in a transverse position.
Right now the big debate Mike and I are having is baby names, we have decided on a middle name, its just trying to find a first name.

Remembering...

2008-09-14T18:30:00.004-04:00

I thought of you with love today,
But that is nothing new.
I thought about you yesterday,
And days before that too.
I think of you in silence.
I often speak your name.
Now all I have is memories.
And your picture in a frame.
Your memory is my keepsake.
With which I will never part.
God has you in His keeping.
I have you in my heart.

It's been a year since we've held Aidan. Yet, alot of details I can remember like they just happened yesterday. I remember how he would stretch and straighten his legs when you were changing his diaper, I remember how he'd puff out his stomach and belly button when he was really angry, I remember how pitiful he looked when we put him in the swing that nurses swore he loved, I remember how squishy his arms and thighs were, I remember how his eyes lit up the first time he saw his crib soother, I remember how chill and unimpressed he was by anything else, and how when he was seeing something new for the first time he always looked a bit skeptical. I remember how he never quite had that "baby smell" and i'm convinced the only way to acheive it would have been for me to cover him in baby powder and I didn't want to get that in his g-tube site, so I never used it. I remember how it once took both Mike and I an hour to change his diaper, his top sheet, his diaper, his entire crib sheet set and then finally a bath. I remember how soft his hair was. I remember how he constantly looked scared after he woke up from the "coma". I remember being more afraid to hold him after surgery than the first time he was placed in my arms, because I was so afraid I was hurting him when I held him. But there are things I wish I could remember that seem like distant memories, such as his cry. I try with all my might to remember how he sounded, and it's just not there.

I also remember wondering how in the world Mike and I would survive this. You hear about how most couples who lose a child end up getting divorced. I think, if anything, our relationship has gotten stronger! We joke around about this pact that we have - we can only leave each other if we can find someone who will know and love Aidan as much as we do, it's impossible!!

Comic Books

2008-09-02T23:42:00.004-04:00

I wanted to read Aidan a comic book today, even though he would only be a little over 1 year old if he was alive, I would still read him this comic book. It's was posted by Google on the Launch of there new Web Broswer Chrome. It was me being a geek wanting to share it with him. Call me a silly dad but my guess is some other dad did the same thing with his son today.

Don't Believe The Hype

2008-08-31T23:59:00.000-04:00

Alright well I will start with an update from last month. I did end up writing the letter to the recipient family, I called Life Source to make sure I didn't write about anything that wasn't allowed and the letter has sat in our room ever since. I've been lazy about trying to find a picture to include with the letter and therefore nothing has happened. My goal for the week will be to get it mailed lol.

Okay, so Mike has been bugging me to post for weeks, and when I say bugging I mean, everyday, sometimes more than once saying "When are you going to post? Can't think of anything to say?" I mean, you probably know how mean can he be lol, he is just kidding though. Some people already know, but I must say this was probably one of our best kept secrets, I was proud that we held out as long as we had. Aidan is going to be a big brother! The baby should be here around April 16th, which I'm pretty happy about. It is before Aidan's birthday, I was extremely nervous that we would get pregnant and I'd be due in May, not because it would be so close to Aidan's birthdate, but I was worried that the new baby might feel that they need to compete with an angel. That probably doesn't make much sense to anyone, but it makes perfect sense to me, haha. This pregnancy so far has been a complete 180 from Aidan's. Which brings me to the title of this post. Don't believe the hype, morning sickness has nothing to do with morning, and it certainly doesn't just stick around during the AM hours, trust me I have tried to sleep through the AM just to wake up and find the nausea waiting for me until I woke up. I've basically had this "morning sickness" for the past 3 weeks straight. I get a couple good hours here and there, but it always returns. Mike has joked with me when I am really depressed and sick that Aidan is extremely happy that he was going to have a sibling to watch over that he's dancing with the baby and because we loved to make him dance so much this is my punishment hehe. I'm hoping that this subsides by the 2nd trimester.
We are so excited to welcome this new bundle of joy, but I can't help but be nervous. Not to mention the fact that we now have to find a new "home" for Aidan. For the past 11 months, Aidan has been hanging out in a black box, wrapped in one of his receiving blankets in his crib. we certainly can't keep him there when the baby comes, and I feel terrible that he is just in the black box that he was shipped to us in, but I could never find the perfect urn, and the receiving blanket helped to make it look a little less rough. I better get on the ball, April will be here before we know it :)

The Beat Goes On

2008-07-23T01:25:00.004-04:00

So for quite a few months now, Mike and I had been wondering how the little boy who received Aidan's heart was doing. We never received any type of letter from the family and LifeSource hadn't sent us any information other than the initial letter thanking us for Aidan's donation and to let us know that it was a baby boy living in Minnesota and that he had been very sick before the transplant. We finally decided to take matters into our own hands and I contacted LifeSource to see if they could give us any type of an update on how the little boy is/if he has had any complications, etc. A week later we finally got a call back from LifeSource and the woman told me that the little boy just celebrated his 1st birthday, he is doing well and enjoys being read stories and playing with his toys. What a relief!! It gives us so much joy thinking about how a piece of Aidan is still going strong.
We really had been hoping that we would get some sort of a letter from the little boy's family at some point this year, but after doing some online research I found that alot of donor recipient families hold back writing letters for fear of opening up painful memories. That's the main reason we contacted LifeSource, I have no problem writing the family a letter, telling them all about Aidan and how happy we are that their son is doing so well. But i didn't want to do that, just in case something had happened and the little boy hadn't made it. I'm hoping to get the motivation to write the letter in the next few days. :)

On a side note, as I was writing this post I thought about one of the little boys back at the Ronald McDonald House who was waiting for a kidney transplant while we were there. We had been hoping that Aidan would have been a match for him, unfortunately he wasn't. I just checked his website and he just received a live kidney donation at the end of May! what great news!!

The Butterfly

2008-06-19T01:11:00.005-04:00

A butterfly lights beside us, like a sunbeam...
and for a brief moment it's glory
and beauty belong to our world...
but then it flies on again, and although
we wish it could have stayed,
we are so thankful to have seen it at all.

~~Author Unknown

So as most of you probably know Mike and I took another trip to Disney. Twice in one year, I truly am spoiled I know. I just feel such a strong connection to vacationing there. We are able to leave reality and immerse ourselves into a world of fantasy, it's much easier living in a fantasy world than reality, wouldn't you agree?
Anyways, getting to the point of the post... so of course we brought Aidan along with us to leave a bit of him there. Just like in Disneyland we left him with the lost boys in neverland. Got a much better shot of exactly where he is then while in Disneyland. You can see it below. We also wanted to find a new spot, so in typical Laura style I'm on the lookout for the "sign" of where he would like to be. After a few days we couldn't think of any place that really stood out, alot of OUR favorite rides we think would be a little too scary for Aidan to hang out, such as pirates of the caribbean and haunted mansion. Mike always teases saying "maybe when he gets older he can stay here." We also joked about Aidan being the youngest person to get to ride on Expedition Everest. Sorry went off on a tangent again, haha. Continuing on... so Mike had emailed his Dad to let him know how our trip was going and saying how we were trying to find a good spot. He told us to check out Tom Sawyer Island. The next day we were going to Magic Kingdom so we figured we would look around. As we were exploring the island, walking through caves and across bridges, we came across this really super bright and sunny spot amidst lots of trees. We paused here for a second and noticed this little yellow and black butterfly flittering around in the branches. We stayed and watched it dancing around in the sky for a few minutes and then we continued to explore. While exploring, we noticed that the butterfly was following us around. After we had walked the island we began discussing if this would be a "spot." We deliberated some and decided that it would be fitting to leave a part of him where we first encountered the beautiful butterfly. As we trekked back to the area we heard some running water flowing like a waterfall and noticed that the area where we met the butterfly was unusually denser than the rest of the island. We realized that it was calming and serene just like Aidan's jungle crib soother. It was then that we knew that it was a perfect spot. When we got back there the butterfly was waiting for us. We hung out for a few minutes and chatted with Aidan and the butterfly.

Peter Pan and the Lost Boys in Neverland

Words Fail Me

2008-05-20T01:40:00.003-04:00

no parent is by any means perfect, so i'm not getting up on a soapbox claiming to be the worlds best mother however this next story just completely sickens me to no end... what is this world coming to, and how are these people better suited to be parents then Mike and I...

MONDAY, May 12, 2008, 1:01 p.m.
By Lori Weiss

Women cited for letting 2-year-old smoke
Two women were arrested at a Greenfield Ponderosa restaurant after being accused of allowing a 2-year-old to smoke.

