Wednesday, May 02, 2007

Ellie's Birthday Cha-cha

I started my birthday with a baby that decided to magically sleep until 7:20am and then Gib let me sleep in even later by getting up with her and Gus. Usually one of us gets up with Ellie and the other feeds and walks Gus. I have been running in the morning with Gus, but it was such a treat to be able to sleep in that I couldn't resist. Sorry Gus.

This birthday was much better than last years, last year Ellie needed her first midnight blood transfusion. This year we spent the day pretty much like every other day, Chasing Ellie. Ellie and I did have one field trip. We went into Boston to Children's hospital to get a weight and length.

The Short Bowel clinic is over booked for the next clinic, so means we wouldn't be able to get in for another four weeks. Ellie was last seen a month ago, and to wait another month is just more that I am ok with. So,I took her in for a quick weight and length just to see how she did over the past month with one less night of PN. The good news is that she grew a half inch, bad news is that, as I suspected and as our nurse's scale was telling us, she is not gaining weight. The picture below is Ellie showing off her big mouth.
I made an appointment for tomorrow morning with her surgeon and called the PN Doctor when we got home and added another night of PN back on. She went from 5 nights of PN to 6 nights of PN. We were very excited for the decrease in PN nights last month, but about that same time Ellie started walking by herself and going up and down the stairs about a million times a day. So, right when she really could have used the extra calories, we took them away. Now we will give them back, give her a month or so and try it again.

It's the short gut cha-cha; two steps forward, one step back and repeat. With the scheduling issues that the Short bowel clinic is having it sounds like we will have Dr. Jennings manage Ellie's care and just check in with the clinic every once and awhile. That works fine with us and they all seem to have a pretty good working relationship so I know Ellie's info will get to everyone it needs to.

When we first walked into clinic I mentioned who we were and why we were there, and from behind me I hear, "Ellie Brogan? I know Ellie brogan." It was a nice mother with a very cute baby, that was there to see Dr. Puder. She found out about Omegaven from this blog, contacted Dr Puder, traveled across the country, got on Omegaven, and now her daughter is doing much better. The little girl still had some of the yellow skin color that indicates past liver damage, but she was a active, happy, smiling baby, not the normal PN baby. Thanks Omegaven.

I also found out from Dr. Puder that Yale medical, where Ellie was for her first two weeks, is starting to use Omegaven on their short gut babies. Wow, what a difference a year makes, when we were there no one had even heard of Omegaven, and now it is the standard. Great news. Below is Ellie with her book collection, she loves to just sit there and read or pull all the books off the shelves.
We spent my birthday night at my sister's house, for some great Japanese food and birthday fruit tart, my favorite. We have had a birthday bonanza around here, and my sister has been a great birthday host for all of them. Ellie got to play with her cousins and run, yes run, around in their back yard.

We are trying to prep this week for another trip to Maine, but we are aiming for two nights this time. This will be the first time we have done two nights away from home. All it really means is that we have to pack that much more stuff, but it also means we get to relax a bit more when we are there. It takes forever to pack for the trip and forever to pack again once we are there, it will be nice to have a day to relax in between. Oh yeah, and Maine means we have baby sitters! Oooh the possibilities.

Well that is about all that has been going on here, I do have to end with a few more pictures. The first is Ellie's room with... polka dots! I really wanted to put polka dots on Ellie's walls since Ellie never got to see the ones Jess and I painted in her first nursery. But as this is a rental house and I didn't think that our landlord would like me painting on the walls. Then I found stickers for walls, and as you can see I went a bit wild.
And last but not least, another picture of my girl in her tutu. Those of you that knew me as a child I sure were not surprised to see my daughter in a tutu. I can only hope that she will wear hers for as many years as I wore mine.Please look at the previous post for some great video of her before bed antics.


kate said...

The tutu goes really well with the "Superhero" t-shirt. Quite an ensemble.

Anonymous said...

Yay, Ellie's coming to Maine!!! (sorry, couldn't quite contain that...) See you soon. And bring the tutu!

mbrogan said...

Is this a Hat Trick from Maine?
We're excited that Ellie may be coming to Maine again. Bring your long johns, it's cold.
It certainly makes sense that she'd need more calories now that she's running!