Missing BOTH of our munchkins :(

We are so very proud of Abigail for what going through what she's had to endure, and taking it all like a champ! They finally got her pain under control. She went from Nubain every 4 hours, to every 2 hours, to a constant drip, then to a constant drip PLUS extra, and now she's back at the regular constant drip. She's had a little roller coaster ride of pain there for a few days. She has a bunch of tubes in her and attached to her, which of course is heart breaking for Ian and I. She has an Andersen (through her nose into her tummy), a catheter (which was actually JUST taken out...YAY!), 2 IV's, and then the 4 leads that monitor her oxygen level, heart rate, and respiratory rate. So, a total of 8 cords coming from her. It's not fun to pick her up and move her from her bed to my arms, somehow everything gets ridiculously tangled in the 3 second process haha.

Like I said, she had her Foley catheter removed this morning and they went from suctioning out everything in her tummy with the Andersen tube to putting the tube down beside her bed and doing a down-drip, aka letting gravity suction anything that she may have in there. It's the first step towards getting her to be able to feed! Yay! She'll start with about 15-20 mL of milk per feed, which is less than an ounce, and it will (hopefully) double every 24 hours, depending on how she's tolerating it, until she's at 70 mL every 3-4 hours, which is a little over 2 oz.
It's quite sad to leave her at night, We've been told, and have noticed, that she is very aware of when we're there and not. She gets very fussy when we leave and perks right up when we return. It's amazing how much they notice at only 5 weeks. She's a normal, smart, healthy baby aside from this stinking Hirschsprung's Disease! We're truly blessed!
Unfortunately we have to continue her irrigations (mini enemas) for quite a few years. Hirschsprung's babies run a great risk of developing Hirschsprung's Associated Enterocolitis, or HAEC. This is where the bacteria in the large intestine becomes unbalanced and the intestine swells. The unbalance can be caused by something as little as teething or the flu. Aside from the late diagnosis, or lack of Hirschsprung's diagnosis, this is the leading cause of death in children with Hirschsprung's. So, pretty much I'll be a paranoid psycho for the next 6 or so years, watching over Abigail :)
Luckily Abby only had a miniscule 3 inches taken out of her intestine. Best case scenerio BY FAR! Her surgery went over 4 1/2 hours, but it's awesome to know that she has short segment rather than long segment, which means that the HD (Hirschsprung's Disease) is most likely not genetic. Unfortunately though, the genetic form shows itself more in females, so we're praying that she never has to deal with her children having this passed onto them. HD is also more rare in females. For every 1 female that has the disease (which is rare to begin with), 4 males have it.

Rosalynn is doing wonderful! We talk to her multiple times per day and have been able to Skype with her, as well. She is having such a blast at Grandma's house! One would think that after 3 1/2 years of noise in their house, that the silence would be welcomed. It's not. I miss it and can't wait to have us all back together under one roof! 

Abigail and her surgery

Abigail has Hirschsprung's for sure. It's unfortunately been confirmed with her biopsy this morning. Her surgeon, Dr. Meyers, has been wonderful. We've been told that the U of U Surgical team at Primary Children's Hospital are among the best! We believe it :)
Abby is scheduled for surgery on Thursday, Jan 17th. The surgery should last 3-3 1/2 hours total. There are essentially two options for surgery, either she'll need two surgeries or just one. We're obviously praying to just have one!
Both of the surgeries start with them going in with a camera and doing more biopsies up Abigail's large intestine. They have to see just how far up the abnormal cells go. They will remove the portion of her intestine that has abnormal/no ganglion cells. One of two things will happen at this point:
A: They remove the small portion of intestine that is abnormal and re-attach the intestine to her rectum. Her surgery is done...THIS is the outcome that we're praying for! If I have researched and heard Dr. Meyers right, the incision will be in her rectum, so she'll never have a visible scar!
-or-
B: The amount of intestine with abnormal cells is too large for a one-step surgery. They will cut off the intestine to the rectum and do a colostomy. Abigail would have a bag until about 6 months, then would go in to remove the bag and remove/reconnect the large intestine to her rectum. This is the option that I would less prefer. She would have scars from the bag and have more than one surgery.
She will have to stay in the hospital for 1-2 weeks, depending on how well she does after surgery. And, of course, being that it's bowel surgery she won't be able to eat for a day or two. We were also under the impression that Hirschsprung's was hereditary. Well, it SOMETIMES is. The larger cases, which are about 20% of Hirschsprung's cases, are usually the hereditary ones. Basically, when there are NO normal cells in any of the large intestine. Abigail can go potty on her own in between the two enemas we do a day, so we're thinking that this is not the case. Correction....we're praying that this is not the case.
My heart breaks for her, but I do feel as if we're blessed that she doesn't have anything that is more serious. She might have some issues later on in life, after the surgery, with incontinence or constipation. But, she has her life which is more important. When they repeatedly told me, before they finished her tests and put her in the NICU, that they didn't know if they could fix her problem and save her, I thought we were going to lose her. I think Ian and I both thought that, they were pretty sure that something was drastically wrong with her small intestine, which can't always be fixed. So all in all, I may be stressed, but I'm happy that this is the outcome. At least I still have my 2 beautiful girls!!!
I also just have to say that going through this has made me realize how many people care and how loved we are. Thank you everyone for your support, prayers, and offers for help! We truly feel blessed!