According to police:

The boy's 26-year-old mother and 39-year-old aunt were eating at the restaurant last week when they held a cigarette up to the boy's mouth and attempted to light it.
The aunt told police that the boy often says, "smoke, smoke," and sometimes takes cigarettes out of a pack and puts them in his mouth.
The child had been saying "smoke, smoke" while the aunt was smoking in the restaurant, and she held her cigarette up to the child's face. When she took it away, he continued to ask for a cigarette and grabbed one from a pack on the table.
When the child put the cigarette in his mouth, the aunt held up her lighter to light it, but the boy did not inhale the cigarette so it failed to light. During this time, the boy's mother was paying for the food and when she returned to the table, he still had a cigarette in his mouth, and the two women began laughing.
An employee then came over to the table and told them to take the cigarette out of the boy's mouth.
The boy's mother said the child did this all the time, adding: "He can even light his own cigarettes." The mother then asked the boy for a cigarette, which he pulled out of a pack and handed to his mother.
When the mother said "light, light" the child grabbed a lighter and handed it to his mother.
The aunt said she was concerned about the boy's welfare because the child can say and do other inappropriate things, and believes he may have picked up on the drug activity his mother displays.
The aunt said the mother keeps a rolled up dollar bill in the bedroom, which the child plays with.
Any time the boy has the dollar bill he hold it up to his nose and says, "fix, fix" over and over again.
The Milwaukee County district attorney's office did not charge the women with child abuse because there was no proof that the child was harmed or injured as a result of the incident.
The women were instead issued a citation for providing tobacco to an underage person.

Happy Birthday Aidan!

2008-05-16T11:00:00.003-04:00

Well today Aidan would be 1 years old. Last night I kept replaying a year ago in my mind and then sharing it with Mike. A year ago they were getting ready to break my water, a year ago they were telling me to rest before having to go into active labor, etc etc etc. This morning I woke up and it was raining, I would say that's pretty fitting. Well a few posts ago I mentioned that we would have a surprise for everyone. I didn't realize mail takes so long to be delivered so some of you probably didn't get their present yet, however everyone can now see what we have been working on. Its a video presentation of Aidan in all of his cuteness.

This day will be a celebration
of the short time you were here.
You will always be remembered
with great love and sometimes tears.

There will always be a big void
Our souls will grieve forever.
Will we forget or stop loving you?
No, not now . . . not ever.

As this sad day is upon us
Oh! How our hearts still hurt.
But even as we mourn your death
We will celebrate your birth.

Happy Birthday Baby!

52 Weeks

2008-05-14T00:56:00.002-04:00

52 weeks ago I was in a hospital.
52 weeks ago I was a bundle of nerves.
52 weeks ago I fell in love at first sight.
52 weeks ago I cried tears of joy.
52 weeks ago I was exhausted but couldn't fall asleep.
52 weeks ago I saw the miracle of life.
52 weeks ago I became a mother.
52 weeks ago I saw all the possibilities the future would hold.

April Update

2008-04-30T23:59:00.001-04:00

Well we haven't updated in awhile, I kept meaning to but I would forget or time would get the best of me. Anyways, I did go to the Share Meeting with Mike in April. I went kicking and screaming but I still went. Yet again another 4 hours of tears. There were new members and some old members that we met for the first time. Mike had a hand out of the Just Babysitting Post but I told him if he brought it in, I wasn't going to go in, so he left the handout in the hall. Then of course other people brought things to show so he was all mad, whatever. lol. I didn't really want to share Aidan with anyone, especially since they didn't get to know how special he was. I don't mind sharing him with friends and family, but random strangers who share the same experience just don't rank with me yet.

In just a few short weeks Aidan would be turning 1. I can't believe how fast this year has flown by. I remember a year ago staying at the Ronald McDonald House making some great friends, going to lots of doctor appointments and having so much excitement and anticipation of Aidan's arrival. We are planning something great in celebration of him. So some of you should be receiving it in the mail. For all of our online supporters, we will also be having a surprise for you as well a few days after his birthday.

Just Words

2008-03-21T09:57:00.003-04:00

Congratulations On The Birth Of Your Newborn!
Mistakes happen I understand that, but why?! What have Mike and I done to deserve this? Does the universe hate us that much? They just keep pouring salt into the already raw wound. Such a painful thing to read, yet i'm sitting here half laughing to myself about it (mostly because Aidan's death has left us with this really weird sense of humor, i believe it is a coping mechanism that we have inherited)
It amazes me how just seven little words can have such an effect on you.

6 months later...

2008-03-12T09:39:00.003-04:00

Noah letting his "Hakuna Matata" balloon go

I have been putting off writing this post simply because its easier not to, but as I was getting ready for work this morning I realized that it's pretty therapeutic putting all of this out there. It's alot easier that talking face to face with people about everything.
Last night was a Share meeting, I didn't want to go. Everyone is so very nice there and they all are going through the same things Mike and I are, but I just feel like it's hard enough dealing with the pain of losing Aidan, I really don't need to add on all the pain that I feel listening to the other families horrible tragedies as well. And yes, its a support group and there are happy things that go on as well, but last night I just didn't want to deal with it. I feel badly because Mike does want to go, and I want to support him and his decisions. Next month I will make it my goal to WANT to go with Mike.
Monday was a pretty decent day, mostly because I couldn't very well be sad around Noah. He is so funny and he's growing up so fast! Plus Barb Dave and Jenn did a good job making me laugh when I would start to cry. We let some balloons go as little messages to let Aidan know we were thinking about him. I was excited to get back home because I missed Mike alot and was happy to be back with him.
Today I tried to go into work but I had been thinking about Aidan all morning. The director pretty much sent me home right as I walked in the door, which was very nice because I honestly don't think I would have made it through the day.

This has all been alot harder than I thought it would. I think everything is finally hitting me. We have been strong for so long, too long. That's what everyone says to me, "wow, you guys are so strong, I don't know how you do it! If it was me, I don't think I could handle it." and I always give the same reply, "you have to be strong, you just have to wake up in the morning and get out of bed and just keep going." but its really hard to do that, especially the last few days.
I've begun moving out of the sadness and moving onto anger. I miss Aidan like crazy but I am so angry about losing him. I'm angry when I hear about and see people who have children and don't give a damn about them. I'm angry when people say things like, "you will have more children." or "it wasn't meant to be" Yes I agree, I can definitely have more children, but they will never take the place of Aidan. And go to hell, it wasn't meant to be. It was meant to be, Aidan was meant to be in our lives, Aidan was stolen from us!

i have alot more to say on the subject but Mike will probably already say that its a bunch of rambling, which it no doubt is, lol. maybe after i clear my head again i will write more

Disneyland

2008-02-15T17:03:00.004-05:00

Sleeping Beauty's Castle

The Court of Angels (one of the spots we put some of Aidan's ashes)

Snow White's Garden (another spot we put some of Aidan)

Well Mike and I got back from Disneyland a couple weeks ago. We went with Mike's brother Pete. It was a good experience. I definitely felt Aidan's presence while we were there.
The first time I felt him there was the first night getting ready to see the fireworks show. The announcer came over the sound system and said that because of winds at a higher elevation the fireworks might not happen that night. I began talking to Aidan saying that if he was there with us to let us know by slowing the winds down so that we could see the fireworks. A few minutes later another announcement saying the show would go on. I got a bit misty eyed after that and the fireworks were beautiful.
The second time I felt Aidan's presence was while we were trying to figure out where to sprinkle some of his ashes. Mike and I had been looking all over the park for a great spot when we realized multiple spots that we like would be okay as well. Late the second day of our trip I thought of Peter Pan's Flight being a good spot because of their trip to Neverland where all of the Lost Boys who never wanted to grow up stayed. I thought that would be pretty fitting. So while standing in line the next morning for the ride, we saw a boy waiting in line with a pair of Mickey ears on his head and his name embroidered on the back. His name was Aiden, not spelled exactly the same but I took that as a sign that Aidan thought it was a good place as well.
And lastly, and kind of creepily when we were getting ready to ride the Haunted Mansion as I was waiting for our DoomBuggy to approach I felt a tug on the back of my pants. We were the last ones in line and I turned around and no one was there. It could have been anything but it felt like a tug that a little child would give when they run up to their parents when they were scared or being shy. Who knows it could have been a ghost, not necessarily Aidan, or it was just a figment of my imagination. Either way it was sort of calming.

So we decided to sprinkle Aidan's ashes in three different spots. The first being Peter Pan's Flight. The second was to the side of the castle, at this little hidden away spot with Snow White and the Seven Dwarfs. It was a beautiful garden area with a water fountain and wishing well. Every once in a while Snow White would start singing the song "I'm Wishing". And lastly in this little tucked away area of New Orlean's Square called the Court of Angels. I will post pictures of two of the spots later on.

Updates

2008-01-21T22:41:00.000-05:00

I'm not really sure how many people still actually come to Aidan's blog, but if you do here is a little update on what we have been up to.

