Merry Christmas to all and to all a good night...

Merry Christmas everyone!  Hope that you are having a wonderful holiday.  Madison enjoyed her first official Christmas today, we opened presents with my sister, her fiancé, and my parents yesterday, but this morning was just the three of us.  Next year will be funner because Madison will know what is going on a little bit better.
On the 21st as you may or may not have know Madison had her surgery for her hernia.  It was one of those days where nothing seemed to go right.  First off, Madison was supposed to stop eating at 4:30am so we set two alarms so that we could get up and feed her so that she wouldn't be too hungry.  However, Tyler and I were so tired that we ended up turning off the alarms and falling back asleep.  So poor Madison hadn't eaten anything since 11pm the night before.  Also, we slept so much that we didn't get up until 5:30am which was the time that we were supposed to be LEAVING, so we had enough time to change Madison and put her into her car seat.  Gosh sometimes we are bad parents.  So we finally get to the Children's Hospital and Madison is crying because she is so hungry, and we finally get her to fall asleep and as soon as we do, the lab comes to take some blood!  At 8:30 they take her into the operating room, for some reason as soon as the anesthesiologist came to see her she was all smiles, which made it so much easier on us when they took her away to the operating room.  Tyler and I went to the waiting room, and we were later joined by my parents who stayed with us the whole time.  Around 11:00am Dr. Ecceles came and told us that everything went fine and that she would most definitely be going home that day.  Dr. Ecceles also told us that Madison did end up having a hernia on both sides so she had both repaired.  Dr. Ecceles told us that the anesthesiologist was just removing Madison's breathing tube and then we would be able to go and see her.  What a relief...or so we thought...  Not even 10 minutes later the anesthesiologist  comes out and tells Tyler (I was downstairs meeting with occupational therapy), that he is unable to wake up Madison.  He said that Madison was not metabolizing the medication like she was supposed to, and that he didn't know how long it would be until she did wake up.  He also told Tyler that Madison was going to be transfered to the pediatric intensive care unit because her breathing tube cannot be removed until she wakes up.
Then about 20 minutes later the anesthesiologist comes back and tell us that Madison has woken up, and that in a few minutes we can both go in a see her.  20 minutes later only I was allowed to go in and see her.  I went into the recovery room and I didn't know where to go until I heard a cry, and very familiar cry, but just a little hoarse, and there was my baby.  She was so pale, and she looked so sad.  It was hard to see her like that, but a least she was awake. I was allowed to hold her, and feed her but she was so upset and tired that she wouldn't latch.  I gave her a bottle and that seemed to settle her, but during her feedings her oxygen dropped so they had to put prongs into her nose.  She had an IV in her foot that looked so painful, but she wasn't moving her legs at all so I knew that her spinal was still numbing her waist down. After about 30 minutes in the recovery room, we were transferred to the day surgery unit (she no longer need to go to the PICU).  Tyler, and my parents were already there waiting.  Madison looked so sad that I am pretty sure all of us cried.  For the rest of the day Madison just slept and cried for food.  Her oxygen would drop too low for her to be on room air, so they kept the oxygen in her nose for quite some time.  Later in the evening when she started to be more like herself again, she oxygen levels were much better.  At 8:00 pm they let her go home.
Since then she hasn't seemed to be in any pain, or have any problems with her two incisions, but we still have to be careful.  I just cannot believe what she has gone through in her life already, it is so much more then I have gone through.  She is so strong and she doesn't even know it.  Thanks for all of your prayers and love.

Sorry Nancy it's not a Sunday!

Hi,
So here is what is new, Madison needs to have her hernia repaired A.S.A.P.  so they are going to do the surgery on December 21st.  Dr. Ecceles said that groin hernia repairs are her number one elective surgery that she does so the actual surgery shouldn't be an issue.  However, the anesthetic is the bigger concern because of the fact that Madison's omphalocele has caused her respiratory system to be a little bit different then "normal" babies, so they are concerned about putting her out.  I met with the anesthesiologist today and he said that they will most likely put her out with gas, and then put a tube down her throat to help her breathe, and then they will also give her a spinal epidural which is similar to the regular kind of epidural given during childbirth, but a little different because they don't put the needle in as far.  The spinal will numb her from the waist down and it will also help with pain management after surgery because they are concerned about giving her Tylenol because of her liver function.  The anesthesiologist is concerned about her breathing after the surgery, so they will most likely keep her overnight just to keep an eye on her, especially because we live so far away from the hospital.  So please pray for Madison, and wish her luck.
On a different note, I just would like to thank all of the people at the Innisfail Lab for throwing a surprise shower for me last Thursday.  I really appreciated it, and it was perfect timing!  I love you all so much!
Also good luck to Nicole and Bentley tomorrow!!!!  So excited for you!!!  I hope everything goes well for you! We will pray for you and your family, soon to be plus one!!!

Watch as Madison gives her mother a heart attack...

Hi,
Well here's what you missed, last Thursday Madison and I went for our six week check up with our family doctor.  Which was supposed to be just a quick check, nothing big.  However, in true Madison form, the doctor found something.  A hernia in Madison's groin; it is called an inguinal hernia.  The doctor was surprised that no other doctor had found it.  This kind of hernia will need, you guessed it, surgery!  Hopefully the surgery for the hernia and the surgery for the omphalocele can be done together, I will ask the surgeon tomorrow.  Also, on Monday night everything was going just hunky dory, until...(there baaaack!!!)...white poops!  OMG!!  I see them and immediately started bawling my eyes out, the only think I could think of was biliary atresia...biliary atresia...liver biopsy...liver transplant...(and then more crying...you get the picture).  So Tyler and I decided that it the white poops were not gone by the next day we would call the surgeon.  So the next day, the big white poops were waiting for us, so I called Dr. Ecceles' office and I asked if she could see Madison today, and the receptionist said that Dr. Ecceles was on holidays.  The receptionist told me to either call my family doctor or come to the emergency.  So I call Dr. Hyde's office, and asked if I could leave a message for her, the her receptionist informed me that she was off for the day!  Just my luck.  So I packed up Miss. Madison and I also packed a bag just in case (plus if I didn't my mother would never let me hear the end of it, learnt my lesson), and we went to the children's hospital.  The wait was so short and most of the people were nice(one EMT told me to move up to the sign, just so the nurses could see me, and so that if any other people came there would be room; well, the sign was less then two feet away from where I was...man, some people really just need to find real work!).  Anyways, so the doctor came and asked us a bunch of questions...blah, blah, blah...then the lab came and took poor Madison's blood (which they got on the first try...finally), and then by the time all of that was done...Madison had yellow poops!!!!!!!!!!!  Can you believe that...gosh, you know I really hope she knows how many times she has almost given me a heart attack!!  So anyways, she has had yellow poops since then, and no one knows why that happened.  So Madison and I go to see the surgeon tomorrow, and hopefully Dr. Ecceles will take off the piece of umbilical cord that has been hanging on for dear life, it has started to detach itself, it is kind of like a wiggly tooth, you want to pull it out but it is so completely disgusting that you really don't want to have to touch it!  But it stinks!!  Anyways, ramble ramble...I will say goodbye.  I will let you know how the surgeon appointment goes.  Also this week I have a special treat, I am meeting with a lady who is having a baby with a giant omphalocele tomorrow.