**EDIT**
Feb 17th...not Jan...I'm out of it!

What's going on with our Abby...the long version

I think that most everyone knows that our little Abigail Grace was born on January 13, 2011 at 10:39pm. She weighed 6lbs 4oz and was 20in long. I had the perfect labor and perfect delivery. Everything went so smoothly...a far cry from Rosalynn's....it was an amazing experience. Rosalynn immediately took to her little sister when she came to visit the next day. They're perfect...not to toot my own horn, but we make cute kids :)

Abigail did start having problems from the start. She would not eat for quite some time. Finally, when I got some food in her she started spitting everything up. Not a big deal, her body is new, it's just figuring everything out. She also was not maintaining her body temperature well at all. This however, self corrected itself within the first 24 hours of her life. As for her tummy problems, I told the hospital nurses and doctors everytime I fed her, how much, and how much she was spitting up. She also never passed her meconium (sorry if that's TMI). They were obviously not in the least bit concerned, because they discharged us and we eagerly went home.

Once we got home, (of course she waited), her spit-up turned green. Of course, I was even more concerned, so I made an appointment with a pediatric urgent care. They called us back within a hour and told us to go straight to the ER. We went to Davis Hospital's ER, they did a chest x-ray, told us that her stomach was distended, and transferred us via ambulance to Primary Children's Hospital in Salt Lake. Their immediate thought was that Abigail's small intestines were twisted and causing a blockage. If that were the case, she'd need emergency surgery. This part may be TMI....they then did a contrast test. They injected dye through her nose to inspect her small intestines and they did the same through her bottom to inspect her large intestine. They also stuck a tube down her nose to pump her stomach of all the ickiness.

The Radiology doctor let us know that he could not find anything wrong with her small intestine. This was good, all of the problems that could happen with her small intestine were the hardest to fix, so we were very pleased. He also could not find any blockages in her large intestine. This left us with 2 "most likely" options. She's either one of the 2% of babies who's colon and instestines do not wake up within the first 48 hours, (Extremely rare, and is seen primarily in a baby who's Mommy had diabetes), or most likely she has short segment Hirschsprung's Disease.

Hirschsprung's (HERSH-sproongz) disease is a condition that affects the large intestine (colon) and causes problems with passing stool. Hirschsprung's disease is present when a baby is born (congenital) and results from missing nerve cells in the muscles of a portion of the baby's colon. 

Basically, the nerves in her large intestine do not work correctly. Today the surgical team came up to do a biopsy of her large intestine and we should know in 24 hours if she has the disease. If she doesn't, she's either in the 2% or we're back to the drawing board. If it is Hirschsprung's, she'll need 2 surgeries, one to put in a bag in the meantime, and another to cut the damaged intestine out and reconnect the good parts.

Luckily she's been pumped of everything that was making her sick and drained of her meconium and everything else backed up in there, so her tummy is feeling a little bit better. She has been such a little trooper through this whole ordeal. She's doing an awesome job. I think Ian and I have cried more than she has, and it's not us getting an iv in our head, tubes down our throat, things stuck up in places that they shouldn't be, etc. We're so proud of her :)

We're just hoping that we get some good news and obviously we would love to not see her go through surgery. But if so, we just want to get everything over and done with so she's not in pain anymore. I just feel so blessed that so far we've only been presented with fixable problems!