December was a pretty rough month. We were so looking forward to Christmas with a new baby. While out Christmas shopping we bought some presents that we would have bought for Aidan but instead donated them to families who for one reason or another might not have been able to have a Christmas morning. We also bought Aidan a little Christmas tree that is still up lol. We decorated it with glittering snowflakes and angel ornaments. We spent the holidays with our families even though all we really wanted to do was curl up in a ball and forget they were even happening. Our motto for the coming new year was, "well it could only get better"

With January swiftly approaching we were looking forward to, yet dreading our flight out to Minnesota. We figured this month would be a great time to finally start going to the Share Meetings. Share is a support group for families that have lost children. One good moment was when a person at the meeting said that yes we could stay in our beds and cry all day but is that what our child would want us to be doing? I thought that was a great way to look at things: What would Aidan want us to be doing? He was such a happy baby (as long as he was getting all the attention lol) would he really want us to be so sad?
Being back in Minnesota was bittersweet. It was so familiar, it was like a second home because we have such great memories from the week that we had Aidan at the Ronald McDonald House and it felt like we really hadn't been gone that long, even though it had been four months. Wow four months, I can't believe it has been that long. But at the same time we knew we left with horrible last memories. I swore I never wanted to come back to the state. Entering the hospital, knowing that it would be the first time going there when we wouldn't be visiting Aidan was tough. After meeting with the hospital we got no more answers than we came with. We will forever never fully understand why Aidan has gone onto Heaven or what happened. After the meeting we were allowed to go back to the PICU and see if there were any nurses there that we wanted to say hello to. Walking past the room that Aidan had spent over a month in, I blew him a kiss and put it where the picture of him used to be outside the door. The child that was in his cubicle of the room was a child that had been there while Aidan was and he was going to be getting ready to go home soon. None of our "favorite nurses" were on shift during the time, but there were so many familiar faces. We didn't get to do a whole lot of walking around the campus because of the weather, although if you asked anyone who lived in Minnesota they would say that we were there during a heat wave; one of the news casters was actually outside with no jacket on! lol.

Something to look forward to is: in the middle of February we will be going to Disneyland for a few days. We are going to be taking some of Aidan's ashes with us so that he can be there with us. Currently i'm trying to do some research to find the perfect spot for us to sprinkle some ashes while we are there. Anyone who has been there and can offer a suggestion it would be greatly appreciated although i'm sure Mike and I will find the perfect spot while we are there and just know that its THE SPOT. hehe. That's all for now

Just Babysitting

2008-01-21T22:28:00.000-05:00

I got this idea from a website and I thought it was such a cute yet sad idea so Mike and I wrote our own letter.

Dear God,
This is just a little letter to go over some rules of the agreement while you babysit our little boy. Here are a few points to remember.
1. Please make sure Aidan gets Eskimo kisses everyday. Don't be surprised if he tries to eat your nose, that is a game that he and his Daddy like to play.
2. Tell Aidan that Mommy loves him right up to the moon and back. I read him bedtime stories and Guess How Much I Love You is his favorite.
3. If Aidan becomes inconsolable, two things that calm him down without fail are his Fisher Price Jungle Crib Soother- he loves watching the monkey swing back and forth and his big green pacifier- you might have to add a bit of Sweet-Ease.
4. Please take Aidan for stroller rides to the park. While there push him on the swings and let him play in the sandbox for just one minute longer because all kids just want one more minute.
5. Every little boy needs a dog, so make sure he gets to play with Dakota. Aidan has lots of energy but Dakota could definitely keep up with him.
6. Make sure Aidan isn't a picky-eater. Without an esophagus he never got to taste food before so it might take awhile for him to get used to it.
7. Get Aidan a really great computer and teach him all there is to know about them just like Daddy wanted to.
8. You will need to stock up on batteries because we want lots of pictures to look at when we pick him up one day. We don't want to miss a single thing.
9. Please let Aidan look upon the world and check in on us and everyone else that loves him to make sure that we are okay. And lastly,
10. Like I said we have an agreement and you are ONLY to BABYSIT him until we get there. After we do, don't worry Mommy and Daddy can handle the job.
Thank you God for taking care of our little angel until we can see him again.

Christmas Card

2007-12-05T21:20:00.000-05:00

We hope everyone likes the photo of Aidan we are including with our Christmas card this year.

"I love you all dearly
Now don't shed a tear,
I'm spending Christmas
With Jesus this year."

Merry Christmas from Heaven
-Love Aidan Kiczek

PS we may not have your address so please send me it by email to kiczek@kiczek.com. And we will be sure to send you a card.

Missing Aidan

2007-11-03T23:57:00.000-04:00

It's been hard for me to post on the blog. I bother Laura to post and then I edit her posts, much to her chagrin. Everyday I think about Aidan he is and will be forever missed. Halloween was especially rough as it would have been around the time Aidan would have been able to come home. Thinking of him in a cute Halloween costume with Laura so proud of how cute she made him look really made it a hard day for me.

The Necklace

2007-10-24T15:13:00.000-04:00

Mike has been asking me to post this story for about three weeks. Sorry it has taken so long.
I was at a working interview at a child care center and a little girl I had never met before came over to me. I was sitting down on a piece of concrete and she saw my necklace. The necklace is a heart with a mother and child. She said to me, "I really like your necklace." I immediately replied, "Thank you very much." She then said to me, "It's a mommy and a baby, and it looks like an angel." I smiled when she said that and told her, "Yes it does."

The necklace that was given to me when Aidan was born.

Fly

2007-10-10T17:55:00.000-04:00

I can't even comprehend how much our life has changed since last month. It has been exactly one month since our lives fell apart. In on respect it seems like just yesterday but in another respect it feels a lifetime ago. Everyday my mind goes back to the exact moment that I saw Aidan not moving. I replay every moment of those few minutes in my head atleast once a day. I can still feel my hand on his chest not feeling it rise. But in those same moments it feels a lifetime ago since i've been able to hold my baby. What I wouldn't give just to be able to hold him one last time and for him to stare into my eyes and give me a half real, half gas smile.

I had my first dream of Aidan while I took an afternoon nap today. I don't remember alot about the dream, however I remember holding him, he was swaddled in ALOT of striped hospital blankets, and all I could see was his face. He felt weightless in my arms. I was talking to a little girl who couldn't have been more than five years old and all of a sudden he was in my arms. I woke up half expecting him to still be there, but of course he wasn't.

Mike and I can't thank everyone enough for all of the cards and prayers. It is a great comfort to know how many people care about our family. There aren't enough words to describe how forever grateful we will be.

Online Videos by Veoh.com

Celine Dion - Fly

Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again

Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace forevermore
But hold this mem'ry bittersweet
Until we meet

Fly, fly do not fear
Don't waste a breath, don't shed a tear
Your heart is pure, your soul is free
Be on your way, don't wait for me
Above the universe you'll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won't forget

Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light

Angels Are Hard To Find

2007-10-03T18:40:00.000-04:00

I found this poem online and fell in love with it, I don't know the author's name to give them proper credit.

When God calls our children
to dwell with Him above,
We mortals sometimes question
the wisdon of His love.
For no heartache compares with,
the death of one small child.
Who does so much to make our world,
seem so wonderful and mild.
Perhaps God tires of calling
the aged to His fold.
So He picks a rosebud
before it can grow old.
God knows how much we need them,
and so He takes but few.
To make the land of heaven
more beautiful to view.
Believing this is difficult
still somehow we must try.
The saddest word mankind knows
will always be Good-bye.
So when a little child departs,
we who are left behind,
Must realize God loves children.

Angels Are Hard To Find!!

Life

2007-09-26T14:42:00.000-04:00

A quote that is helping to ease the pain little by little.

"Every day may not be good, but there is something good in every day"

This is my daily favorite picture of Aidan
I love this picture because it was while we were on our "summer vacation" from the hospital, before all of the surgeries and scary drugs. He was my perfect little angel who was so full of wonder. He would look all over the room not focusing on anything in particular because he was just trying to absorb so much of life. Normal life, not life in the hospital. He was supposed to get back to that, but he never got the chance!

I never really noticed before how many babies you encounter in your day to day life. Everywhere I go, it seems like there are atleast 10 babies as well. Some crying, some sleeping, some, like Aidan, trying to absorb as much of their surroundings as possible. I'm jealous of these people, I want what they have!