Here's your weekly update...

Hey everyone, I don't know if any of you still check for posts anymore, but if you do here is a quick update.  Madison is gaining weight like she should, she now weighs 7lbs 1oz, so she has gained 1 whole pound since birth.  The dietitian that I met with on Thursday said that Madison is getting 150% of the amount of milk that she is supposed to be, she is making up for lost time.  We also saw Dr. Eccles on Thursday, who is Madison's surgeon, and she said that Madison's omphalocele is looking great, and so now we are beginning to apply gentle pressure.  Dr. Eccles was so pleased with Madison that she said that we don't have see her for two weeks, which it was supposed to be every week.  At home Madison is doing very well, she sleep good during the night she gets up about every 3-4 hours to eat, but then she goes back to sleep fairly well.  If you couldn't see her little pot belly you wouldn't know anything is wrong with her, she is just a normal baby.  Anyways, I will keep you updated with any new news.

P.S.  Nicole I would love to meet with you and talk to you about our little "o" babies if you want.  I wish I had someone to talk to before we had Madison.  I am pretty sure Tyler gave you our number, if not let me know and I will give it to you again.  Please feel free to call.

Mama I'm Comin' Home

Oh my gosh!  You will never guess what happened yesterday!  Madison got discharged from the children's hospital!!  She is now at home with us!  Best Day EVER!  Madison's liver function test are all in the normal range, her poop is normal color, and her weight is a steady 20 grams per day (which is what they wanted).  She is still on breast milk fortified with formula for extra calories, and also she is taking 4 mls of canola oil per day.  She is doing so good!  She has to go see her surgeon every week, and she will also have to be followed up with a pediatrician, but other then that she is ours!  So, I know you are all just dying to meet her, but if its alright we would like some time to just get ourselves sorted in our new surrounding, it's amazing how different it is being at home versus at the hospital.  No more weighing diapers, no more waiting 15 minutes for milk, no more nursing students spilling iodine all over Madison's clothes, no more nurses waking her up just to check her vital signs...I'm pretty sure she is still alive!, no more creepy housekeeping guy, oh man it is just so much better!!  Last night went really well Tyler, being the wonderful husband that he is, stayed up with Madison so that I could get some well needed sleep.  And today we just took it easy, Tyler made us a fire and we all just hung out and enjoyed each other.  Tyler and I are doing the daily dressing changes, and so far no problems, her little cover is pretty handy.  But it is not made out of neoprene like we all thought, it is made out of a thinner material, the occupational therapy lady said that all of the other covers she had made were out of neoprene but this time she wanted to try something new...thanks for experimenting with my daughter.  The OT lady was also supposed to make Madison a second cover, but hasn't yet, and if you saw how simple this cover would be to make, you would seriously wonder how she hasn't sewn a new one.  Anyways, thank you all so much for the support during our hospital stay!  I will keep you posted in terms of surgery dates, and such!  Love you all!

Yummy!

Just a quick post here.  I am typing with one hand while holding little Madison.  I just wanted you all to know that Madison's poop have color!!  Her liver function tests have also come back a lot better then they were, they are better but not best.  She is seems to be doing better all on her own.  She even gained weight today, 25grams only, but still a gain! So the liver biopsy has been put on hold by Madison's surgery team!!  They will give her two weeks max to get sorted and then the biopsy is back on the table.  The reason I came down here to blog was to say a big thank you to (great)Uncle John, (great) Aunt Dalphine, (Great) Uncle Chuck, (Great) Aunt Elaine, and cousin Kevin, for the wonderful package of goodies that we just received!  Unfortunately, Madison will not be able to eat any of it, so I guess I will have to..oh darn...  Thank you so much for your thoughtfulness!!!  Love you all, Meaghan and Madison

What color is your poop?

Hey y'all! Writing to you from the Children's Hospital in the Family Lounge.  We are just waiting for Madison's surgeon to come and have a look at the omphalocele, she was supposed to be here at 3:30 and it is now 7:30, but she assured us that she is coming.  Anyways, so this whole liver thing, has turned out to be something, but what we still don't know.  There are three causes that they have told us about, one being a problem with Maddy's anatomy like a kink, a cyst, or blockage in her bile duct.  The second is a viral, or bacterial infection that caused her to not secrete bile.  The third, and one of the worst in the group is a metabolic disorder, where Maddy cannot properly metabolize fats, or sugars, or certain proteins.  They have taken her blood 3 times (she has been poked 7, if only they had lab assistants like they do in Innifail!), they have sent away urine, and more is being collected now, she had one doctor come and take her poop away to look at it under a microscope.  Maddy also has now a new doctor team to add to her list, she is now a patient of the gastroenterology group. So we have been told today by that team that if they do not get any answers soon, the they will be most likely performing a liver biopsy...(you can gasp if you want to, we did!)  Anyways, hopefully it will not come to this but only time will tell.  The biggest concern right now is that she may have some condition that causes scaring in the bile duct, which gets progressively worse with time, so they need to find out if that is going on or not.  If it is they she will have to have surgery to remove the bile duct, and move up the intestines so that the bile from the liver can dump directly into the intestines, and be secreted like normal.  This is the worse case scenario, and the doctors are not leaning towards it right now, but they just wanted us to know why the liver biopsy is on the table,  and why it is so critical for it to be done soon. Anyways, the best case scenario is that the TPN (the nurtrients that got injected into her PICC) irritated the liver, and then with another underlying infection or irritation caused some sluge to build up in her system, and now the liver is having a hard time getting rid of it.  All we know is..well...nothing at this point, all that we do know is that all of this stuff started because of some pale poops, who know that the color of your poop could mean so much!

