Clinics and Coasts

On Thursday Gib and I took Ellie in for a clinic appointment with the Short Bowel Clinic at CHB for the first time in a month and a half. It went well, Ellie is gaining weight again and has grown another half inch. Even with her pause in weight gain last month she is still in the 50% for weight and 70% for height. They were very pleased with her progress, but would like to see her continue gaining. They also recognize that with her current energy level she needs more calories. So we increased the concentration of her milk formula which increases the calorie content. She went from 20 calories per ounce to 25 calories per ounce. She is still on PN for 6 nights a week with one night off when she get just D5 mixed with half normal saline. But we didn't change anything with her PN just her milk.
It was a great visit because most of the doctors were away at a conference so we got to spend more time with the TPN guru and the nutritionist. They were very helpful and we got so many questions answered. The nutritionist gave us some great pointers as to what new foods we can try and how to make them ourselves so that we don't have to buy everything.Here is a picture just to remind you all whose daughter this is. Check out that hair. Gib got it wet after feeding her to clean off any food that found its way up there. Then on Friday we headed north to spend the weekend in Maine. We arrived on Friday and stayed until Tuesday morning. Last time we made the trek up there we decided that we needed to stay for more than one night to make the trip worth it, and four nights was great!

The weather was very hot for Thursday, Friday here in Mass, and we thought that it would be cooler in Maine. But it was just as hot if not worse. Ellie handles the heat well, but she did start to get a bit dehydrated from sweating so much. So we gave a call to Apria(our supply company) and they got a few bags of hydration fluids out to us. After a good hit of the new fluids she was good to go for the whole weekend. Hooking Ellie up for extra fluids is new territory for us, but it was something that we were told we may have to do. Especially in the hot summer months.The trip to Maine was a huge success, we all had a good time playing with the cousins, exploring the Maine coast and spending time with family and friends.It was Ellie's first time seeing the ocean, and first time at the beach. She even managed to eat a few pieces of sand just to keep things interesting.Ellie and Gus got to see their first parade and Ellie enjoyed her first gram cracker. Ok, so really all she did was gum it, but she seemed to like it. Gib's sister and mother even babysat for a few hours for us so that Gib and I could sneak out to get some new clothes and enjoy a quick meal out. Gib and I forgot how nice life was near the water, maybe on the next visit we can get Ellie out on the boat.

Basic Training

We have just over 3 weeks to go until we walk for Children's on the 10th of June.We have gotten a lot of support for our from all over the country including people that we have never met outside of blog land. One friend even sent a note to her co-workers asking for donations. It is really neat to see.We have also gotten one volunteer to join TEAM ELLIE on the 10th but would love to see more friends and family out with us.
We are realizing that our goal is ambitious but we need more help. We would love to see lots of folks join us in our tiny effort to give back to Children's to help the next round of kids who need the next great thing, like Omegaven, that is in the works somewhere near the 300 Longwood Bed and Breakfast. Something really cool that will keep babies alive or allow them to walk, talk, see or hear.

We have been getting her out for walks a lot these days in her tutu and in the stroller to enjoy the sunny weather we are finally having.
Ellie isn't a big fan of riding and watching the scenery go by and prefers to get out and walk.

We are also going on these walks to get her walking but also to get used to riding in the stroller, which will be a key for our day-long adventure. Enjoy the video below, this is how Ellie prefers to go on walks.

To donate to TEAM ELLIE just click on the Children's hospital Icon in the top right corner of this blog. Thanks for your help!

After last week's events we have had a very slow series of days with Ellie. Her repaired central line is holding up well and is just a little bit longer than the old one, which makes it a bit more difficult to handle but it is not unmanageable.

The biggest effect of last week's fun was a reminder to Abby and I that at any moment, the alarm could go off and we could be going to Children's in any one of a number of levels of bad connected to her 'plumbing'. IF a central line breaks and the clamp isn't holding, it is the same as an open vein. The reality is that we know parents who have found their kids with open central lines and lot of blood during the course of a normal day. Sobering thoughts, but it is the reality of having the line in place. That kind of thing is the big motivation to get Ellie eating and get rid of that time bomb.

It took last week's minor fiasco to remind us of this. After so many weeks of good days it is easy to foregt about what could be.

These horror stories are all what if's, however. Right now Ellie is doing amazingly well.


Her feeds are up to 25 ml per hour round the clock for a total every day of close to 600 ml. Seeing her pump at 600 as we reset the total at midnight is especially gratifying for us after all of those months when she was lucky to break 50 for the day.