Aidan Kiczek Obituary

2007-09-20T15:21:00.001-04:00

Aidan Kiczek's Obituary

Aidan the Hero

2007-09-14T00:28:00.000-04:00

The love and support we have received from everyone is truly a blessing and what helps us get through the days. We honestly can't thank anyone enough for all of the prayers we have received.
Yesterday they had to repeat the apnea test because the first one was inconclusive due to a technicality. We have spent as much time with Aidan as we could, we've held him, read him stories and cried for him. We prayed that God would grant us one last miracle, and he has. Aidan was declared brain dead at 6:33pm today, however his heart will go on beating. They have found a child in Illinois that is Aidan's size and desperately needs a new heart. They also have been testing his blood to see if he might be able to either save two children who need kidneys or one adult who needs one. Unfortunately due to the amount of TPN his body has been receiving his liver isn't a viable option, but they will use it in research.

We Miss Aidan

2007-09-11T22:30:00.000-04:00

This is the worst day of my life. After Aidan coded he was only "down" for a short while but unfortunately Aidan suffered a traumatic brain injury from which he will not recover. Last night the doctors gave Aidan a CAT scan and it showed heavy brain trauma and swelling. We went home to the Ronald McDonald House and tried to sleep and calling the hospital throughout the night worrying about Aidan.
Today Aidan had a Electroencephalography EEG and the results were very bad. Afterwards the Attending from Neurology department did an evaluation of his reflexes then took us to the Family Consult room and told us the news Aidan is Brain Dead and has no lower or higher brain function. So essentially he passed away 9/10/07 but it will take until tomorrow to actually declare him legally dead. We have chosen to donate Aidan's Organs after he is officially declared brain dead so they are doing there best to keep him around so he can "gift life" to other sick babies in need of a transplant.
We know everyone that reads this blog loves Aidan as much as we do will be secure in the fact that we will carry on. The next year will be hard for me and Laura and we will continue to post our thoughts and prayers for Aidan on this blog. We will need your support and prayers over the next few days. Although we feel there is no chance Aidan will come back from this we are still praying for a miracle and even if God doesn't grant us a miracle we know Aidan will be in his bosom. We had the priest come and gave Aidan last rights. We will keep you informed if there are any changes but please pray for us in our time of need.

One Step Foward, Four Steps Back

2007-09-10T19:05:00.000-04:00

Code Blue
Aidan got moved over to 5A. Me, Laura, Barb and Cindy we all with Aidan relaxing and our nurses were in the process of setting up his monitors when Laura noticed Aidan was not breathing or moving. The Nurse immediately pushed the Code Button and our world collapsed. I screamed, "Help" and got run over by about 30 nurses and doctors.
We were immediately shuffled out into the worst room you could ever imagine. The Butterfly Room were they have a quilt on the wall with lots of butterflies and one square that said butterflies are free. I wanted to break the room, I wanted to scream and mostly I cried. Not knowing what was going on with Aidan was the worst thing ever. While waiting I had said to Laura, "Good Thing I went to church this sunday." Child family-life told us he had to muscle through at least 10 people to get any answers and came back after 2 minutes saying that he is being Intubated to put him back on the Ventilator. We had asked if Aidan's heart was beating and he said he would come back with more news. Those minutes were the longest of my life. Jason in child family-life came back with news that Aidan's heart is beating and they are still working on him. After a few minutes they allowed me and Laura to see Aidan in the Intensive Care Unit and he looks like he is fighting it and he has just about everyone looking after him now. We are worried that this may have caused nerological issues and they will probably give him tons of tests over the next few days. He has not moved since he coded and they are working on improving his blood gases. It may take a while for him to move after this so we will keep you posted.

Post Op 11

2007-09-09T23:50:00.000-04:00

Visit from my Grandmother and Godmother
Aidan was almost moved out of intensive care but Dr. Foker decided instead to put it off for one day to avoid him moving on the weekend. After visiting with Aidan we waited for Cindy "Grammy" and Barb "Godmother" to arrive from their long drive from New Jersey all the way to Minnesota. I know how hard it is to drive here as me and Dziadzi "Grandfather" had to do it about two months ago.
After they arrived we chatted a bit at the Ronald McDonald House. Barb and Cindy both fell in love with Laura's Scrapbook she's spent so much time on. We then dropped them off at the Radisson so they could freshen up and feel better after being in the car for two days. We grabbed a quick bite to eat at Sally's a local bar and grill near the hospital, then went to visit Aidan.
It was very emotional for all of us to talk about Aidan, look at the scrapbook and visiting Aidan. Grandma and "Aunt Barb" both agree that Aidan looks great and is so cute, it's just a little overwhelming to see all the tubes hooked up to him in person.

Grandma and Aidan!

Post Op 10

2007-09-08T14:50:00.000-04:00

Aidan is getting stronger!
Aidan is very cute today. I got to hold him for the first time in 40 days and 40 nights. I teased Laura about being able to fast from holding him longer then she could! He is gradually getting stronger but still has a very soft cry and continues to grunt to regulate his breathing. Respiratory will start giving him bronchial drainage (BD) treatments again. He used to get them while he was on his ventilator and we used to tease the respiratory therapists that they enjoyed beating our son. BD treatments involve the respiratory therapists lightly pounding on his back to help him work out any secretions in his lungs but really does sound like they are beating him. Aidan will continue to gain strength in his lungs and will probably be more normal over the next few days.
Aidan will start getting speech therapy soon to help him learn how to swallow. The speech therapists will start by working with his pacifier. He has already taken his pacifier for us but can not hold it in for very long.

Aidan and Daddy!

Extubation

2007-09-08T00:30:00.000-04:00

My baby Aidan is back!! Well, not completely, he still looks spacey sometimes, okay most of the time, but he is doing so well! Today Aidan came completely off his Morphine and Versed. He can get "bumps" of them still, but he usually just gets his Methadone and Ativan doses. Aidan also got extubated today!! He has such a tiny weak little cry right now, it is almost painful to listen to, but that is because he has a major sore throat from the ventilator, so they are giving him some medicine for that. He has been swallowing most of his secretions and only needs suctioning here and there. He has been grunting some since being off the vent. The nurses explained that he does that because its his way of maintaining his "PEEP", which is Positive End-Expiratory Pressure. PEEP keeps the lungs expanded to help get oxygen from the lungs into the bloodstream. The ventilator used to do this for him, so his body is making it's own adjustments to keep him comfortable.
It's so nice to be able to see Aidan's whole face! In a few days he will probably get the nasal cannula out, so we will get his first tube free pictures ever! Michael was unable to hold him today and is still upset that I got to hold him yesterday, so I like to tease him every chance I get about it, LOL.

Aidan Extubated!!

Post Op 8

2007-09-06T15:16:00.000-04:00

I'm Jealous
Aidan is doing so well! The residents have worked out a schedule and he will be off his Versed and Morphine by tomorrow hopefully. They will keep him on Ativan and Methadone to help him through withdrawal. They are also actively weening him off the ventilator the rate has dropped from 30 to 18 over the last 24 hours and he has been responding well.
In other news I am jealous of Laura! After seeing Aidan doing so well and wide awake I convinced her to hold Aidan. After 36 days of not holding Aidan Laura was almost in tears while holding him. He is still on the ventilator so instead of moving him too much I decided I will hold Aidan tomorrow but I can still be jealous of Laura. As you can see in the picture he still looks very highly sedated and he does not have complete control over his eye movements.

Laura holding Aidan!

Post Op 7

2007-09-05T14:00:00.000-04:00

The Rollercoaster that is Aidan.
Aidan is slowly beginning to get some more muscle function back. He is wiggling his fingers and toes, opening his eyes and moving his lips/chin around. Just a few minutes ago he started moving his left arm a bit. He has been off the Vec for 26 hours now and seems to be doing really well. They hadn't really messed with his Versed and Morphine, but today Kirsti lowered both of them down to .19mg/hour. They are moving very agressively with him but they definitely think he can handle it. He breathes over the vent (a good thing now) mostly only when he is awake. Everyone seems to be in agreement that he can definitely do the work himself, he is just relying on the vent right now, which in my opinion he is allowed to be a little lazy right now just because he has so much other stuff going on. He really doesn't like the vent tube though. Earlier this morning I saw him cry on the ventilator for the first time, it was heartbreaking to watch him turn red and cry without having any noise come out.
But in uplifting news, Aidan had saliva come out his g-tube! That is such a huge relief, it means that he is swallowing and there is no leaks! So Kirsti was able to remove his chest tube as well. Aidan seems alot more comfortable without that in, his heart rate dropped a good 10 bpm. It's been quite an eventful day, if all that wasn't enough, we got moved to another room.

Post Op 6

2007-09-04T12:21:00.000-04:00

Aidan is waking up today!! They just rounded on him and they asked if he had his Vec Holiday yet and Kirsti replied, "He is getting a VERY LONG Vec Holiday today-he's coming off of it" I was so excited to hear that! They also disconnected his Foley catheter and if he is able to swallow his secretions and they go into his g-tube, they will look into taking out his chest tube. He has lost some weight, it was all water weight, and is down to 5.4kg (they wanted him at or under his dry weight of 5.5). We will post pictures of him waking up as it happens.

