One Year Young!

Well our little girl is over one year old now!!  She just recently went for her check up with Dr. Eccles, the first since her surgery!  Dr. Eccles said that Madison's scar looks great, and is healing so well.  She mentioned that when Madison is about 10 years old then we can start talking about giving her a belly button.  That is also when we will look at that surgical mesh that they used in Maddy's tummy, and if it is too hard and sticking out too much then Dr. Eccles may take it out.  However, all of that is a long way away so we do not need to think about that for about NINE more years!! 
So just incase you never knew, for Madison's birthday we asked people to either donate money to the Alberta Children's Hospital Foundation or donate toys to the Ronald McDonald House Magic Room.  So while we were at the Children's Hospital for Madison's appointment we dropped off the money and the toys.  They were so excited!!  The lady at the foundation even teared up when we told her Madison's story.  We have a picture of our little angel at the foundation...

Madison was more interested in the stuffed animals on the shelves!

We also have some pictures of her first birthday!

What a pretty girl!!

Time after time...

OMG!  

Can you believe that it has been a YEAR!!  I can't believe that Madison is going to be one year old tomorrow!  Just thinking about where we were last year at this time, how stressed and worried we were.  How we didn't know if Madison was even going to breathe on her own, need heart surgery, or even SURVIVE!  I remember how all Tyler and I wanted was for Madison to just cry when she was born and poop within 24 hours; and SHE DID!!  Madison the Miracle has overcome more in just one year then most of us have in our whole lives!  She didn't need oxygen, her heart healed three good sized holes, she grew new skin, she had a double hernia repair, she had her full closure 5 months earlier then expected, she crawled even though they told us she never would, and most importantly she not only survived, but she thrived!  No, she never gained weight quite like she was supposed to, and no she never hit her milestone all on time, but WHO CARES about that!  I would like to suggest that we all re-read the blog from the very beginning, and just reflect on how things could have gone, and how Madison's first birthday is spectacular because she is growing up, but also because it is a representation of how people, big and small can do ANYTHING.  Madison is the strongest, most amazing person I have ever met!  I am so lucky to get to be her mother, we made the right choice a little over a year ago to continue with our high risk pregnancy, and not one single day has gone by when I don't thank the good Lord for giving us the little miracle. 

That's what she is...a miracle!  

Well hello there...

Hiya!  How are you all?  Here is a little update on our little one.  Well she has healed up wonderfully, it is like the omphalocele was just a bad dream.  In fact, sometimes when we look at old pictures or video of Madison we are so shocked, and saddened for Madison.  Before it was just something that we didn't really notice, but looking  back it makes Madison look so....different?  I don't know how to explain it.  Anyways, in the last little while Madison has gone camping, taken swimming lessons, flown to Ontario, taken a ride on the steam boat at Heritage Park, and grown two and a half teeth!  She has been busy!  She still does not crawl, but she has been making slow progress, she has recently learned to keep her bum and her head up, before it was one or the other.  Madison has also started to walk while holding onto our fingers...watch out Ollie!  She is super cute, and somehow she seems to get cuter everyday!  That is about all that is new.  I will be sure to let you know when she either walks, or crawls...place your bets as to what will come first!  Now, Tyler and I will start to plan her first birthday!  WOW how time flies!

Here are some pictures:

Camping at Glenifer!

Swimming in Glenifer Lake!

Madison looks a little cross-eyed, but she was having fun!

Madison LOVES the water!

Playing in the yard with Madison's new pool!

She won't wear her sunglasses, but she will eat them!

California girl in Ontario!

Getting a bath from my Nana and GRANDPA TIM

All the kings horses, and all the kings men, put Madison back together again!

Just thought that I would let you all know that Madison is doing super awesome!  Her stitches are almost all the way dissolved, and her scar looks good.  She rolled over all by herself the other day!  She is an amazing baby, in case you forgot, we are so lucky to have had the care and support that we had!  Thanks to all of you for making this journey less painful, we will never forget where we came from, and we will NEVER take Madison for granted!  We love her so much, and we couldn't imagine our lives without here.  And to tell you the truth, it has been kind of weird without the omphalocele, you really notice how skinny she actually is.  Thanks for everything!

