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!