Post Op 5

2007-09-03T15:32:00.000-04:00

We were really hoping that Aidan would have been woken up today, but we haven't seen Kirsti or Dr. Foker yet today, so I guess we will have to wait until tomorrow. Aidan had a pretty long Vec Holiday again today, 2 hours and 15 minutes, but he decided to opened his eyes again. :) He finished up his antibiotics today from his fever on Thursday.
Now for the bad news, Aidan's central line that is in his groin no longer will draw blood, they can still get meds to go into it, but nothing will come out. They draw blood on him 2 times a day and check his potassium at least 3 times a day. Christina had to use his RA "Right Atrium" line to draw blood. They don't like to draw labs from there, but they will have to use it for now. Christina is quite bummed because the RA does not draw usually well either. Tomorrow they might get one of the Attendings to re-wire his central line.

Post Op 4

2007-09-03T00:30:00.000-04:00

Well it had to happen they moved Aidan to another room. After 1 month of being in the same PICU room they moved us down the hall in the PICU. They typically move patients around alot more and we have been lucky to be in the same room for so long. I helped get Aidan all settled into his new room and moved in another chair from the hallway.
After visiting Aidan, we went to a barbecue for Nadia Pierce. Nadia is four years old and was born with Esophageal Atresia just like Aidan. She recently just got out of the hospital and is the oldest case of Esophageal Atresia ever to be connected by Dr. Foker. Nadia's Parents are from New York City and moved to Minnesota because two years ago they began their journey to fix Nadia. We had such a good time and are glad we went. When I tell Aidan about his Esophageal Atresia and how much work we put into making him better I will also tell him about Nadia. All the hard work this cute 4 year old girl and her family had to go through just so she could eat like me and you makes her and her family our heroes. I can't even fathom having to be in an out of the hospital for 4 years. Please pray for Brian and Pascale and their daughter Nadia that they stay out of the hospital for a very long time.
Aidan will be hopefully be waking up tomorrow or Tuesday and we will have to go through the painful process of watching him detox from all the morphine, and go through withdrawal symptoms.

Post Op 3

2007-09-01T23:30:00.000-04:00

With knowing that Aidan is going to be waking up soon it's getting harder and harder to just watch him lay there sleeping. Nothing has really changed yet. They gave him a Vec Holiday today for the first time since surgery and it took 5 and a half hours! We got there and he was on holiday, we went to the Minnesota State Fair, came back and he was still on holiday! However, the payoff was so great! Watch the movie below to see how he woke up. I was so excited to see him open his eyes! I could watch this video over and over again. :)

Aidan with his eyes open!

Aidan waking up on Vecuronium Holiday!

Vote Results!

2007-08-31T15:00:00.000-04:00

Should Aidan's bear "Champ" keep his MicKey forever?
11 votes (64%) Yes, keep it forever.
6 votes (35%) No, remove it when Aidan has his removed.
17 votes total

I am so happy Champ will be keeping the MicKey. Laura had wanted Champ to have the MicKey removed but I really do think it looks cute and will help Aidan understand where his scar on his tummy came from. Just before I posted this the MicKey came out of Champ and fell on the floor. When I noticed it was missing from Champ I gave Aidan's pregnant nurse Hilary a heart attack when I said, "Oh my God where is his G-Tube." She jumped up and checked Aidan immediately! I've apologized multiple times to Hilary hopefully she'll forgive me. I gave her chocolate so hopefully that will help.

Thank you for all your support, prayers and votes.

Post Op 2

2007-08-31T12:30:00.000-04:00

Aidan is doing so much better now than he was last night. After his surgery his heart rate was around hanging in the 180's and high 170's with his blood pressures being around 110/70. They kept giving him more Morphine and Fentynal and Midazolam. When we left him around 8:30 PM he was around 160's with his blood pressure at 100/68. Around midnight he had a fever of 101.3, but after the fever broke his heart rate dropped down to the 140's and its been staying there, going down to the 130's occasionally all morning. They also moved his bp cuff from his leg(which is notoriously a higher reading for people) to his left arm and his pressures have been normal with his most recent one at 73/47. He got another fever around 8:00 AM, so they are running some antibiotics through him just to be on the safe side. They also lowered his Bumex drip(that helps him shed excess water) because he had over 200 in and diuresed over 400, so they think they are finally starting to dry him out. He looks so much better after this surgery than he did from his stage 1
I can't wait for him to start waking up! Because of his tight stretch I think they will begin taking him off the Vecuronium on either Sunday or Monday (hopefully Sunday though!)

Aidan and Champ getting their blood pressure checked

Post Op 1

2007-08-30T22:15:00.000-04:00

Aidan is resting and will hopefully wakeup within the next 3-5 days. He is so cute, Laura and I both want to thank you for your prayers and hope for a speedy recovery.

Surgery 4.4 Final

2007-08-30T17:51:00.000-04:00

Aidan has an Esophagus!
Dr. Foker likes to keep people on the edge of their seats. After finding out Aidan was being closed up Laura and I both were worried sick wanting to know how the anastomosis went. We get the news from Dr. Foker 5 minutes ago that Aidan is connected. The tissues aren't as substantial as Dr. Foker would like and he is worried about Aidan's nutrition, also the connection is very tight so Aidan will be down for a few more days while the tension on his esophagus loosens and the anastomosis heals. Laura and I both will be taking it one day at a time as Aidan recovers but he's over the largest hump.

Aidan's New T-Shirt

Surgery 4.3

2007-08-30T16:38:00.000-04:00

Well we just heard from the volunteer that Aidan is getting closed up right now. We still aren't 100% whether he is connected or not, we are expecting Dr. Foker to walk through the door any minute now.
Funny story, we asked for an update and the volunteer came back out of the nurses' station and said to Mike, "Do you work here or something?" I replied, "no, he just likes to pretend that he does ;) " and then said that they told him to send Mike back. Turns out they thought he worked in the hospital and were going to have him go back to the recovery area.

Surgery 4.2

2007-08-30T13:05:00.000-04:00

I just got another update from Monica. She said everything is still going really well and they are working away on him. I asked if she knows if they are able to do the connection and she said from what she hears of their conversations she thinks that they are able to connect, if she hears any sort of confirmation of that she will have one of the nurses back there contact the volunteer and let us know. So far so good!

Surgery 4.1

2007-08-30T12:24:00.000-04:00

Monica came out on one of her breaks a bit ago and said that Dr. Foker started around 9:30 AM, everything is going really well. They gave him some blood products to stay ahead of the game and she doesn't really like the looks of his peripheral IV line, so she might take it out and put a new line in after they close him up. She said she'd try to come out on her lunch break to give us an update as well.

Surgery 4.0

2007-08-30T09:15:00.000-04:00

Last night before we left the hospital Mike told our nurse to watch Aidan's potassium and she said, "Thank you I was just about to do that." I woke up this morning thinking that Aidan wasn't going into surgery today. I tried to put it out of my mind but it kept nagging at me. When I got to the hospital at 7:10am, his nurse from last night said, "He almost didn't go in." His potassium levels kept going down. They went from 3.2 to 2.9 to 2.3. Right before his surgery they retook the lab and his potassium level went up to 4.5 . Karen is definitely one of Aidan's angels! The anesthesiology team came up this morning and the nurse anesthetist, Monica, from Aidan's first Stage 1 surgery was on the team, so we know he is in capable hands. Aidan was admitted to the OR at 8:08 AM. We will keep you posted on any news we get as we get it.

Intensive Care 30

2007-08-30T00:30:00.000-04:00

After a whole month with Aidan in a pharmacological coma Aidan will be getting his phase 2 the anastomosis of his esophagus tomorrow. Aidan had his esophagus stretched for the last time before surgery by Kirsti and she told us hopefully Dr. Foker would be up to get consent for surgery. I was kinda overwhelmed with sitting in Aidan's PICU room and went to the family lounge after lunch and passed out in the recliner. Laura and I both wanted to talk with Dr. Foker about his options if Aidan is not connected tomorrow. We both are trying to maintain our positive attitude but after 3 procedures and 1 month with him in a coma we both want him to wake up no matter what happens tomorrow. Aidan will be going into Surgery at 8:00 AM and we will have to be there bright and early. All your prayers will help I am sure! We were hoping Aidan would be connected on August 31 Saint Aidan's feast day but it's close enough.