Pictures of Madison's tummy!

Hello again!  I just wanted to let you know that we are at home, and Madison is doing really well. She hasn't need too much in terms of pain management, but she seems to need a whole bunch in the snuggle department, which we are totally okay with!!  She is having a harder time getting to bed for the night, but I am hoping soon we will get our routine back.  I just wanted to post some pictures, so here there are...

You can see she is a little bruised, but what a cute belly button!

Hello, I just wanted to let you all know that Madison was discharged today at 2:00, however, we are still at the hospital because Tyler has the car, so we won't be leaving the hospital until 6:00. Pretty cool that Madison is being discharged a day early, and she is only on Tylenol for pain!! She is a little grouchy today, but apparently she was up most of the night last night. It will be interesting to see how she does tonight. Hopefully as soon as we get home the routine will be up and running. I will post some pictures once I can get to my computer. Thanks for all the love and support!!

Hello peoples. I just wanted to let you all know that Madison is doing well, she is at 20mcgs of morphine and is going to be dropped to 10mcgs at 10:30 this morning. She is still on oxygen because when she goes into a deep sleep her oxygen goes down into the 80%, but as the morphine goes down, then the oxygen shouldn't be needed. They also let her have some milky last night and she did really well, and even had a poop! So her feeds have increased, and will continue to increase as long as she tolerates it. So by the sounds of it Madison should be discharged on......(drum roll)... Saturday!!! Can you believe it! She is amazing!! I will keep you in the loop on that, but so far so good!!

Itchy, itchy, scratchy, scratchy...

Hello again, I just wanted to let you know that Madison was transferred to unit two today, and she was actually transferred to the exact room that she was in last time that we were there, but shortly after the transfer they had to move her to a different room with a different kind of monitor. Now she is in a joint room with another baby, but it isn't so bad especially because we are staying at the Ronald McDonald House, so I don't have to be awake all night because of TWO crying babies! But actually Madison isn't really crying at all, now that they took out her catheter, she is just super itchy from the morphine. Last night her pain was really bad and they had Madison up to 50mcgs of morphine per kg with bolus doses of 800mcgs!!! That is a huge amount of morphine for such a little baby, but this morning before the transfer they cut her morphine down to 40mcgs per kg, and she hasn't had a bolus since 10am and it was only 100mcgs(and I thought it was unnecessary since Madison was just itchy not in pain), so basically her pain management is under control and her oxygen has been weened from 1 liter per hour to .5, and she might be completely off of it by morning. Once she starts farting she can have clear liquids by mouth, and once she poops the she can have some milky!! Good thing too because her lips are getting do dry. Oh and I finally got to hold her, but it was tricky because of all the lines, and she wasn't happy so it was only for a little while. One more thing, Madison's liver function tests came back perfect so there has been no damage to it during the organ shuffle. Anyways, Madison is doing great, thanks for all the love and support!

Miracle on 24th St.

