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

Blogger's Choice Awards

From time to time Gib and I check out the tracker on this blog to see how people find it. It is nice to know that we are mentioned by so many other blogs and it gives us a chance to check out blogs we otherwise would never have found. Well today I found that someone had come to our blog from The blogger's Choice awards web page. I followed the link and found that Ellie's blog has been nominated for "Best Blog of All Time", "Best Parenting Blog" and "Best Health Blog". It was very flattering, thank you to whoever nominated us.

And if you feel like voting for Ellie's blog just click on the link that is in the right hand column and vote. I think you have to sign up to vote, but it only takes a second. Yahoo Ellie's famous!

1 Year in Boston

I feel like Gib and I have a bunch of dates coming up that were big milestones last year. But today is probably one of the biggest. Not only is it my nephew's 17th birthday but, it was one year ago today that Gib and I followed Ellie's ambulance up the highway to Boston. If I had known then that in one year Ellie would be doing this well, I would not have been so scared. Below is a picture of my two favorite people, it's scary how much they look alike.
We chose to move Ellie's care to Children's Hospital Boston because they have a short bowel clinic. The idea of going somewhere that truly understood what we were dealing with was very comforting.

We also made the decision to come to Boston because my sister had offered us a place to stay. By this time we had spent over 2 weeks in the Ronald McDonald house, and were just about to loose our minds. The RMH gave us a room within walking distance of the Yale Medical, and that was great. But it was had to live there. It is hard enough to deal with you own emotions and confusion, but it is also very hard to watch other families do the same thing but in VERY different ways. We were really looking forward to staying with family, and enjoying their company and support

The move to Boston had the biggest impact on Ellie's health, because Boston equaled Omegaven. We know short gut children Ellie's age who have required multi-organ transplants to save their lives because they did not have access to Omegaven until it was too late. We came to Children's for the short bowel clinic, but now we will never leave because of Omegaven.

Sometimes I feel like Fresenius should hire me to sell their drug. I would like to stand outside every children's hospital with a banner and a bull horn to let all the parents know about Omegaven and what it can do. I would like to travel back in time to one year ago today to all those parents that we left in the NICU at Yale and convince them to come to Boston with us. It breaks my heart to think about where some of those kids must be today. We have said it time and time again, we credit Omegaven for saving our daughter's life. Thank you Kathy and thank you Dr. Puder.

So, now we have a beautiful healthy little girl. She doesn't eat as much as she should, but she doing well anyway. She is walking fully on her own now, and if I try to help she usually pushes my hand away. As much as we try to keep her clean her favorite place is still the dirty dog bed. She sneaks in there as frequently as she can, past almost any barrier that we erect. We know that she has managed to get in the bed by hearing her giggles and squeals. I found her in there the other day and had to take a picture before I yanked her out.

We are very happy here in Boston and are puzzled by what our life could have been like if Ellie was born with everything intact. We would have continued on as normal and we would have taken everything for granted. We never would have known how great it is to raise a child close to family. We never would have the chance to see how great our friends and families are in a time of crisis. We never would have gotten the chance to build new relationships and grow much closer with many members of our families. We never would have known how great a city Boston is and how much fun it is to explore Wellesley with a jogging stroller or baby backpack. And even though I miss my job, I never would have known how great it is to be able to spend everyday watching your child discover her world, the dog bed or the one kitchen cabinet that is filled with baby friendly Tupperware.

I can't help but think that maybe this was just meant to be.

The 'regular' Doctor

Now that Ellie is a year old it is time for another round of immunizations. Today we had a scheduled visit with Ellie's 'regular' pediatrician in Wellesley. Well, not the pediatrician but the Nurse Practitioner that works with the pediatrician.

Everything went fine, we got her her shots (3) but other than that, let's just say that it was educational.

It started with the nurse bringing us into to exam room and asking us very normally to strip Ellie to her diaper to be weighed. Abby and I rolled our eyes because we could tell the woman what Ellie weighed within 100 grams (3-4 ounces) and because we knew that the woman had no idea what was 'under the hood'.