A little problem

Been really busy lately, and everything has been going good up until today. Today we found out that they think she has a problem with her liver.  They are going to do some more tests tomorrow and all we can do is wait for now.  We are both upset but trying to stay positive and it is hard not to worry.  A lot of things go through your mind and make you wonder. It's hard to explain what it feels like, I guess it would be like running a race and you think your going to win and then three quarters of the way you have to start at the beginning again. Except the prize is priceless. I am thankful for her health and progress so far, I just hope and pray this liver thing turns out to be nothing. If every one could pray for her liver to be fine, I think it will help.

Going...going...gone!

Hi, I am just writing to let you know that tonight, right as I got back from seeing Madison, I got a call from Foothills telling me that as of 10pm tonight Madison is officially at the Children's Hospital!  I felt bad that I couldn't go with her, but the nurse that was looking after her is going with her, and she assured me that Maddy will be just fine!  I am really excited, but really nervous too, change can sometimes be a very scary thing.  I hope that we won't have to start all over again with control freak nurses, and things like that.  I hope everything goes well.  Tomorrow I will be going to visit Maddy for the day, and then the next night I will most likely be spending the night at the Children's with Madison (if that is actually the way things are done).  So if the updates are few and far between you know why.  Anyways, talk to you all later.
ps Maddy has be nursing awesomely(I feel like that isn't actually a word), and she has not thrown up any of it!!!  Which is amazing!!

Hoppy Halloween!

Hello again!  I am here to tell you that Madison is now at full feeds of 19.5ml/hr and she is tolerating very well.  I am also here to tell you that I have now nursed her 3 times on 3 different days, and she hasn't thrown up any of it!  Madison's PICC is now out of her arm, meaning that all of the food that she is getting is straight up Mommy's milk!!  Unfortunately, all of that Mommy's milk is still bypassing her stomach, but today they shut off her continuous milk drip for two hours so that I could nurse her for her two hours worth of milk.  She probably ended up getting more then her dose but that is ok.  If she doesn't throw it up, that is a sign that I could probably nurse her more frequently.  Today Madison was moved to the level 2 of the NICU, actually making her no longer in the NICU, she is now in the special care nursery (SCU).  This is only a temporary move as she will most likely be moving to the children's hospital within the week.  The transfer team at foothills and the children's all know that she is coming, they are just waiting for her care to be transferred.  Originally they were going to transfer her to the surgeons at the children's, but in order for her to go onto the unit instead of the PICU at children's she has to have her care from a pediatrician instead of a surgeon.  Plus she isn't going to have her surgery for a while, so the surgeons don't need to be her primary care.
Also, Madison's echocardiograph came back showing that she has only one VSD (ventricular septal defect), which at her last echo, they said that she had two, and when she was in my tummy they said that she had three!  So apparently just one now, and unfortunately she still has blood flow between her two chambers because of it, but I guess they aren't too concerned with it right now, so that is awesome!
Madison's nurse made her a Halloween costume and here is the picture:

Hoppy Halloween!!!

Finally the milky way!

Alright, so today Madison's milk feed was up to 10ml/hr!!!  They are increasing it 3ml/day or 1ml/8hrs!  Full feeds for her weight is 19ml/hr.  They should be at full feeds by Monday, which means her PICC gets to come out!!!  We are so happy for that because it is such a pain to have all of lines and cords in the way when you are trying to cuddle her!  They are also going to be removing her oxygen saturation monitor so that is one less cord as well. They said that we can also detach her cardiac and respiratory leads while we hold, and although she doesn't need them, the nurses said it can't hurt while the leads are there anyways.  Today they also did an echocardiogram to look at the holes in her heart, the results will not be back until sometime next week.  Madison's omphalocele is looking great, and feeling even better; the sides are all really firm now, we are still struggling with the one pink spot we mentioned in a previous blog, but aside from that, all looks well.
Today the nurses wanted me to try nursing Madison, after I pumped so that she would only get a small amount, and we were all ready and Madison was awake, yet settled, and then I got her in position and within 2 seconds, she was asleep!  Fast asleep!  Silly baby!  So we will try again tomorrow.
P.S.  A huge thank you to Jenny for the yummy turkey supper, and turkey soup!  We have eaten both now, Tyler just couldn't wait one more day!  We haven't had the spaghetti yet, but looking forward to it!  Also a big thank you to Erin, Darcy, Katie, and Sam for the mysterious package I found at the back door!! We haven't eaten the lasagna yet, but you know Tyler has already been into the muffins!  The book is adorable and I can't wait to read it to Maddy!  Thanks to all of you guys for your thoughtfulness!!!    We love you all, almost as much as your cooking!! Just kidding, we love you more then food, well at least I do!! (Don't tell Tyler I wrote that!)

Getting ready to nurse, or so we thought!

Who wants a hug?!

Maddy did a bad bad thing!