Hello all! I just wanted to give you all an update on Madison. Currently she is in the picu with her pain being managed with morphine, she has an iv and she is getting a small amount of oxygen through nasal prongs(NO BREATHING TUBE),she is also catheterized. Oh and I forgot to mention what she doesn't have...an omphalocele!!!!!! That's right folks it is all gone!! I know it's hard to believe, it still hasn't sunk in for us either. We are so happy! Dr. Eccles said that when she first took off the top she didn't think that she would be able to put it all in, but then once she got in there further everything just slipped in. Infact, what is pretty interesting is that all of the intestines had already made their way in, and the Only thing left to go in was the liver! Dr. Eccles gave Madison a belly button, but she thinks that it is too high, and Madison's scar is a little crooked because her defect was just made that way, so Dr. Eccles thinks that it might need to be fixed later on, but just for cosmetic purposes. After the surgery before we got to see Madison, Dr. Eccles came into the waiting room and she was so excited to tell us that she managed to get Madison all closed up, so excited that she brought us to the back to show us all of the pictures that she took along the way. She is going to use those pictures to help when she does prenatal consults, so she can help people who were like us... Scared and confused. Anyways, I cannot express to you all how excited I am to finally pick up my daughter and give her a hug, to hold her close and snuggle with her, to have her fall asleep on my chest, to carry her on my hip, to not have people stare at her, for her to wear clothes and have them look the way they are supposed to look, I am excited for her to be able to go in the pool, to have tummy time, and crawl!!! I am just so excited for Madison to be seen as the beautiful, smart, amazing baby that she is, instead of the baby with the omphalocele. I look forward to when I can take her the the family doctor and not have her cold be a possible symptom of her omphalocele!
Basically I just want to you to know that Madison is a miracle, and we are so thankful for her!!! We are hoping for a speedy recovery, please keep the prayers coming! We love you all!

Just So Ya know...

Just so ya know Madison's surgery was moved to Monday May 9th, it is at 10am.  Sorry for any of you who did not know about the change.  Also just so ya know, Madison's heart looked AMA-ZING!  All of her VSDs are gone, she has a (and I quote) "tiny" PFO, which is just a lap that never all the way closed when she was born, but 33% of the population has PFO and doesn't even know about it.  All that they had when we went in was the quantitative report which had measurements and such, so there was no verbal report yet which will say whether Madison will ever need anything more with this.  But certainly no surgeries on her heart!!  Now with her omphalocele, it is sooooo small that honestly I would only be 75% surprised if they ended up putting it all inside. I cannot believe the AMA-ZING progress that has taken place...just for a visual, imagine this:  OT made a collar for Madison not that long ago, and it had an extra flap of velcro on it just so it could fit around Madison's omphalocele, and now the velcro doesn't touch at all because the omphalocele is too small...does that make sense?  Also, just so ya know we got a room at Ronald McDonald House, so that is pretty awesome, we are SO thankful to the Ronald McDonald House, so you all better go out and buy some Happy Meals, or buy McDonald's on May 11 because they will be donating alot of the money to the Ronald McDonald House!!  Anyways please keep the positive thinking, and prayer coming our way because obviously they are working!!  I will try to update this Monday night, or Tuesday at the latest.

Super exciting, yet scary...

Happy Easter!!

Hello, I am writing this post so that those of you who have been whining about how I haven't posted anything in a while will stop whining! :) just kidding! I am actually posting this to let you know that Madison went to see Dr. Eccles on Thursday and she was super excited at how Madison's omphalocele was looking, so exciting in fact that she thinks that we will be able to get rid of all of the sac and close the skin!! This doesn't mean that Madison's tummy will be flat by anymeans, but it does mean that her omphalocele is smaller, and it also means that Dr. Eccles is convinced that she can have Madison finished and flat tummied by the time Madison is one year old, without having to use mesh too!! Apparently, the collar that OT made for Madison is doing exactly what Dr. Eccles had hoped, it is remodling the liver so that it is fitting back into Madison's abdominal cavity!! Super exciting! The downside to this surgery being a little more in depth is that Madison will have to be ventilated after the surgery to control the pain, and also to make sure that when Madison strains she doesn't rip out the stitches. So Miss Madison will be in the ICU at Childrens for a while, but Dr. Eccles still thinks that it will only take 5-7 days until she will be discharged. Also, Madison has her echocardiograph on Wednesday, and she also has a anthentist consult on Friday, but I will let you know how that goes. Until then...

Wide[n] open spaces...