I've got to hand it to her, she was quite calm when she saw the plumbing, but we could both tell that she was a bit alarmed by the whole thing. (by the way, we would have been 80 grams off on our estimate of her weight, which is 9.56 kg, 50th percentile)

The nurse practitioner was a similar case and honestly, I think that we overwhelmed her when she asked for information about Ellie. We overwhelmed her both in the depth of our answers as she struggled to take notes on what we told her and also in the fact that she had literally nothing to offer to us for advice about Ellie. But I guess she felt that we were there and that she needed to do something. Oh well.

One interesting thing we did learn is that Ellie has the enormous cranium that comes from both Abby and I. She is in the 50th percentile for weight, 75th for height and 97+ for head circumference!

Look at the big brain on Brogan! It's like an orange on a toothpick!

She told us that considering the huge melons on her folks (and grandparents) that she was probably fulfilling her genetic destiny but that we should maybe thing about having her thyroid checked. Another thing to think about..... we'll add that test to the next blood draw at Children's but didn't want to stick her again after three pokes today.

After that it was a day for enjoying the sun and letting the girl catch up on her outside time:


I am biased but man what a cute baby? These pictures really make us realize what a funny looking baby she was when she was very young.

Everyone was very nice to us and told us that she was beautiful.

Flattery helped.

I am flying solo tonight while Abby goes out for a friend's birthday. Ellie was out by 7:20 tonight with the post immunization Tylenol. It doesn't have the full narc effect that it used to have but it still does a good job.

I am still terrified to be doing everything by myself when Abby is out. Honestly terrified by the what ifs. It is all I can do to keep myself from checking on her every five minutes.

No kidding.

You would think that this would get easier but the doubt is still there.

Oh well better than not giving a shit.

To the park

The last two days have been beautiful here in Massachusetts. Yesterday we loaded up for a walk into town and today we loaded Ellie in the backpack to walk through the woods to the town park where Gus can swim. Yesterday's trip involved a trip to get new sun hat for Ellie. Last year's is way too small:
We are enjoying the sun and starting to make up for a lost summer of baby fun. Ellie loves the trips and sleeps like a rock when we get home which is great for Abby and I.

So does Gus after about 50 trips into the pond to get the ball:

Stairs, the next frontier

Ellie finally discovered the stairs yesterday and hasn't looked back yet (except for the picture)


We have tried very hard to keep her from climbing them until she had very good balance and yesterday we let her roam to the bottom of the stairs to see what she would do. Like a fish to water, this is honestly her first trip up the stairs:

http://video.google.com/videoplay?docid=2352361379159482556


Now the trouble is keeping her away from them. Last night she made a dozen trips up. this morning she started out with a few trips to warm up, and then throws a few in for fun along the way.

All of this activity caused Abby and I bit of distress yesterday evening when I picked her up and she was all sweaty. Sweaty body, sweaty little feet in her little girly shoes. Sweaty kids with central lines are a red flag for infection. Then we figured out that she was just sweaty from her workout. Gotta get her a headband.

She can't go down yet and tries to go head first which ends up with her 'ass over teakettle' as my dad says, but we will teach her soon enough.

It is neat to see her do these things even with all of the hardware on her belly. She slides along the stairs right over her ostomy bag without a hitch. A good onesie makes a big difference but I think that she doesn't know any different and wants to explore.

Feeding Experiments-

We are continuing to manipulate what Ellie eats and the drugs that she takes to boost what she absorbs in her small bowel and reduce what comes out of her ostomy. This is in hopes of getting her food to work for her and also to manage her hydration and electrolyte levels

The problem is that most days more comes out of her ostomy that she eats. This doesn’t make sense at the very basic level- what goes in should come out. The physiology of the upper part of her small bowel complicates things however when it puts a large amount of fluid into her bowel to help the food be digested. In a normal situation this fluid would then be absorbed by her large bowel. With an ostomy, most of the fluid goes into the bag and is lost which equals a net loss of fluid, salts and other chemicals.

We have added solid foods which are known to slow things down, tried drugs like immodium (which constipated her and slowed her daily poops down to every four days), and also manipulated her feeding rate. None of these have significantly decreased the amount of ostomy ‘output’. Some have increased it.

