Purple Kappa

One Month Post-Op

I know, this is a terrible picture. She's not angry, the flash caught her in the face and she was too busy with Important Things to consent to a second--I'd interrupted her fun long enough. I did get her permission to post this picture online.

The incision is pretty much healed and her activity level is back to normal--she's running around and playing, riding her bike--although she will from time to time ask to be carried up the stairs because "you know the doctor said I should take it easy on the stairs!". We have one more appointment in a couple of weeks before we get the okay for public pools--the doctor wants to be sure she's absolutely healed and in no danger of infection. Both girls are impatiently waiting for the all clear even though the pools around here haven't even opened just yet.

If anyone happens to run across this blog because of doing a search on omphaloceles, please feel free to leave a comment or ask any questions--I'll do my best to answer them. When Ivy was first diagnosed, most of the information we found online seemed pretty grim, it would have been nice to read a story about a baby that went on to have very few health problems. I don't mind sharing any of our experiences with parents who are going through the same thing.

Ivy's Home!

I can't express enough gratitude for all your comments. I told Ivy she was famous, that people all over the world were wishing her luck and hoping she felt better soon. She thought perhaps since she's so well-known now, maybe there'd be a movie about her. "At the theatre, on television and on DVD."

She's doing well, she isn't even taking any pain medication--she was refusing it at the hospital because she hated the taste so they figured they'd see how she tolerated things and she's been fine. The hardest part is getting her to slow down--she wanted to check out the new library and have her celebratory dinner out tonight, halfway through dinner we had to pack things up because her stomach started to hurt. She's a little unsteady walking around but that's to be expected. And she's very, very happy to be home.

Slow Progress

We're getting somewhere, slowly for sure but it's progress. Ivy got her gn tube out today so the gagging feeling that makes her think she's going to throw up is gone. She's on a new pain medication that works really well, she's been moving around the bed a little bit on her own. Unfortunately Monday I decided she needed to be moved for her own good into a more comfortable position, I did it without her permission and it hurt and now she's suspicious and angry over any attempts to get her to move. She yelled at me today "for crying out loud, it's my body!. Yep, it is. It's good to see her personality back, even if it's mad at me. One of the hardest things was seeing her lying there, and barely wanting to speak with a hoarse, squeaky voice.

She still can't eat anything yet, her intestines aren't moving enough but she's missing food. I don't think she's having actual physical hunger pains, but she wants to eat. We've started a list of foods she wants when the doctor gives the okay--brownies, drumsticks (the ice cream cone kind), jellybeans, sausage, hot dog, eggs and granola bars. Unfortunately, her first meal will probably be oh-so-tasty broth. But after that--look out.

Brian's got night duty tonight. He's so much better with thinking up fun things to do with her. He's the one who came up with the list of foods, they made a cat puppet together out of tissue paper and a pipe cleaner (chenille stem? Guess they aren't called pipe cleaners any more?). I'm better at reading books and giving foot rubs. I guess together we're a pretty good team.

New Day

Some food and a good night's sleep helped remarkably. If Brian is able to get more time off, I think we'll alternate nights rather than me pushing myself to do two in a row, that's what did me in. And not eating very well--I was trying to eat as little as possible, because buying all our meals is getting expensive. I'm going to make up some stuff to take in--there is a refrigerator and a microwave on the ward. Thank you again, all of you, those who commented and even those who didn't because I know sometimes it's hard to find the right thing to say, or you feel others have already said it, or it's a difficult subject for you. There is an activity room for the kids, and among other things there was a shelf of books. I was trying to find something to read and picked up a copy of Pollyanna Grows Up--figured at least I could find out what happened to her. So, here's my list of Glad things:

• we live very close to the hospital, about a 15-20 minute drive depending on traffic, so we can visit easily.
• Brian has a very flexible job where taking time off is fairly easy
• None of this is life-threatening, and Ivy's condition isn't potentially fatal. I can't imagine doing this sort of thing knowing that eventually my child is probably going to die anyway and I'm just making her life comfortable for now.

Miranda is staying with her grandpa for the day, and I have things to get ready before I'm off to the hospital.