Hello all,
Well Miss Madison went in to see Dr. Eccles yesterday, but before our appointment we stopped in to see Bentley, the other baby with the omphalocele who just had a full closure, and he is doing really well. (Thank you to all of you for your prayers.)
So, at Madison's appointment Dr. Eccles said that she was happy with the way everything was going, but that it is very obvious that nothing is really making its was inside.So she is going to do a surgery to open Madison's muscles so that Madison will have a larger opening at the base.  Dr. Eccles said that there is little chance that the liver would fit through the opening, so even if we get some progress with the downward pressure, this surgery is inevitable, and the liver will need some remodeling (what that entails, I am not really sure).  So occupational therapy made a collar for the omphalocele so that the base will be supported while we continue to put the downward pressure, because Dr. Eccles cannot do the surgery until May, in the meantime we will try to get some of it back where it belongs.  With this surgery Dr. Eccles will move out the muscles, and also remove some of the sac, she believes that the sac is healthy enough that it can be stitches back together, so no skin coverage at this surgery, which means that Madison will have to have at least one more surgery before all is said and done. Dr. Eccles said that Madison will be in the hospital for at least 5 days, just to make sure that the sac actually can hold the stitches and won't just breakdown, also infection will be a risk.  Before this surgery Madison will have another echo-cardiograph just to see where that VSD(the tiny hole in her heart) is at, if it is even there at all anymore.    At the next surgery Dr. Eccles  plans to close the skin and whatever muscle is possible, if not all the muscle can be closed then Dr. Eccles will put in some mesh to hold the muscle in the right shape and size, otherwise, the muscle will spread as Madison gets bigger.  Then, at the next surgery, if necessary Dr. Eccles will remove the mesh, and close all the muscle together.
So, Madison's surgery date is May 4th!  I am excited and terrified!  We will see Dr. Eccles in April one more time before the surgery, but I doubt that there will be any changes from now until then.  Wish us luck!

Splish Splash a Baby Bath!!

Madison and I went to her appointment with Dr. Eccles last week, nothing really new to say.  In regards to Madison's swab that was done, they found out that she has staph, which I guess is not a big deal.  It basically just means that she is cultured, because staph is a bacteria that everyone has on their skin.  Also while we were there the nurse said that if the gauze started to stick we could just use the sterile saline that we had, but then Dr. Eccles said that we could just use tap water, because it is that same as a bath.....  and I said "a bath?!....a bath?!"  Apparently, Dr. Eccles thought that I had been bathing Madison,which I was giving her a bucket bath (I said that for you mom!) but not a real bath!  So a day or two before Madison turned 5 months old she finally got to have her first bath!  The first one that she had I was in the bath with her, to help her stay calm.  She didn't even cry, but for some reason Ollie wouldn't stop...weird dog.  The next day Tyler and I went out and bought a baby bath, something that we thought we might never get to buy.  It is the silly things that we get excited for, and that most people take for granted.   No news on the surgery date, we will see Dr. Eccles on the 22nd, maybe something then.  Please say a little prayer for Bentley who goes in for his omphalocele surgery on the 17th of March.  

Which teddy is your favorite?

Is no news, actually good news?

Hello
I just wanted to give you the new news...which is that there is no news.  
We went to see Dr. Eccles on Thursday, the appointment was at 11:45, but we didn't get in to see her until after 1:30!  Poor Madison was so so so tired, she kept trying to sleep while we were in the waiting room, but there we noisy kids in there, so no luck.  Anyways, once we got in to see Dr. Eccles, she quickly noticed that Madison's omphalocele was pussing (gross I know), so she had to take a swab of the puss.  She said that she really doubts that it is actually infected, but I will know in a couple of days if it is.  Dr. Eccles did the dressing change, and did her normal picking and such.  Dr. Eccles said that the sac part of the omphalocele had to be in better shape before any surgeries.  Which by the sounds of things it will be surgerIES, many surgeries, not just two like we had previously thought.  I guess Dr. Eccles is planning to slowly take the sac away, in stages, not in one surgery like we had thought.  So, no surgery date as of yet, but I see her again in two weeks, so maybe then.  I wish that we knew when things were going to happen, we would like the process to begin fairly soon, otherwise she might be five and still have her omphalocele! Oh well, you can't do it until everything is ready.  But I will let you know, when I know.