Hi ya'll!  Just thought I would give you a quick update while I organize all of the pictures on our computer.  Madison was not moved to the Children's hospital because she actually tolerated her milk!!  She was on 1.50ml/hr, and then she was on 3.0ml/hr, and now she is on 5.0ml/hr!!  Her feeding tube looked like it was in the right position to follow down into her intestines, until Madison did a bad bad thing!!  She pulled out her feeding tube!! Now I know what you're thinking, because I was thinking the same thing, how does a 3 week old baby pull out a 32cm long feeding tube??!!  With mittens on!!  Apparently, she got her hand caught in the tube near her nose, and then just outstretched her long arms, and wham-o it was out!  She so nicely left 5cm still inside, but the nurses had been working so hard to get that tube in the right spot, so they just took it out and put a new one in.  This new tube seems to be in the right spot, so her feeds, like I said, have been increased to 5ml/hr.  The nurse practitioner has put up a sign on Madison's crib reading "critical tube"; (oh that's right Madison has a crib now!)  Also Madison is now 3 weeks old, and she got to wear clothing today for the very first time!  Actually, she was was kind of forced because the nurse wanted to tuck her left arm in so that she cannot for any reason get a hold of her feeding tube, she also is under strict orders to only have her mittens off under direct supervision.  Although Madison has managed to pull out two IVs and now a feeding tube, the nurses tell us she still doesn't hold the record for "most things pulled out by a baby", but we never found out what the record actually is!
Anyways, here are some pictures!

I am a bad girl, but I am too cute to be mad at!

  

Here is Madison with clothes on for the very first time! Her one arm is tucked into her sleeper.

These pictures were taken with a drawing feature on our camera

Should I stay or should I go?

Hello again, sorry for the long time with no writing, but I didn't really have anything new to report.  Madison was off her milk for the entire weekend.  They had her on feeds of 0.5ml/hr but she just threw that up.  They have tried advancing that tube that is supposed to be going into Madison's intestines, but all it does is curl up inside her stomach.  However, today they started the feeds again, well they tried to, but the tube that is now a total of 32cm into Madison's nose was clogged.  In fact, it was clogged so bad that they ended up having to inject coke into it.  Apparently, the coke will eat away whatever is clogging the tube, but it took the nurse practitioner at least 15-20 minutes to get the coke into the tube, so it must have been a large clog.  So they eventually got the tube running, and had Madison at 1.5ml/hr, and she seemed fine while we were there, totally settled...but as we know tomorrow will bring other things.  They started these feeds in hope that now that the tube has fluid running through it, it will find its way out of the stomach and into the intestines.  They have also started laying Madison on her right side because that is supposed to be the side that will lead out of the stomach, but as we know Madison's anatomy is a little bit different, so who know if that will work or not. This is that last step that they will make before sending Maddy for fluoroscopy.  Due to the feeding issues as of yesterday the word is out that Madison is going to be transfered to the Children's hospital sometime this week, actually today they said that is will probably be tomorrow, because rumor has it there is a bed with our name on it, but who knows what will happen by tomorrow.  Also, one other thing, last night Madison had two bowel movements, and one of them was quite large! (Mom, I know that this just made your day!!) Tyler and I think/hope that this will be that answer to the feeding problems, because Madison was tolerating her milk before, and then all of a sudden stopped tolerating we think that this is the reason, so now all her milk will digest with ease, and come out the other end, and not be thrown up!  I know that you are probably thinking it is pretty scary to be extremely excited about a bowel movement like we are, but when things come out that end that means something is working!!
  As you may or may not know we have been putting flamazine on Madison's omphalocele; flamazine is a medicine that they normally use on burn victims, it works as a topical antibiotic, and it also encourages the skin to  grow where there is no skin.  So in Madison's case, the flamazine has been put on the whole omphalocele and within the first application 95% of her omphalocele turned yellowish, which is the flamazine doing its job.  By now the yellowish part is thicker and harder, which will help with the skin to come up the sides, and also gives the sac some strength.  There is, however, one spot on the top of her omphalocele that has never changed in color or texture.  Until recently that part was just flat and pink, nothing too exciting, but yesterday Tyler and I noticed that the pink part is bulging out, so the surgeon came to see Maddy this morning, but she never took off the dressing, so she never actually got to see that part.  During the dressing change today, we had the neonatologist, and the nurse practitioner look at it, they seemed a little concerned, so they phone the surgeon.  The surgeon said that she thinks that it is just a bowel loop, and that it is not anything to be concerned about, she also is confident that it will eventually granulate, and harden just like the other areas.  This is good!
So I guess we will find out if our little one is being moved to children's tomorrow or not, but I kind of hope so!  It seems that they have the best team for feeding problems, and also the surgeons will be able to see Madison daily instead of weekly.
Here are some pictures of Madison's grandparents, holding her for your viewing pleasure:

Grandma Diana

Grandpa Dan

Grandma Sherrill

Grandpa Tim

Tummy Tug-of-War

Good evening all!  We just got back from Calgary so I thought would quickly update you all.  First, I would like to start by making a correction to the blog that Tyler had written this morning; he wrote that the nurses were trying to advance Madison's feeding tube from her stomach to her esophagus, but what he meant was from her stomach to her intestines.  So last night they had advanced her feeding tube 2 extra centimeters from what it was, in hopes that it would make its way into her intestines bypassing her stomach altogether, and then they were going to shoot an x-ray to check the placement of the tubing.  However, as we learned today when we arrived at the the hospital, Madison had been started on her continuous milk feed of 1.38ml/hour at midnight, and they were stopped at noon today.  The feeds were stopped because Madison started throwing up large amounts of milk, pretty much she threw up all the milk that she had been given, so none of it made it through.  Also, the conclusion was that the feeding tube had not bypassed the stomach, and was still sitting in the stomach letting all the milk accumulate. So today the doctors decided that they are going to try advancing her feeding tube another two centimeters, and then shoot another x-ray in the morning. The idea is that the tube will eventually find the way out to the intestines, but the only way to be sure that it is in the right place is to x-ray the tubing.  However, because of the omphalocele, the x-ray is apparently really hard to read, but this is the only option for now.  The next step would be to send some sort of tracer down, like barium, so that they could watch the movement, or lack thereof, through Madison's system.  This way they would be able to look for any obstructions, or kinks.
 While we were at the hospital Madison started throwing up again, so she has not been given anything by mouth since the feeds were stopped at noon today, and she will not be given anything by mouth again until at least tomorrow morning.  Also the surgeon stopped by today to watch our new dressing change, and he was saying that they are going to start talking about moving Madison to the children's hospital again.  He believes that they have a better support team for babies that are having feeding problems, such as an occupational therapist that will help Madison get pleasure from her mouth, so that when she is able to feed properly she will still want to, also they have a nutritionist, and basically a whole team of professionals just for feeding and gastrointestinal problems.  So back and forth we go from feeding to no feedings, to moving to the children's hospital, to staying a foothills...
Aside from all of the feeding problems, and throwing up Madison is still a calm and happy baby.  She only fusses because she is so hungry, she sucks on her soother, and my finger, and her hand, and anything else you will let her have...poor girl she wants it, but her body will not let her have it; it is tummy tug-of-war!  Madison doesn't appear to be in any pain, or suffering in anyway, I just wanted you all to know that.  We have been holding her everyday, and giving her all the kisses and love that we can, and all the kisses from you guys too!  Thanks for all your support, and pray for our little girls little tummy!