Quick Update

I'm home for tonight while Brian takes a turn at the hospital, which is good because I'm about ready to drop from exhaustion. Ivy's surgery went well, but unfortunately they weren't able to do it laparoscopically after all--she's got a 6 inch incision in her belly, making for a longer and more painful recovery. She has IV's in each arm, an epidural for pain, a tube going up her nose and down into her stomach to drain it and a catheter. She's really just miserable and so am I. I'm hoping Saturday and Sunday are the worst of it--once they start hearing activity in her bowels, they can remove the tube up her nose (a gn tube I think?) which I think will really help, it makes her feel as though she's going to gag and hurts her throat.

I really appreciate all the kind words and well wishes you guys have left, really I do. Reading them after spending the weekend at the hospital brightened my evening. I will update again when I can, probably in a few more days.

Getting Ready

Tomorrow's the big day. We are due at the hospital at 8:30AM.

There's a new nightgown

A kitty friend to bring along--there's one for Miranda as well since I'm very conscious of the potential for her to feel overlooked

And a box with scissors, markers, glue and other fun things, as well as books for reading aloud.

When Ivy was in the NICU for her first surgery, I would visit her but really didn't know what to do, I couldn't hold her and she was too young to talk to. So I would read books. I started with little kid picture books, and then moved on to chapter books. She heard all of the Harry Potter books while lying in the NICU and reading them took my mind of my own anxiety.

I'm going to have limited, if any computer access while at the hospital, so may not be able to update until early next week, but I promise to get some sort of information up as soon as possible.

I spent the morning at the hospital while Ivy completed the last of her tests--a glucose breathe test to see if there is bacteria in her intestines. This involved getting up very early, not eating any breakfast (no food or water after midnight for Ivy, I snuck a cup of coffee and a banana before I woke her up), drinking a glass of sugary warm orange soda and then breathing into a tube every fifteen minutes for two hours. She did much better than I expected--I was really dreading this one, it helped that they had a collection of Pokemon videos she could watch. The results were negative--which in a way is bad news, as it means she does need surgery now. She's actually rather excited about staying at the hospital, although after seeing this video about going in for surgery that La Mammina posted in a blog entry about her own daughter's upcoming hospital visit, she's decided she'd like to fly to Australia for her surgery. Unfortunately we'll be staying here in Cleveland but I think I've managed to convince her that the Cleveland Clinic is every bit as cool as Sydney Children's Hospital.

After a busy morning it was nice to come home to this package

Two back issues of Cotton Friend and some decorative tape--Little Red Riding Hood, hedgehogs, robots and cars. There is a super duper sale going on at Superbuzzy and things are going fast, especially the back issues of magazines. After missing out on the Spring 2007 of Cotton Friend, I quickly placed an order for these two. I'll post more pictures later--I'm trying to convince Ivy that she (meaning me) needs a nap.

Etsy Gift Guide

I made it into the Etsy Gift Guide for baby--Etsy staff picks items to be included in the gift guides. I suspect finally taking some halfway decent pictures helped quite a bit in getting my item selected. It's the bonnet, top and bloomer set in the third row.

Yesterday we received the rather sobering news that it's highly likely Ivy will need surgery. We'd been relieved that all her tests weren't showing abnormalities, other than the expected organ malrotation. But the pediatric surgeon is concerned she is experiencing adhesions due to her intestines not sitting in the abdomen properly--very common for people with an omphalocele. He'd like to perform a surgery that will arrange the intestines (that sounds like a strange phrase) in  a better position. The adhesions can develop into something quite serious, leading to portions of the GI tract needing to be removed, so it's important to get it taken care of. He's hoping to be able to use laparoscopic surgery to minimize her recovery, especially since her abdominal muscles are already compromised by the surgery she had at birth

I'm actually feeling pretty calm about this. I have an  tendency to get distraught and anxious over little things--but they are generally things I feel I have no control over, and no way of knowing what's going to happen. With this, there's a pretty clear cut plan to follow, we just need to do it. She has one more test at the end of April and depending on the results, she'll have the surgery some time after that.