Madison is having her modified tummy time, so cute!

Pictures Anyone?

Darn you ATCO gas lady, darn you!!!

Hi everyone, did you think I forgot about you?  Madison went to see Dr. Eccles yesterday, and actually she saw, Darlene from Occupational therapy, Rosemary the dietitian, and Ruth one of the wound care nurses.  We got to the Children's Hospital at 10:00am and we didn't leave until 2:00ish.  It was a super long day, but Madison is such a trooper that she didn't complain until the last little bit. 
First off we saw Darlene, and she measured Madison to make another neoprene cover, this one is purple, she is making it because one of Madison's lycra covers ripped, and those lycra covers just weren't cutting it anymore. 
Next we went to see Dr. Eccles, but while waiting Rosemary came to get us, and she weighed Madison, who by the way weighs 10lbs 4oz!!  Which means that Madison has been gaining 20grams a day, which what the goal is, (or so we thought), Rosemary told me that anytime Madison eats formula I have to "pump it up" with extra calories, by adding less water.  They are never satisfied (just like Sherry said)!!!
After that, we were finally able to see Dr. Eccles, who is really happy with the health of the omphalocele, but is concerned about the base of it.  Basically, where Madison's tummy opens to have the omphalocele is too narrow for the contents of the sac to go through, so we are getting like a mushroom happening.  So we will have to, next time we see her, start padding the sides of her cover, as well as putting padding on the top.  Dr. Eccles was really happy with the skin growth, but there is one part at the back that is not the same height as the other, so Dr. Eccles called in wound care, so that they can put on a special dressing.  So our whole entire dressing change has changed.  No more Flamazine!  Also because of this new dressing, Tyler and I will only have to change the dressing every 2-3 days.  
Dr. Eccles also mentioned that she thinks that Madison will be ready for her first surgery in a couple of months!  That is good, and also very scary!  Dr. Eccles thinks Madison will be in the hospital for 7-10 days at least. The time line depends on how long she will be on a ventilator afterwards, and how much Madison bleeds during the surgery.  Sometimes the organs can get stuck to the sac, so when they try to remove the sac the organs can bleed, especially the liver.  SUPER SCARY!
Anyways, I have to go now, the ATCO gas lady came about a half an hour ago, and woke up Madison because she rang the doorbell TWICE (who does that?!), and Madison had just fallen asleep, so now she is awake and super cranky, I have already fed her a huge bottle and she is still crying!!  This is the longest amount of time is has ever taken me to finish the blog!  I was going to put up pictures, but I will do that later.

Hush Little Baby

Hi ya!  Well Madison finally got her two month old shots today, at one week past three months!  The community health office is so short on nurses that this was the soonest I could get her in.  She got five inoculations, with three needles, but she only cried for a short time.  Thanks to Patt for being there so I didn't cry.  She is going to make such a great grandmother!  Once we got home Madison cried, and cried, and cried...so I gave her some Tylenol, and then she slept. Apparently you are not supposed to give them Tylenol before the shots because it reduces their effectiveness.  Anyways, she is fine and sleeping again, I sure hope that she sleeps well tonight.

Thanks for the super cute sleeper (Great) Aunt Elaine

So Flashy!

Happy new year to all!  Hope that you all had a wonderful holiday.  Today Madison went back to see Dr. Eccles, first appointment of the new year.  Dr. Eccles was very pleased with Madison's omphalocele, so pleased that Madison doesn't have to go back until 3 weeks!  Occupational therapy came and measured Madison for her actual neoprene cover, Tyler and I have been making our own cover for Madison because the old covers do not have enough support on their own. Her new cover is red, so flashy!  Comparing the old measurements to the new ones, Madison's omphalocele is .5" shorter then it used to be, which is pretty good considering that we have only been putting actual pressure on for about 2 weeks total.  Slow and steady wins the race...I hope the race will be over soon.  Anyways, nothing really to add.  Take care all!