Detour on Milky Way

Hi everyone

I know you get tired of the ups and downs of the milk story, but yesterday was another bump down. They tried feeding her with a bottle and found that the milk did not move through her stomach. They wanted to try this to see if it would work better then the continuous feed through the tube that was going to her stomach.  When we saw her yesterday she was not getting any milk, and she was sooo hungry! It is hard to just watch, listen and not have control over the situation. I want to take control and be like you should do this or this and have you tried that. I have to remind myself that these Doctors and Nurses have Madison's best interests at heart and to let them do their job. The best thing I can do is be there for her and know that it will all work out for little Madison.  We did give a list of some of our favorite nurses to the Charge Nurse, in hope that they will become her primary nurses. We did this because with her feeding troubles she will be at the Foothills for a little while longer, how long is anybody's guess.  The next plan they are going to implement, is to put a tube down that can be X-Rayed and push it through the stomach into the esophagus. They hope this will work until her stomach can digest the milk properly.  If this does not work they will have to put a tracer fluid through her and watch the path it takes to determine where the problem is. No one is really sure what is what and where it is in her omphalocele. This is the last option, because they want to do the least evasive options first.  So cross your fingers for todays news.  Every day is an adventure for Meg, Madison and I.

All the bad days paid off!

Oh my goodness!!  Yesterday was probably the second best day of my life!! First of course being October 6th when Madison was born!!  When Tyler and I first when in to see Madison, we were stopped by two of the nurse practitioners that we love, they talked to us about Madison is now back on her milk, at 1.38ml/hour, they told us that they figured when the feeding tube was in before it wasn't in far enough and that all the milk was just going right into Maddy's esophagus, which would explain why she kept spitting it up.  The nurses told us that normally they us the belly button as a landmark when inserting the feeding tube, but because of Maddy's defect she has no belly button.  So with the insertion of this new tube, they did x-rays to see where the tube was, and to make sure it was in the right spot, now the tube is a whole inch deeper then the previous tubes.  This is just the beginning of the good news!
Also the surgeon from the children's hospital came in and completely changed Madison's dressing.  The surgeon said that we do not need to put the medicine that we were putting on Maddy's omphalocele anymore, because the sac is granulating, and the skin is growing, so no more medicine is needed!  The surgeon was very impressed with the rate of the skin growth, and the shrinkage of the sac!  The surgeon also thought that having her dead umbilical cord tied to the bed was not only gross, but unnecessary so she cut the cord!  Which means Madison is no longer tied to her bed!!  Which means...I got to hold her!!! For the very first time, I got to hold my baby!!  It was the best thing in the whole wide world!! She was awake and looking right into my eyes, she is just so beautiful!  She didn't stay awake for very long though, but she woke up pretty fast when I had to put her back into her bed.  Later that night Tyler also got to hold her, he was a little awkward at first, but we got him sorted out.   There is still no word on when the big move to children's is happening, but it could happen any day now.  We will keep you in the loop!

X-rays, blood gases, and suction..oh my!

Hi all!  Well yesterday was another one of those backwards days.  Madison was again taken off of her milk, and  was not allowed anything by mouth!  Apparently during the night the nurses were able to suck out quite a bit of milk from Madison's tummy, so they got scared and stopped her milk.  Not only did they stop the milk they also thought that they should do some x-rays, which came back showing, what looked to them, like a dilated intestinal loop...whatever that means.  So Madison was left with just her TPN, which is the nutrients that she gets from her PICC line.  However, later in the evening when Tyler and I were there, Madison started spitting up quite a bit of "yellow stuff" (thats what Tyler and I call it), so the nurse paged the doctor, and he decide that they needed more x-rays..oh joy!  Those x-rays showed no dilated intestinal loops, but it did show a big gas bubble in her stomach.  The doctor then decided that they needed a blood gas, thankfully they were ok with just a capillary blood gas, so they just took blood from her heel.  The blood gas came back very good!  After that, the doctor decide that Madison needed her repogle  tube back (which is the tube that was suctioning her stomach), but this time the nurse is going to put it in Madison's mouth instead of her nose, and she planned to use a bigger tube.  This was the time that we left, there was no way I was going to watch the nurse shove a tube down Madison's nose or mouth!  Earlier that night the nurse had suctioned Madison's nose out, and I couldn't watch that either, the sound alone was horrible.  We were glad that they were going to put the tube back in to suction Madison's stomach out, because with her always being on her back, she could easily aspirate, or choke on the "yellow stuff".  Amongst all this action, on a positive note, Madison did have bowel movements, and she had great bowel sounds, so some of the contents of her stomach were making their way through, so she obviously has no obstructions, or problems in that way.  Tyler and I believe that the reason that Madison had such a hard time with the milk feeds is that the nurses increased her feeds too quickly, they went from 1.2 ml per hour to 3ml per hour in 2 days!  We believe that is too quick of an increase.  The doctors believe that feeds as a whole started too quickly, and that she never should have been fed milk at all yet.  However, as we have learned the opinions change as quickly as the staff, so by the next shift change we will have a new theory and a new plan of action.  Until then...