Another good sign is that her ostomy output is decreasing which tells us that maybe she is processing a good bunch of the food or that a big proportion is finding its way through the connection into her colon. This is the way that her ostomy was designed- as her small bowel comes down in size more food will go down than out.

For the last few days she has started to poop regularly for us. Combine that with round the clock urine and it seems that more food is going into her colon. We like that. Her poor sore bum doesn't but we are working on that.

Today I had Ellie here for the afternoon while Abby did some errands. It was great fun to play with her when she so happy.

Getting her to take a nap was a challenge but I finally managed just in time for my lunch to end and I got on my conference call with 30 seconds to spare, eating as I listened to the folks in DC talk about fish.

The videos are about 45 minutes apart as she moved towards a nap. I guess the video camera and dad laughing are not the best ingredients to get her to sleep. I couldn't help myself.

But Ellie, the doll is supposed to.....

My mother and father gave Ellie a fancy baby stroller for her birthday when we went to Maine last month. She does very well pushing it across the room and even plays with the doll every once in a while.

Yesterday she discovered that the fancy stoller would hold her as well:A good thing that it is strudy and wooden to hold the girl and her doll:
Yesterday was our first consultation with the occupational therapist to talk about Ellie's development and her skills to eat and explore food. The therapist gave us some advice about trying new foods for texture and how to expand Ellie's diet beyond elecare and cheerios. She even gave Ellie some chunks of avocado to play with. Mmmmm oily and green.

Since that meeting we have added some chunkier food to her diet and made eating a more formal activity in the high chair instead of the on-the-go grazing that she knows. So far it has worked and I even got a round of applause for the chunky orchard fruit medley tonight, even though she was still on the floor:

GO TEAM ELLIE!!

Mark your calendars! June 10th at 11am TEAM ELLIE is walking in a 2 mile fundraising walk to benefit Children's Hospital.
Gib, Ellie and I will be there to thank Children's hospital for everything it has done and continues to do for Ellie. We truly will never be able to thank all those involved enough, but this is a good step. Our family benefited not only from their excellent medical care but also from their many financial programs that they have in place to help parents. So, please help us in our fundraising efforts for Children's, so that they can do the same for other families.

You can support us in two ways:

1. Give money in the name of TEAM ELLIE. It is easy! Just click on the small Children's Hospital logo at the top right of the blog. This will take you to the teams website. Any amount small or large will help us get to our goal of 5,000.00 dollars.
2. Join TEAM ELLIE!! If you want to spend some quality time with the rock star herself and enjoy some nice summer weather, please join us as we stroll along the Charles. It is easy to do. Just click on the small Children's hospital logo in the top right corner of the blog. This will take you to the TEAM ELLIE web page. And then click on "Join the Team." Anyone and everyone is welcome to join us, Ellie would love the company.
   

The walk starts and finishes at the famous Hatch Shell with the main section of the walk along the along the scenic Charles river. There is also a 7 mile walk for those of you that are feeling ambitious.
So please help support us as we try to give back to Children's hospital.

But do they call me Gib the Oddsmaker?

So much for my radiology or oddsmaking skills.

Even though the outside of Ellie's central line slid a good bit when she yanked it this morning, the inside stayed right where it should be.

This let Dr. Jennings repair the line without replacing it. A very simple procedure to splice in a new end- a metal straw inside the ends of the two tubes, a plastic sleeve outside and a whole lot of silicone caulk to hold it all together.

In 24 hours the caulk will be set and we will have a repaired line that is a few inches longer than the original.

The scariest parts of the day: seeing the flexibility of silicone as Ellie yanked her tube 18 inches away from her chest and seeing Dr. Jennings take a pair of scissors to her sacred central line that we have protected religiously since August.

I guess if you have the ability to install a new one, cutting an old one isn't that big a of a deal. Everything is relative.

The bottom line is that Ellie is back in her crib sleeping after avoiding a nap all day. To be honest Abby and I were the most upset about the possibility of having our bubbly little girl back on pain meds and anesthesia.

'Oh, Shit!'

Just when I thought that things were getting dull and that I didn't have anything to write about nd exactly 24 hours after Abby joked with me whether I wanted the Bertucci's coupons from the Sunday Globe, those were the words that I heard from Ellie’s room this morning as Abby and our visiting nurse did their twice weekly check up on Ellie’s plumbing.

Oh, shit isn’t the best thing to hear as they do sterile procedures and when Abby yelled down the stairs to get the ‘go bag’ ready. I knew as I bounded up the stairs that one of two things had happened: either her line was broken or her ostomy had prolapsed again. Both earn us a complimentary trip to 300 Longwood Avenue.

