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!!!