Milk Milk Milk

Hi everyone! Just a quick little update on Madison. She has been doing really well on the milk and it has been making it through her system with ease.  They have increased the amount of milk she is getting per hour! She is also sleeping through the night better and the omphalocele is still shrinking nicely! Grandpa Tim is down from Ontario and is going to meet Madison for the first time today. He is so excited he can't wait, he is even getting his hair cut before he sees her. Grandma Sherrill, Grandma Diana and Grandpa Dan visited yesterday and I have some good pictures of them with little Maddy!

Grandma Diana holding Madison's hand!

Grandma Sherrill

Grandpa Dan

Grandma Diana

One step forward and two steps back...

  Yesterday my mom and I showed up to visit Madison, Tyler couldn't come because our furnace broke so he had to stay and fix it.  It seems all bad things have to happen at once, first the furnace fan belt went, then the whole complete motor seized!  He was pretty upset with having to stay here instead of coming to visit, but there is always tomorrow.
  So when my mom and I showed up to visit we found out that last night Madison was crying all night, and not really being herself, so the nurse suctioned out her stomach, and found 30 cc's (close to 1 oz.) of milk in her stomach that hadn't been digested.  Madison was on a continuous feed of only 5ml per hour, so having that much in her stomach was a red flag.  And as you may have guessed they took her off of the milk, and now she is again to have nothing by mouth.  It is one step forward two steps back, but we were warned of that.  They said that they will try again tomorrow, so hopefully that will go better.  Madison is so hungry though, when we were there she was trying to get a hold of anything so that she could put it in her mouth!  She is also losing weight like crazy, I think she has almost lost a whole pound!!
   Although Madison was up all night crying she slept all day until we got there, and they she was wide awake looking right into our eyes with her big eyes that somehow look right into your soul.  She is just so beautiful!
  Also, with the dressing changes that we do daily, Madison's omphalocele is measuring 5 cm from the top down. The other day Tyler and I seemed to notice that it looked smaller, so now I measure it during the dressing changes.  Also the sac is turning yellow, and some parts are becoming very dark; the sac is still not hardened but it's getting there.

Hello all!  Again today we helped with the dressing change, while we were doing the change the surgeon from the children's hospital came to see the omphalocele without the dressing on it.  While he was there he wanted to chat with us about the future plans for Maddy.  He said that they are now going to feed her my milk!! They are going to feed her through that same tube that was originally sucking out her stomach. They are going to do those feeds for a while and depending on how well she does then they will change her to bottle feedings!!  They also want to give her some milk on a q-tip and have her suck it off, they said that if you wait too long to give babies food by mouth they then later forget to feed or they will refuse to feed by mouth.  So that is wonderful news!!  Also the surgeon said that they are planning to transfer Madison to the children's hospital by the end of this week.  He said that she is not sick enough to stay at Foothills!!  The surgeon also said that once Madison is at the children's occupational therapy is going to come in and fit her for a neoprene cover for her omphalocele that will put gentle pressure on the sac and slowly put the organs in her abdominal cavity.  He reminded us that we will have to be patient because it is a long and slow process.  I asked him about when we will be allowed to hold her, and he said that as soon as the sac becomes harder, and she gets the special cover we will be allowed to hold her and walk around with her in the hospital!!! So hopefully the transfer will take place this Friday, but anything can happen.
On a different note, Madison's blood cultures came back fine, again, but unfortunately, the CRP blood test that they did came back high, so today they did a lumbar puncture on her!  They took some cerebral spinal fluid so that they could culture it.  The preliminary screen showed that everything was fine, but they have to culture the fluid, so it will be a few days before the final results are in.  The nurse practitioner that we saw yesterday came over that talked with me about the lumbar puncture and she said that they did it because some babies can have meningitis even though their blood cultures are negative.  I also over heard her in the evening rounds telling the staff that they did the blood cultures and the lumbar puncture because there is a tear in the omphalocele sac, but in all the days of doing the dressing change we have never seen any tear...I don't know why no one told us about this tear that by the sounds of it happened at least a few days ago.
So tomorrow I have to go to the doctor for my lovely blood pressure that even now has been through the roof!! Who knows what they will do to me, but hopefully nothing too crazy like making me stay at the hospital for two days!
Anyways, talk to you later, I am going to bed!!

Diaper Doughnut

Hello there!  I just thought I would give you all a little update, not that there is much to say.
Madison is still doing great!  Her tubing that was is sucking out her stomach contents was irritating her stomach, so the tubing was sucking out quite a bit of blood, but now that has all cleared up and she is off of her medication for that.  They did a blood culture on her when she was first born, and until the results came back to be safe they put her on antibiotics.  The results came back, and her blood has no bacteria, so they had taken her off of her antibiotics.  However, today we arrived and they had put her back on her antibiotics because the doctor wanted her on them for a full week, and they took more blood for cultures today.  Yes, that means they shaved more of her beautiful hair!! The hair that I suffered with acid reflux for so long for her to have!  The reason that they think maybe she has an infection is because her temperature was a little high, and by little I mean like half a degree!!  The nurse practitioner told us that they are always going to be too cautious with Madison because of her omphalocele, she also told us that she was under the impression that they weren't going to start her back on her antibiotics until the results from her blood cultures came back.  Apparently, Madison's nurse never got the memo and started her back on the meds....communication between staff would be nice.  Anyways, there isn't much we can do, we just have to rely on the fact that they know what they are doing.
Today, we again helped with the dressing change of the omphalocele, things were done a little different, but I think the changes were for the better. They were just small changes in how certain layers were put on the sac, and the support doughnut that went on the top around the base of the omphalocele used to be two washcloths, is now two diapers rolled up.  It looks funny but they are a lot softer on her skin.  After the dressing change Tyler got to change Madison's diaper; it's so funny how we are both so excited when we are even allowed to do that!  Once Maddy had a clean bum, we help the nurse weigh her.  We all worked together to lift her on and off of her isolet so that her bed could weigh her.  That was the closest we have been to getting to hold her.  Pretty sad that she is 5 days old and we haven't even held her yet.  Makes me cry just thinking about it.  I feel like she isn't even ours yet.
During the dressing change the nurse gave Madison some sugar water (even though I am pretty sure she wasn't supposed to) to calm her down.  I was holding her hands up away from the omphalocele, and she found my finger and started sucking on it!!  She sucked on my finger for quite sometime, it was the first time I felt like she and I had actually bonded, it was the best moment ever!  
Anyways, I better start to get ready for bed seeing as it seems to take me forever now between the pumping, and the pain.  Love you all!