Which brings us back to the question of whether the food is the cause of the ostomy output or whether it is independent of the feedings.

Fortunately all signs are showing that Ellie’s hydration and electrolytes are within a good range. She is happy and pink skinned and drools a lot, all good signs. One possibly bad sign was that her weight went down over the last four days, the first time that that has happened other than surgery days it is only 150 grams but that is a big deal for us these days.

We are waiting on a urine test to give us the definitive answer about her ‘lytes but are only a bit worried in the meantime.

On goes the experiment in feeding the girl. Something makes me think that it will go on forever.

Literally.

Our Week

Gib was working in Mystic all last week so we didn't have much time to do any new posts, so sorry about the delay. Ellie and I did join Gib in Mystic for the first night, it was Ellie's first time in a hotel. She loved the hard bed that she could bounce around on. We had a good time and got to see some old friends. Ellie got some more time at the aquarium and I found out that she doesn't need me to get around. She was walking laps around the coral tank and having long conversations with the fish. Ellie is doing great and seems to be handling the decrease in PN without a hitch. Her birthday was also a big day in that we got to turn her car seat around.

Now that she can see you when you drive she likes to talk to you about her day. I can't understand anything she says, but it all sounds very important. She is also very helpful when Gib is doing the laundry,(yes Gib does all the laundry, now who's the saint?) she likes to wait until you have all the clothes folded and in the basket to go up stairs. Then she slowly unpacks the whole basket, making sure that nothing is folded when she is done.
All in all doing well. I have my first soccer game of the season tomorrow so I doubt that I will be doing well after that, but oh well. We were also hoping that Ellie would get to see her first Boston Marathon on Monday as it runs right by our house, but that little nor' easter that is on it's way might put a hitch in that plan. We will see.

Happy Birthday, Eleanor

Today is Ellie's first birthday.
Quite honestly, there was a time when neither Abby nor I thought that we would get here. There is a little trick that we learned in the NICU at Yale about hand washing that says to sing "Happy Birthday" while you was your hands and by the time you are done, you will have clean hands. This became a ritual for me that I hold onto today and every time I wash I think about getting Ellie to this goal.

Today, the Happy Birthday song has a much better meaning because we finally made it to a year. (LINK)

Along the way in the past year we have had some truly amazing experiences and seen some staggering amounts of other things. To get to a first birthday with a healthy short gut baby is a big milestone.

In the spirit of the Harpers Index, we have come up with a list of other numbers that we have experienced:

Short Gut Baby by the Numbers:

1- NICU Baptism- Yup. in the NICU among all of the other kids in their isolettes. Not the best choice, but it did the trick considering the crappy circumstances.

335- blog posts in the past year. That means that we have averaged .91 posts per day. I know that this isn’t enough for some but not a bad record.

247- Days that Ellie spent in the Hospital from the day she was born. That is 8 months and 2 days.

19- days that Ellie spent in the Intensive Care unit.

91-Distance, in miles, from Ledyard, CT to Wellesley, MA. This takes you down I-395, the longest loneliest road in the world.

11.62 Distance, in miles, from our house in Wellesley to Children’s. It can take 15 minutes or it can take 45. No matter we are a lot better off here than in CT.

157- days that Abby, Gus and I spent with Abby’s Sister and her family in Wayland. Family is family, but that was beyond the call of duty. We won’t ever be able to really thank them enough for that.

346 Claims made to Blue Cross for Ellie. Gotta love good blue cross. That is almost one a day. I guess that even the hospital billing folks take vacations for ten days each year. The pile of benefit statements is about a foot high.

~$1.8 million Total to date that has been covered. Gotta love good blue Cross.

$20 Amount that we have paid for her care. A visit to the 'regular' pediatrician and a visit to the Short Bowel Clinic before Ellie's MassHealth kicked in. Really gotta love good blue cross.

3 Inpatient Admissions

5 Trips to the Operating Room. The OR staff know us well. The others can't understand why we are so calm in the OR waiting room....

6- baby pictures of Ellie's small bowel. I bet you don't have those of your baby...