Intensive Care 29

2007-08-28T18:17:00.000-04:00

It has been such a long but fun day. Today at Rounds they went up on his Vecuronium (his Vec Holiday only lasted 30 minutes today) and they put him an a Bumex drip. The bumex helps shed excess water weight. They also increased his feeds to 15mLs an hour and went down 5mLs an hour on his TPN. The resident assured Kirsti that it would only lower his nutrition potentially by 4Kcals. He also is running a low-grade fever (not above 100.)
This morning I was holding Aidan's hand to try and warm it up because despite him being a bit warm his hands were freezing, and he tried to grasp my finger! It warmed my heart so much! Then he began moving here and there a bit. I told our nurse and she gave him a couple bumps. Even after the bumps he was still squirming a bit. I got worried and she checked the line to see if there was a kink or if the IV was leaking but everything was fine. I asked Kirsti if she thought that the Narcan (the drug that wakes up his bowels) was affecting his Vec and she didn't think so. She said it's probably because he has been on the Vec for awhile and his body just needs more of it.
Aidan also got a pseudo-esophagram today at the bedside. Both Dr. Deitz and Dr. Hunter were out today so they had Dr. Kahn scope both his lower and upper pouches and inject them with a dye and they then took x-ray pictures. While they were doing that, Dr. Kahn put in a G/J-tube. After they were done we asked them how it went and they found no leaks in the esophagus (awesome news) and it looks like there should be enough esophagus to work with, so hopefully surgery on thursday. Obviously we will let you know if this information changes as we get it :)

Intensive Care 28

2007-08-27T15:42:00.000-04:00

I got to the hospital pretty early today because the new round of residents started this morning so I didn't want to miss Rounds. Aidan is doing really well and he is a little over 6 kilograms (13 pounds). There was a mix-up this morning with his formula, they gave him Soy instead of Regular formula but luckily I caught it and he only got it for a few hours. I talked to Kirsti and she said that Dr. Deitz is out this week but she was trying to get Aidan on the schedule for either today or tomorrow for an esophagram (whenever he has an opening in his day) and hopefully Thursday he will have his Stage II. I also asked her about the G/J tube and she said if it isn't leaking formula then she isn't worried and not interested in putting a different tube in. The residents were thinking they might want to go down a bit on his Vec (i knew this would be a bad idea) So they said if his Vec Holiday lasted more than 2 hours to let them know and they would decrease it. Aidan started moving at around 50 minutes with the nurse seeing him move at around 55 minutes, so thankfully that means he can stay where he is.
In sad news, Aidan is losing his hair, alot of it, and in patches :(Aidan's Primary Nurse, Christina, said yesterday that she thinks he probably has a super fast metabolism, which is why they need to constantly increase his doses and that the TPN isn't enough for him. It could also explain the hair loss. It's kind of like when a person is anorexic and their hair begins falling out because they don't get enough nutrition. She said be prepared to be eaten out of house and home when he turns 15 LOL

Aidan's Hair Loss

Intensive Care 27

2007-08-27T00:00:00.000-04:00

Date Night
Today was rather uneventful for Aidan. Laura was watching him and saw him move his arm when he wasn't supposed to and succeeded in convincing the resident on duty to increase his Midazolam and Vecuronium doses so he's less likely to move.
Laura and I then went to the Guthrie Theater on the West Bank of the Mississippi River to see Private Lives. The play was really good it took our minds off our situation for a little while, although Laura wanted to go at Intermission because she missed Aidan. While the play was really good what I thought was cool was the theater house. The building itself is very pretty and we noticed it when we were on the Stone Arch Bridge with Dziadzi "Grandpa". The Building also has this overlook and a really good view of the Interstate 35W Bridge that fell down. I took a few pictures and made a nice Panorama of the view for you all.
After the play we went and visited Aidan again because we wanted to say goodnight to him. We don't sleep very well unless we say goodnight to him and read him a story.

The Guthrie Theater

Interstate 35W Bridge Panorama from the Guthrie Theater

Intensive Care 26

2007-08-25T23:43:00.000-04:00

Aidan has had a quiet day today. His feeds were increased to 10mLs an hour and his J-tube has been leaking, but he isn't leaking formula, its a clear liquid so they aren't too concerned. On Monday they may switch out his J-tube for a G/J-tube. There is also a possibility that he will be going for an esophagram on Monday as well. When his nurse was going to turn him most of his straws fell out, luckily Dr. Foker was walking by and he said that it was okay because he was going to re-tie him anyways, which means that the formula/extra proteins is really helping!

Intensive Care 25

2007-08-24T22:32:00.001-04:00

Aidan is now getting 5mLs an hour of formula in addition to his TPN. He is doing well enough that Kirsti was able to add a few more straws today. Nothing much else has happened today. I got to change his diaper once and help the nurse change his bedding. Mike went and visited a friend of ours, Nate and his mom, and gave her a MicKey tutorial, since we have so much experience with it. Other than that nothing new to report.

Aidan and his new J-Tube

Intensive Care 24

2007-08-23T22:00:00.000-04:00

TPN and Growth
Aidan has not gained any weight for 24 days, and 3 month old babies are supposed to gain weight. The PICU doctors are giving Aidan the maximum amount of Total Parenteral Nutrition "TPN" that his body can handle and his liver and kidneys can only handle so much. Dr. Kahn and Kirsti have decided it's time to add some proteins to his diet because Aidan's esophagus has come to a standstill with growth. The proteins would help Aidan's body heal and produce more tissue to allow for more growth. Unfortunately the proteins can only be digested, and when you are paralyzed everything shuts down including the digestive system. They inserted a J-tube (Jejunum tube)through his g-tube site which will bypass the stomach so that he doesn't reflux, instead it will go straight to his small intestines. They are going to be giving his small intestines a drug to fight the Vecuronium in only that area as well as a drug to speed up how fast his body digests the formula so that it doesn't stay in his system for too long. So the PICU nurses and doctors will have to play a balancing act keeping him sedated but letting him digest. We will keep you posted on how well Aidan does on the formula I'm almost positive he will enjoy it.

Intensive Care 23

2007-08-22T22:00:00.000-04:00

Well not much has changed since yesterday with Aidan. He is a little puffy so they resumed his diuretics. While we were there tonight, his nurse Christina, told me that he had been moving a bit and trying to open his eyes. She had already given him his PRN dose of Vecuronium so she got the resident to come in and they gave him a larger dose of Vec to calm him down. Then while I was sitting with him he began moving so yet another bump. The problem with having him "down" for so long is that his body starts building up immunity to the drugs so they have to keep increasing it slowly.
I was talking with some of the nurses over on 5A where Aidan was originally, telling them how his surgery went yesterday and ran into Dr. DeGraft-Johnson, one of the fellows on Dr. Foker's team. We began discussing Aidan and I was trying to get a new surgery date out of him. He said that what would be ideal would be to go in on the later end of next week so that they have lots of extra esophagus to work with. It's hard having him down for this long, but it would be best for Aidan, so I wouldn't be surprised if they wait a little longer than we all would like.
Remember to vote on our poll!

Aidan and Champ

Intensive Care 22

2007-08-21T18:30:00.000-04:00

Well another few days of Aidan growing and healing. While Aidan was in surgery Laura wanted to get him a Build-A-Bear and picked out "Champ". He's a cute bear with patches in support of children's health issues. Laura borrowed a pair of sissors from the Workshop and cut a small hole in the bear for his MicKey / G-tube. We both wanted the bear to have the feeding tube Aidan has. Unfortionatly Laura and I are aguing over if the bear should keep the MicKey after Aidan has his removed. So we both decided to put a poll up on the Blog to let you decide!

Champ Aidan's Bear

Surgery 3.3 Final

2007-08-21T15:45:00.000-04:00

Aidan got out of Surgery at 2:35PM. Dr. Foker walked out with his big huge mug of coffee and gave us the news. Aidan's Esophagus is most likely less then 1cm away from being attached. Unfortunately there is a leak in the proximal esophageal pouch and rather then connect Aidan and have to worry about having leaks Dr. Foker decided it's best that the Anastomosis wait. We hope the surgery happens on Friday but currently nothing is set in stone. Aidan will be going down to radiology with Dr. Dietz again before the end of the week (more cool xray picrtures!) and we'll know if the leak has healed or not.

Surgery 3.2

2007-08-21T14:15:00.000-04:00

One of the surgery nurses called the volunteer in the surgery waiting room and we just got an update. Surgery is going well but they are not yet sure if he will be connected or not when he comes out. They have a plan and it's going smoothly but at the moment it's wait and see. I would much rather have talked to one of the doctors but oh well.

Surgery 3.1

2007-08-21T10:00:00.000-04:00

Aidan was admitted to the OR at 8:24AM CST. We got to meet Aidan's anesthesiologist Dr. Johnson and he mentioned that Aidan does very well under anesthesia and we shouldn't run into any problems. Really?! Aidan's been anesthetized for over 22 days now! Well it made me laugh and at a time like this I need it. Aidan will start surgery soon but usually it takes about 1 hour before they begin just to get all the preparatory work completed by the nurse anesthetist and the OR nurses. We will continue to post updates throughout the day. Please continue praying for our family and Dr. Foker. Also your comments on this blog really do make this situation so much easier to deal with.