P.S. Thanks to our wonderful neighbors who brought us some flowers, and some delicious stew and buns; which we had for supper tonight!! YUM!!

Here is a picture of that magical moment I was telling you about!!

Madison yesterday holding onto the teddy that I spent 2 day with it down my shirt to get my scent on it for her.

And now what you've all been waiting for...

Hello all, we got home last night and Tyler told you all that I would be writing a post, but I was too tired, sorry!  Anyways, we came home last night after assisting with Madison's dressing change which Tyler told you about.  We got home and it was a pretty uneventful night, just pumping milk, and pain management.
  So Madison is beautiful and perfect in pretty much every way!  She never actually cries she just kinda makes a little squawk, once in a while.  She was 6lbs 1oz, 47 cm long, with a head circumference of 33cm.  She was born at 4:47pm on October 6, 2010.  So far she has had an echo-cardiogram, a abdominal ultrasound, a spinal ultrasound, and blood work (with the blood work they shaved part of her head, she has the softest hair). The results are:  with the heart she has two holes, one very small, and the other larger but not super huge.  They said that the smaller will likely close up, or cause no problems, and the other may need some repair work in the distant future, but not necessarily open heart surgery like previously discussed!!  We are sooooo amazed!  They said that they may be able to put in a catheter into the heart and place a patch on the hole!  With the abdominal ultrasound they found that she has some swelling on one of her kidneys, but they said it can be just a normal occurrence, but it is something that they will keep and eye on.  The spinal ultrasound was done because apparently babies with omphaloceles can also have spina bifida, which is when parts of the spine do not fully close over the spinal cord, leaving the cord protruding through the bones, pretty serious!  But little Maddy's spine looks great! yay!!  The blood work was just a basic complete blood count, and they were going to send some kind of clotting factor, but it clotted before they could get it tested, so I guess no clotting problems!!  
Right now Madison is not allowed anything by mouth, she is getting all her nutrients through her PIC line. So because of her having nothing by mouth, her lips have gotten really dry, so they were going to use sterile water to  wet them, but the nurse we had suggested using some of the colostrum for her mouth. She liked it, she couldn't have any in her mouth, but once she had it on her lips she was sucking her soother like nobody's business! However, now that we have a different nurse the mouth care has changed to sterile water, don't ask me why!  GRRR!!   She also has a tube in her nose, which used to be in her mouth, and the tube sucks out everything that goes into her stomach, just in case there is a blockage somewhere in her intestines they don't want anything getting past her stomach.  Being the little trouble maker that she is, they had to put socks on her hands because she keeps trying to rip out the tubing.    So now here she is.....

learning how to dress

Hi everyone, sorry I did not wtite yesterday, it was busy and I was lazy. Yesterday we helped with Madison's dressing for the first time. It was a real process, it took four of us in total. One to hold her feet, one to hold her hands, one to support the omphalocele and one to do the dressing. Our main nurse taught us yesterday, and today we helped the new nurse through the steps. We are learning so many new things, it is crazy! Meaghan has been learning how to pump milk, and is doing so well! This is just a quick little post, we are finally coming home for the first time and Meg is going to write tonight.
Thanks to our nieces who sent me us picture they painted welcoming Madison, thanks Hannah and Shelby for the nice art work!

Madison's first day

First off, I want to thank everyone for their comments, your care, love and support is stong, and we apreciate it. Today was sooo busy and exhausting for Madison and ourselves. Meg was not feeling well this morning, every time she tried to sit up she would get dizzy and have to lay down. She was getting upset because she wanted to see Madison so bad, but her body did not want to cooperate. After a lot of effort, determination and a couple of hours we were on our way. When we got there they were in the middle of an ultasound of her heart, and ushered us away. Meg had only seen her for a brief moment the day before, so she was understandably upset. We went back later with grandma McGuire, who jut arrived from Ontario. We got to spend a lot of quality time with her, and our day nurse was very helpful. Because of the omphalocele, we can not pick her up, but we can touch her. The omphalocele is about the size of an orange and is contained in a sac. She has gone pee and poop, so things are working, what a relief! They have her in a special little bed that has a heater, humidifer, and a roof that raises up. She is hooked up to all kinds of monitoring equipment. She ripped out two IVs until they got a pic line in, she is a little fighter! She has long fingers and long feet and a tiny little body. She is also breathing on her own which is awesome! For now they are dressing the omphalocele with some type of dressing and what looks like saran wrap! They say she is doing well. My parents came in the afternoon, and got to meet Madison for the first time. We found out that grandparents are the only ones allowed in the NICU unit, no brothers or sisters. Strict! You also have to scrub with a soapbrush for 2 min before you can enter. Anyway by the end of the day a lot of doctors and nurses had poked and handled Madison. She had a long day and was tired when we said goodnight to her. I am going to go to bed my self, it is late. Pictures will be coming when I get home, I am writing in the blog from my phone, and can't upload pics.

Madison's Birth

Hi Everyone
It is almost midnight and I am just finally catching you up. What a scary and exciting day. First off was the epidural deal, they have the husband wait outside until it is finished. The reason for this, was too many husbands passing out, or so I was told. From where I was sitting I was not supposed to see, but I discovered that when I slouched in my seat I could see under the blind! I watched them clean her back with a solution, then put a small needle in her back, then a bigger one and finally inject the stuff that freezes her from the waist down. It was wild to watch and was going fine utill they layed her down. After she layed down she looked like she was going to pass out, with everyone rushing around it was clear something was wrong. I have to admit I was scared and wished I had not snuck a peek! I found out later that her heart rate had dropped fast and she was going to pass out, so they gave her a shot of epinephrine which straightened her out. After that was under control they brought me in and I sat at Meg's head comforting her and not looking at the c section procedure or I would have passed out! Then the magical moment came when we heard her cry and knew she was out and safe. I looked over at her and my heart was flooded with love. She is so tiny and precious. The surgeons are going to decide how to procede next with her care. They are most concerned with her heart and want to make sure she is strong before doing surgery on her stomach. I will keep you up to date with the details as they unfold.
By the way Meg was super brave and never let on how scared she was. She is amazing!