2 Central Line Infections. Knock on wood now. We are really lucky to have lasted this long with only two.

2 Central Lines. We are miraculously still working with number 2 right now.

5-The house record for most ostomy bag changes in one 24 hour period.

4 Surgeons

47- Omegaven Babies, so far.

5- Omegaven babies that are on it because of this blog, that we know of.......

6-9- months that the doctors told us that Ellie could be on PN without eating before liver damage would threaten her life.

0.1 Ellie's current bilirubin number.

7- seasons of Buffy-the Vampire Slayer that Abby watched while in the hospital.

6- weeks of Doxycycline for Gib’s Lyme Disease.

16- Days that Gib was out of commission with Lyme Disease. Abby is a saint. But seven seasons of Buffy will take you a long way, I guess.

750- milliliters of IV fluid that Ellie gets every night.

4 Red Sox Games Attended.

19- people who helped us get our house ready to sell and move to Massachusetts.

1 ½ Days our house was on the market before we got an offer above our asking price.

5 Pool noodles eaten by Gus, the WonderDog.

3- calls to Ellie's doctors at odd hours since we have been home.

2:25- (AM) The latest call to a doctor at home, who was surprisingly talkative considering the hour.

1 Pecan pie eaten by Gus, the WonderDog on Thanksgiving. Yes, we still call him the wonder dog. I guess that comes from the way he loves Ellie.

(617) 266-2928- The phone number for Brown Sugar Cafe, the best Thai in Boston.

45, 30, 56- The various lengths of Ellie’s bowel (in cm) reported after three successive surgeries. We like the last, longest one.

18- different drugs that Ellie has been on. That we can remember….

3- hours of bliss that we had before Ellie showed signs of Short Bowel.

Too Numerous To Count-

Belly x-rays

Meals in the Children’s café. Abby says Noodle Bowl day is still worth the trip.

Cups of too strong Au Bon Pain coffee.

Nights on the Children’s Chair/Bed

Words, notes, calls, meals, presents, emails, and other signs of support from our friends, family, neighbors, co-workers, bosses, and strangers.....

Zero- The amount of birthday cake that Gut Girl ate on her first birthday: (LINK)

Yes, if you haven't guessed, we celebrated her birthday on Sunday since I have to go to CT for work this week. Abby is coming down tonight to stay with me, though, so we will do presents and such tonight.

Happy Easter

Happy Easter.

We had a low-key day today after we got up and took Ellie (and her father) to their first ever Easter church service. It was good to get out and Ellie really enjoyed the people and the music. She was just great throughout the service.

The highlight, of course was the family photo opportunity:
Then this afternoon Abby's sister came over with her family and brought Ellie Easter eggs. She thought that the basket of eggs was very neat but wasn't so sure about the hopping bunny toy:

The Masters

The Masters Golf tournament is this weekend. That means that a year ago, by the sports calendar, our adventure began.

This is where we started. This is day zero before her first-ever surgery, notice no g-tube....

This is where we ended up:

One year ago, before the golf began, I got ready to cook pancakes and Jimmy Dean sausages. It is funny how the details stick around but I guess that the Breakfast of Champions and Pregnant Ladies has a way of staying in your mind.

I had just started cooking while Abby called the Obstetrician to see whether her symptoms-which included the words fluid and leaking and other words that make guys cringe- were a sign of labor.

Abby came in a few minutes later and told me to drop what I was doing and get ready to go to the hospital. The breakfast, incidentally, finally got cooked a few weeks later at the Ronald McDonald House in New Haven.

I ended up watching the Saturday third round from the hospital chair/bed in Rhode Island while Abby was in the early parts of labor. It was pleasant way to spend an afternoon even if it was a little boring for me since a slow labor is very slow.

Little did I know how many days and nights I would spend in a chair exactly like that one in the coming year.

Abby has much different memories of this part of the adventure and tells me that hearing the announcers on TV makes her want to barf. Since I have never felt contractions or had my cervix examined, I can only imagine what she was feeling as I watched the calm green golf on TV.

A long 24 hours later, I watched the Sunday fourth round in the hellish waiting room of the Yale NICU surrounded by dozens of people (link) while I waited for the surgeon to give us news and for Abby’s ambulance to get her to New Haven.