The first had happened. Sort of. While doing another procedure, Ellie had grabbed hold of her central line and pulled on it. Hard. This separated the thin interior tube from the beefier exterior tube and the whole thing had slipped about 2 inches out. Since the other end of the line is in a major blood vessel near her heart, we knew that the placement of the business end was important. Since the meds and TPN that go in are very concentrated it needs to be placed correctly.

Abby and the nurse finished up and got Ellie ready to go while I packed three bags of essentials, called the hospital, and called in sick. At just after 10 this morning we were rolling towards Boston.

One of the funny things about Abby and I and our limited experience is that instead of worrying or having any anxiety about the issue, we were wagering about which floors we would visit, in what order and ultimately whether we would be spending the night. The current odds at 1:23 PM is 70/30 in favor of a surgical replacement of her line and a night here in Boston. We have been told that repairs can be made to the line but it is well out of place and probably needs to be replaced. I am not a radiologist, however, so my opinion means jack squat.

Other than that, we have been spot on the mark about where and who we would go and thanks to a call from Dr. Jennings, we managed to skip 3-4 steps in the ER and come directly to his office, which is great.

Gus is manning the homefront for us while we are here. I hope that the house makes it through the day. If I know my dog he hasn’t left the couch.

More to come as we figure it out.

Spring time exercise

The day Gib put Gus on Elecare

We had another fun filled weekend with Gut Girl with only minor technical difficulties.

This morning Ellie and I went with Abby to watch Abby play soccer in the women's league. We left Abby at the game 30 minutes before it started and Ellie and I went to coffee and donuts before the game started. There is just something about going to Dunkin' Donuts with your baby on a Sunday morning that made me feel really good. Maybe it was Ellie snuggling in to be shy from the woman behind me or maybe it was the fact that I was finally there with all of the other families getting crappy breakfast.

Whatever it was it was very nice. It was even better to wheel Gut Girl and the wonder dog across the field to watch the games that I watched with just Gus last summer. Letting Abby show Ellie off to the women on her team who had only heard about her problems over the last year was very cool, too.

Ellie's new feeding strategy is working well and today we added some very well blended Dad-made oatmeal to the mix of high fiber fruits and cereals. So far things have worked very well for her with ostomy outputs (liquid into the bag) decreasing and the amount of food that travels through her colon increasing. This gets us more traditional poops and the occasional 'ass-polsion' of poop down the leg and in the bed.

Just like regular parents.

Today's minor technicalities led us to our first ever change of a g-tube without a nurse to help. A g-tube is an ingenious little device. A $1400 ingenious device, but still ingenious. ah, Blue Cross....

It is a silicone tube with a donut shaped balloon built around it. The tube goes into the hole in Ellie's stomach and the balloon gets inflated with a syringe full of water to hold it in and seal it against the inside of her stomach.

Empty

Inflated (food goes through the tube in the middle of the balloon)

When it gets old after a month, the balloon doesn't hold water and the balloon won't seal, which lets stomach fluid come out the hole and run down her belly. Besides letting stomach touch her her tender skin, the fluid makes her ostomy bag fall off.

Today we replaced our third ostomy in three days and knew we had to replace the g-tube. This was nerve wracking for us because we hadn't done it without a nurse but it was surprisingly simple. Deflate the old one, pull it out , pop the new one in, hold it in place and re-inflate with clean water.

It worked just that easily. The old one, besides being gross and smelly from living in Gut Girl's belly, was leaky and wouldn't keep a seal. We hope the new one works better.

The other technicality came when I decided to make Elecare formula to fill Ellie's pump this afternoon. Just like very evening, I added the powder to the pop top canister to make 20 ounces of formula and shook it. In our living room as I watched the Red Sox.

Vigorously.

Blammo!

The top opened and the formula went everywhere. I mean everywhere. I went for distance and got it on the floor, the couch, the lamp, the wall, the table, the dog, the laundry and the ceiling. It looked like a very sticky Jackson Pollock in white. Fortunately, Labradors like sugary stuff and Gus helped me out by cleaning up most of the mess. We will see how well his GI tract likes elemental formula. He still has Elecare crusted on his fur.

I guess we can file this under regular dad stuff, but it was funny anyway. Even for Abby who hates sticky formula and was well within her rights to give me hell for being so stupid. She didn't and laughed harder than I did.

Lesson learned. Make formula in the kitchen.

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.

Tutu's and Polka Dots

When Ellie was born, my sister, Kate gave her a little girl tutu which has been much too big for Ellie. Until yesterday when we took it off the lampshade and put it on the girl.

Fortunately we did it at the end of the day when she is raring to go and showed off for us with her new frilly accessory:

http://www.youtube.com/watch?v=p6fdZGKhb2k