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.