Surgery 3.0

2007-08-21T08:00:00.000-04:00

Aidan is all ready for surgery. He will be going down to the OR at 8:20AM CST or 9:20AM Eastern Standard Time. We probably will not get any news until well after his surgery starts.
Today Aidan will be getting an Anastomosis or basically his distal and proximal esophagus will be connected. He will not be able to eat right afterwards but he will eventually Wakeup! We are all praying for Aidan and that the surgery goes well. Another esophageal atresia baby went in for surgery last week and after putting the distal and proximal esophagus together there was just not esophagus yet and they had to close her up. Since Aidan has had all this extra time to grow we shouldnt run into any problems.

Intensive Care 21

2007-08-20T17:54:00.000-04:00

Surgery Tomorrow
Dr. Foker came into Aidan's room around 4:15PM and said surgery 8:00AM Tomorrow for Aidan. Not much else happened today. Thank You so much for your Prayers!

Intensive Care 20

2007-08-19T21:14:00.000-04:00

Not much new news...
Aidan will be getting surgery either later tomorrow or tuesday. We will post as soon as we know. It's not so much the UTI that is keeping him out of surgery now, there might be an emergency surgery that would bump him but Dr. Foker said that if there is an open surgery spot after that he might still be able to go in tomorrow. If not then definitely on Tuesday.

Intensive Care 19

2007-08-18T19:00:00.000-04:00

Another day of Aidan sleeping. His Foley catheter was taken out today and the nurse had smelled something extra funky. Unfortunately Aidan has a Urinary Tract Infection. We asked the resident on duty if would affect his surgery date but he is unsure. Hopefully since Dr. Foker will not be preforming any procedures in that area he won't need to be rescheduled. Needless to say they have him on Antibiotics for that and the fever he was running yesterday. UTI infections are very painful luckily Aidan is on Morphine now. The Fentynal was switched today for Morphine and it's definitely working much better. We are praying his infection goes away before Monday morning and he can go into surgery without any extra worries.

Intensive Care 18

2007-08-17T21:52:00.000-04:00

Well Mike jinxed poor Aidan...
Last night before we had left Aidan was running a slight fever of 100.3, so as we were going out the door Mike says, "Hope you don't spike a fever before surgery." Sure enough, not an hour later Aidan's temp was above 100.5! So they have been giving him antibiotics so that he can still go in for surgery on monday.
Kirsti also added some more straws today and said that Aidan is measuring about 1.5cm so he will definitely has enough esophagus to work with by monday morning. She said that she believes he is on the schedule for 8am. As for a timeline of events after his Anastomosis (Connection, Stage 2) she said 2 weeks following the surgery he will have his Nissen which is when they take a piece of the stomach and wrap it around the bottom of the esophagus to reduce reflux to a minimum. Then 10 days after the Nissen he will get his first dilation. After the first dilation they will be able to approximate how many more dilations he will need and when he will need them.
About an hour after this, Aidan's heart rate starts getting higher and higher and his blood pressure starts rising. Aidan's nurse had already given him his "bumps" of Fentynal and Versed, so she called one of the Residents to see what they should do. A minute or so later the Resident comes in and our nurse gives her the rundown. At this point I look at his stats and his heart rate is at 195 and I think that I overhear the Resident say "Well, I really don't want to miss rounds, so hold on." So now I am in Mama Bear mode!!!!! I remain calm on the outside but I am ready to rip this woman's head off on the inside!! How DARE she think that rounds are more important than Aidan!?!? After the resident says that I saw our nurse give her a look like "really?? you didn't just say that and walk away... But you are the resident so I can't really do anything" kind of look. Lucky for this resident she came back like a minute and a half later, that was her only saving grace. I plan on writing a letter about this as soon as I find out who the letter needs to go to.
Then a little while later to add to the excitement of all this, somehow Aidan's g-tube comes out, I'm pretty sure that there is a leak. I told the nurse to put 4mLs of water in and then in 12 hours have the nurse pull the water out to see if there is still 4mLs of water in the balloon. If there isn't then there is a leak and a new Mic-Key will have to be put in.

In some other funny news, last night when we had returned to visit Aidan we were chatting with his nurse and she was telling us how when they were going to put Aidan's g-tube in they didn't know what size to get, so they were searching all through his chart and couldn't find out the info so she goes to them "have you called the parents, they would know" and the other nurse was like "oh yeah! that is a good idea" sure enough, as soon as they asked, it rolled right off our tongues, 14 french 1.5cm, didn't even have to think about it. Mike has gotten so good he is actually thinking he might want to go to nursing school.

Intensive Care 17

2007-08-16T16:31:00.000-04:00

Esophagrams and Stretching
Today we were up bright and early to watch Aidan's Esophagram with Dr. Deitz at 8am we show up and they rescheduled for 9am, who needs sleep anyways. The pictures were very cool and I had asked if we could get a CD with them all. Dr. Foker came in to place more straws in Aidan's sutures and instead of surgery on friday they are scheduling him for monday. We think the gap is a little too long to get surgery tommorrow. They put in a Red Robinson which is a catheter to the top of his distal esophagus to use in surgery to push his distal esophagus up, instead of having to have a GI doctor pushing it up. Due to the fact it was in his esophagus I had mentioned to the nurse not to attach it to suction or give any medications through it. The next nurse had asked about it and I mentioned no medications or suction and she said it was hooked to suction and I nearly killed someone. We later found out it was hooked to the suction line but the vacuum line was turned off! Thank god I love turning things off. Since the surgery is on Monday and Dr. Kahn is available the Red Robinson is coming out as soon as Kirsti can get here with a new MicKey G-Tube.
P.S. Aidan is now 3 months old today! We celebrated it with an Esophagram and bought him a new outfit.

Aidan's Esophagus Stretching

Intensive Care 16

2007-08-15T14:20:00.000-04:00

Warning:: Today's news is really sounding too good to be true, so we aren't getting our hopes up too high but we are remaining highly optimistic.
We walked in to Aidan's room and Kirsti was getting ready to re-tie all of his sutures and she informed us that he is making great progress and she wants to get him in for his esophagram tomorrow with Dr. Deitz, depending on what the results are, he may be going in for Stage 2 surgery on Friday! If not it will probably be very early next week. There are many variables that have to line up in the sky to make this happen, so Aidan needs lots of extra prayers over the next 48 hours :) Aidan is also getting his chest tube removed today. Such a morale booster from a couple days ago.

Intensive Care 15

2007-08-14T15:41:00.000-04:00

We went to see Aidan and we were greeted with a note on Aidan's Crib. 1.8cm left to grow! We had asked the doctors here to look at his xrays and were guessing at how much left he had to go but it's much better getting it from Kirsti. The Doctors in charge of Aidan in the PICU put him on another diuretic because he is gaining too much water weight and looks quite puffy hopefully he won't continue to retain so much water.

Kirsti stopped by and left us a note.

The Children's Hospital is trying to merge the Riverside and Fairview Children's Hospitals into 1 building in 2010 so to show off the new hospital rooms they have "Adopt a Room". They are technology previews of the rooms the new hospital will have. The rooms are setup to get corporate sponsors to adopt. Who wouldn't want to stay in these rooms!

Needs more TVs!
The remote for the TV wall / Lighting / Music.

Intensive Care 14

2007-08-13T17:13:00.000-04:00

Today we spent all day at the hospital. I wanted to catch either Kirsti or Dr. Foker to find out about surgery dates, chest tube status, etc. He had a 2 hour long Vec Holiday, which is good. What they don't want to happen is for it to take him 5 days to begin waking up. We told Kirsti that we were playing around with his x-rays the other night trying to figure out how much of a gap he has left, she asked what we came up with and we said 1.6cm. She then said she didn't know where we were measuring from but he is just getting to 2cm, he was at 3cm when he had his second stage 1. We thought that he was under 2cm before his surgery, she explained that's what they had thought but the clips had slipped giving them that false impression, so it was a bit of a downer. Kirsti then said if he continues to have good growth, then she is hoping to get him in for an esoph-o-gram on friday afternoon and then hopefully surgery next week. We then brought up the chest tube, Kirsti said she will watch it over the next couple days because she doesn't want to pull it too soon and then have to replace it, which is fine with us because we don't want that either.
So it wasn't a great day for news, but it could always have been worse.

Intensive Care 13

2007-08-12T19:00:00.000-04:00

We visited Aidan early this morning and while there we asked one of the doctors to take a look at his xrays. Although he didnt get any additional straws placed yesterday his gap went from 1.8cm to 1.6cm not much farther to go! To go from 4.3cm to 1.6cm is over 50% grown. His lungs looked a tiny bit cloudy compared to yesterday so respiratory was using a neonatal lung massager to try and clear it up.