Baby is here!

Just wanted to take a quick second to tell everyone that Madison came out healthy and screaming! Meg is in good shape too! Don't have much time to write, I will elaborate late tonight. Madison is so beautiful!

Today is the day...

Well today is the big day, and I am so excited, I just can't stand it! Meg and I are sitting on her hospital bed playing games trying to stay relaxed. It's hard to imagine the day is here, it seems like just yesterday we were telling people we were pregnant. The nurse is going to put Meg on a IV at noon. The c-section is scheduled for 2:00pm. Bye for now, Meg and I are going to play some cards.
I will keep you posted on the action!

Panic! Panic!

Hi Everyone

Today Meaghan went for her weekly ultrasound and discovered that Madison had not grown any since last week. So instead of her being born on Oct 12 now she is being born on Oct 6, this Wednesday! The doctors want to get her out as soon as possible , so now only one day away! On top of that they are keeping her at the hospital from now on. We thought we had another week and now it is happening right away! I am in panic mode trying to get all Meg's stuff together, getting all the things in order to leave my job for a while, and all the other final preparations to be made. I am excited, scared, anxious and hoping all goes well. I pray that Meg and Madison come through this safely. I can't wait to see and meet Madison for the first time. Nothing in my life has come close to this feeling, and nothing has been as important. Well except marrying Meg!

Got to run, it is 10:00 pm and I have more work to do!

36 weeks and counting...

    Hi there!  Sorry it has been so long, but I haven't really had anything new to write about.  Well, as you may remember I had to go for my weekly check ups on Monday.  Tyler's mom, Diana came with me this time, which is always nice to have some company.  So our day started out with my ultrasound appointment, which they were really behind because they had two techs. call in sick, so instead of starting with the ultrasound, they actually started me on the fetal monitor, for the non stress test.  Thankfully this time Madison actually co-operated, and the test was done without any problems.  Next, we went for the ultrasound, and that was nothing new except that the tech. maybe didn't know what she was doing; she was measure the abdomen all wrong, and actually asked me how to do it!  Thankfully we got through that, but because of the way she measured the abdomen and omphalocele, the weight of the baby ended up being around 8 pounds!!  Dr. Simrose, the perinatologist, assured us that the baby probably weighs closer to 6 pounds.
   After that little adventure which took close to 2 hours, we went to my Dr. Cooper appointment.  Nothing really new there, except that our date has changed!!  Apparently the surgeon, and the neonatologist were not happy about the baby being born on a Friday, so they moved the date to after the long weekend.  October 12,2010 at 8:00am!  (oh yeah, even a time!)  Hopefully this is the actual date, but you never know!  I will keep you in the loop!
  Sorry I don't have anything too exciting to talk about, but in this situation no new is exactly what we want!!   So, because this story is so uneventful, here is a picture to make it worth your time!  : )

Here is Madison's face at our
30 week ultrasound.

Just another ultrasound...

Today Tyler and I went to an ultrasound together.  Like I had mentioned before, Tyler has not been to one of my ultrasounds in a long time.  He was really looking forward to being able to see little Madison's face, but already starting to take after her father, Madison was being stubborn and wouldn't lay in the right position.  So Tyler never got to see her face, or her profile.  However, the sonographer showed us the back of her head with she said has hair on it!!!  Other then that the ultrasound what pretty much just measurements, and all that boring stuff.  After my ultrasounds I have been going for a non-stress test, and like before Madison was not co-operating!  Every time the nurse would position the monitor so that they could get a reading on her heart rate, she would move and the nurse would have to look for it again.  We finally got the monitor in a position that worked at least long enough to get somewhat of a reading, but I had to push the monitor pretty hard into my stomach; what a stubborn child!  When all was said and done Madison's biophysical profile received 8/8!!  She weighs approximately 1.9 kgs, the weight is always kind of a guess because they sometimes do not include the measurements of the omphalocele.
  After the ultrasound, and non stress test we had just enough time to grab a quick bite to eat before going to see Dr. Cooper.  Dr. Cooper, I may have mentioned. is my obstetrician, who I actually never really get to see.  I book appointments with her, but it is always some other doctor, or resident that I end up seeing.  Today was no different, I was seen by a different resident, which was fine, she was really nice and helpful.  We told the resident that we were wondering if we could get a date for the delivery of the baby, and she actually said  YES!!  I have been given the run around for some time now, so a date was like a mini-miracle.  The resident talked with Dr. Cooper, and they had decided on October 8!!  Right now this is only a tentative date, because the labor and delivery unit has to confirm, but they are pretty confident that this will be the date!!  We are so excited to have some kind of idea, so we can prepare!  Thankfully our last day of work is October 1st!!  If the delivery date changes I will be sure to let you know.

Keep your comments coming we love to hear from you all!!
 

Madison's Room

Hello there!  Today Tyler's parents are coming to visit us, and so that got me wanting to do the last finishing touches on Madison's room.  We bought some things before we found out about the long stay in the hospital, we have since stopped buying things.  The only things that we really need to buy now are sheets, and clothes; stuff that we won't actually need until she is home.  So here are some pictures of the project so far.  We are going to buy some side tables on Monday when Tyler and I go to for another ultrasound, and doctors appointment.  This will be Tyler's first time coming with me to Calgary for an ultrasound!  I bet he will be so surprised when he sees the changes from the last ultrasound he saw which was at 20 weeks, and this one which will be at just about 35 weeks!  Anyways, here are those pictures!  Hope you enjoy them as much as we enjoyed making up her garden themed room!

This change table we got on Kijiji, with the crib to match!

This is the bug mobile we got at Ikea
I haven't hung it yet but it is super cute, and
our dog Ollie just loves it, so we have to
be careful he doesn't eat it!

Love makes a garden grow!  

This is the crib that we got on Kijiji!

This is Sully, we bought him about 2 years ago
for when we had a baby!  Notice the blanket
I knitted!