Intensive Care 12

2007-08-11T19:00:00.000-04:00

Today our internet crashed out on us at the Ronald McDonald House, so we are sorry about the delay in posting. We visited Aidan lots today, but there wasn't much change. They stepped him down from 30 to 26 on his ventilator and he kinda looks a little puffy, other than that there were no changes. Dr. Foker looked at him yesterday but I don't think any straws were added, he had already been pulled pretty tightly. Hopefully Monday I will see Kirsti and talk to her about a possible surgery date.

Intensive Care 11

2007-08-10T11:46:00.000-04:00

So I called Aidan's night nurse a few times last night to get some updates. As the night went on his heart rate and blood pressure were maintaining where they were at he did end up spiking a bit of a fever. The docs ordered a culture to be done to make sure there were no infections, and the cultures came back normal. So they gave him some tylenol, regular old infant tylenol, and voila! his fever went away and his stats slowly began to go back down to normal. Only Aidan would get more relief from a simple over the counter drug like tylenol, instead of the scary drugs like Fentynal and his Versed! :) I love my baby so much...we will be leaving shortly to go visit him.

Intensive Care 10

2007-08-10T00:30:00.000-04:00

After spending all day waiting for Aidan to get out of surgery and worrying about him Laura and I were wiped out. We decided since the dinner at Ronald McDonald House was Sloppy Joe's it's a good time to go out and have some Chinese food and stop at Target and get Aidan a new blanket. Afterwards we went and visited him and he hasn't recovered well from surgery. Not only is his blood pressure a bit high but his heart rate and temperature are just slightly higher then normal as well. We worry about the slightest change in Aidan as they are the only "signs" we get from him. The night nurse is going to let him relax a little bit without his new blanket and his stats are getting better slowly. We won't sleep very well and will post early tomorrow on how well he did overnight.

Surgery 2.2 Final

2007-08-09T15:40:00.000-04:00

Dr. Foker has just come out of surgery with his coffee mug and told us that Aidan's surgery went well and he is reconnected to his traction sutures and has been making good progress so far. He was unable to find the leak in Aidan's esophagus but it may be too small to fix or has healed itself. Aidan will get Surgery 3.0 at some point next week for Stage 2 (Repair).
Kirsti brought Aidan up to the room and told us that he did get some blood products because his hemoglobin was pretty low when he entered the OR. She said that everything looked really really good inside and that he is pulled very tight right now. His chest tube is back in as is his Foley catheter, hopefully only for a few days again. She mentioned the biggest holdup was trying to get a arterial line for his blood pressure but Aidan being his normal self decided to be impossible for over an hour until they finally gave up.

Aidan straight out of surgery

Surgery 2.1

2007-08-09T13:10:00.000-04:00

They started Aidan's surgery about 11am, they took him to the OR at 9:48am, so that whole time they were getting him set up for surgery/anesthesia/etc. So far we haven't heard anything.

Surgery 2.0 :-(

2007-08-09T09:00:00.000-04:00

Well Aidan was an add-on surgery for today, they were supposed to start at 8am, Dr. Foker wanted to start at 8am, but there is no 8am slot open, so Aidan isn't in surgery yet. Our morning nurse said she would call our cell phone with information as soon as she knows it, she doubts it would be before 10am, probably more around noon-ish.
In other news, Mike and I went back to visit Aidan around 11pm last night because we missed him, and he was in some sort of a funk. Basically ever since he returned from his esophagram his stats were elevated, high heart rate (around 170) and high blood pressures (above 100, i believe 121 when we got there). The night nurse got some medication ordered to hopefully decrease his blood pressure, well when I got in I saw that it was still around 100 with his heart rate at around 150, so I asked if he was like that all night and she said pretty much. His fellow EA roommate also was having high stats, so we think it has something to do with the other roommate they have. Right now Aidan is very sensitive to sound, so he is in a low-stimulation environment, so a child crying because they are in pain isn't really a low stim environment. Mike brought this to the attention of the resident on call last night and the charge nurse, needless to say, we still have our roommate. (the PICU is very fully right now)
-laura

I swear I was polite when I mentioned our roommate! You can't blame a 3yr old for crying but you can blame the staff for moving her into the room in the first place, then her staying in the room for so long. The resident on call last night had said, "Hopefully you will have a better day tomorrow." Which I replied with, "Oh he'll be fine he's going to surgery all day tomorrow." LOL
-mike

Intensive Care 9.1

2007-08-08T18:37:00.001-04:00

So we took a trip with Aidan down to Radiology to watch Dr. Deitz preform Aidan's Esophogram. Once Dr. Deitz arrived he mentioned the reason for the study wasn't because they wanted to check his progress but because the daily x-ray at 1:00am had shown the distal esophagus "clip" had slipped and moved back a few centimeters from it's previous position so they wanted to make sure the esophagus was still hooked up to the traction sutures. We watched as Aidan's stomach filled with barium and his esophagus started to fill. Then to our horror the barium started going inside of his chest. Aidan has a slight tear in his distal esophagus but the leak is nothing to worry about and Dr. Deitz helped calm us when he mentioned it will not harm him. We then waited until Dr. Foker came to tell us that Aidan will get surgery at 8:00am tomorrow. "Oh! okay you'll need this then.", I said as I pulled the authorization form for surgery out of his orders binder and filled in our part of it and handed it to Dr. Foker. When I spoke to Kirsti later in the hall and told her I had handed the form to Dr. Foker she said I was nuts and no one does that! Leave it to me to make light of the situation. Before Dr. Foker left he had said the surgery will not slow down his stretching as he will get a little "boost" while he's in surgery because he will be able to put the distal esophagus under the perfect amount of tension and catch up.

Intensive Care 9

2007-08-08T11:14:00.000-04:00

Yesterday I didn't get to update but there wasn't anything significant to report. He got some more straws added, he was able to go on a Vec Holiday for 1.5 hours, his stomach pH level finally increased from 1 to 6 (that's normal).
Good news so far this morning, Aidan is going for an esophagram later this afternoon! We are hoping that he will get his stage 2 repair on Wednesday, but so far nothing has been scheduled.

Aidan and his favorite stuffed animal , Leo the Lion

Intensive Care 7.1

2007-08-06T15:33:00.000-04:00

a small update from earlier...

Kirsti actually thinks his gap is less than 2cm, which is just outstanding in my opinion!! Currently she is re-tying the sutures and adding more straws and after she is done she will be removing his chest tube, hooray!!! He hasn't had any significant drainage for the past 48 hours so there is no need to keep it in anymore. So he is now down to having the Central Line IV in his neck, the g-tube that will stay in, his ventilator (which if he wasn't under sedation he wouldn't need) and his suture/straw site! (not to shabby for being less than one week post-op)

More good news, our old roommate from 5A, Nate, got to go home yesterday in time for the party and the roommate we had after Nate left, Ella, also just got discharged about a 1/2 hour ago. Mike and I both are praying we don't ever see them again, atleast not at the hospital LOL! We joke with them before they leave that we don't want to see them again either! :-P

Intensive Care 7

2007-08-06T14:05:00.000-04:00

Remember how I said yesterday that I didn't think Aidan would get any new straws, well was I ever wrong! Aidan has grown 1 whole centimeter in 24 hours! His entire gap was 4.3 cm, so he grew 1/4 of the gap in one night! Dr. Foker and Kirsti were looking at his x-rays and have estimated that he his gap is down to 2cm.
Aidan's left lung is also looking really really good at this point, he is back to where his lungs were before surgery. The respiratory therapist today said that they were super clear and his left lung was no longer "junky" and the same xray films show how much better his lungs look from the inside as well.
In some not so good news, Aidan's stomach pH has been really low(it's at 1), which is very acidic(normal pH levels are between 5 and 7). The docs aren't too concerned right now b/c there is no bleeding or anything, so we are just going to ride it out and hopefully it will go back up once he starts getting some food back in his system.

Aidan's Miracle Workers

Dr. Foker (left) and Kirsti, NP (right)

Intensive Care 6

2007-08-05T13:25:00.000-04:00

Aidan is doing really well. Today he was able to go on a "Vec Holiday" for 2 hours!! Yesterday he didn't get one because he was showing off again, this time he coughed! They have increased his sedation medication a bit to try and help with all the extra moving and it seems to be doing the trick. The respiratory therapist was in while we were here and she said that his lung looked better on the x-ray this morning (his left lung has been a bit "junky", so they have been massaging it every 4 hours.) His straws look a bit tight, so i'm doubtful that he will be getting any straws added today, but that's okay.
Right now as I am writing this, there is a harpist in here playing some music for the "EA room", it's so calming it has me yawning :)