One very long year after that and I am home watching Tiger Woods do his thing from the friendly ass divot in my favorite rotten chair.

It is odd but it is the golf that really started me thinking about the entire last year. I knew that it would be coming but the golf was the trigger. With a milestone like a first birthday coming up I guess we will be thinking about the last year a lot in the coming days and remembering some of the really dark days that we had in the beginning.

Fortunately we have days like today to contrast against the crappy days.

One trip to Stride Rite today to buy real babygirl shoes:

does a lot to overcome the uncontrollable tears as my Mom forced me to eat breakfast in the lobby at Yale on day one.

Likewise, a weekend like we finally had last weekend makes up for the long string of days that I couldn’t physically talk to any of my siblings to explain what was going on and a period where my sister Kate and I avoided each other entirely for about a week because we both knew that we would be blubbering messes. Sitting on Kate's floor with Ellie a week ago made up for lots....

And even though reading a draft of this post made Abby and I cry, writing blog posts like this one makes up for the first one (link) that I couldn’t read to Abby aloud without sobbing in the hospital room at Yale.

As we learn of other short bowel families using this blog as a source to know a little bit about what to expect, I hope that it gives them a glimpse of the fantastic parts that go along with the crappy parts.

If we had known then that Ellie would be upstairs babbling in her sleep right now and the great progress that our little girl has made, those dark times wouldn’t have been nearly as tough.

Clinic Visit

Yesterday was Ellie's monthly clinic visit to see the Short Bowel Team at Children's.

We followed the advice of another trusted short bowel mom and scheduled the last appointment of the day, 4 PM hoping to get here late when people are done with their distractions and can deal with us. We're not sure of this approach but it was just as good as the other times and we didn't spend an entire day at the Hospital as we have for earlier clinic appointments.

They measured her height, weight and head circumference-9.45 kg, 21.70 pounds, 29 inches long, and a giant melon for a head that is filled with Omega-3 brains. In fact, her head is so big (how big is it?) Her head is so big that she needs to wear a size 2T hat to fit into it now. Abby and I both have big heads so she fits right in.

Then we spoke to the doctors. The surgeon, the GI doctor, and the TPN guru. They are very happy with her progress. So happy that they have peeled away another night on TPN from her week. We will now have her on just IV fluids two nights a week. We will need to separate them in the beginning to make sure we don't get a dip in her blood work but two nights of fluids is a lot easier than PN. They even told us that she had a reserve of nutrition. Imagine that, our girl has money in the bank. Or more appropriately fat in her thighs, but I will take it.

Since Ellie is treated by both the Short Bowel Program and her surgeon, it is funny to see the reactions of the same doctors that refused to do the ostomy procedure when they see Ellie's success with an ostomy. There is no skepticism or stern warnings now, just lots of success to go around as her bowel has come down in size, started to move food though, and she is up to round the clock feedings. Sometimes I want to ask them about their feelings on our choice of treatment but for now we will all feel good watching our very pale good sized baby who giggles and plays peek-a-boo with her mom in the hallway.

All signs are good. If we could just get an angry tooth to finally poke through, we would be in great shape. That will happen any day now.

A Resounding Success

This weekend’s trip was a success on all fronts. We took our PN show on the road, away from the comfort and familiarity of home and the security of the Route 9 to Children’s Parkway and came back without a hitch.

Making our trip even easier was the message from Ellie’s surgeon that we got when we asked him about going away for the weekend:

“Go to Maine – it’s not that far!

I have my cell phone on.

Any crisis and Maine Med is fine – I know the folks there.”

If that doesn’t make you feel bold, nothing will.

Apart from Ellie being exhausted and going to bed tonight at 6:45 she seems to be doing just fine. We will watch her very carefully for the next two or three days to make sure that her cousins didn’t give her a souvenir infection but it seems just fine for now. Sometimes it can take 72 hours for a bug to bloom in her. We felt her forehead a lot today. Lots of false alarms so far.

Abby and I even left Ellie with my family on Sunday and went to lunch for the very first time. We hadn't been away from her since December when the nurse came early one night and we went Christmas shopping.

We are already thinking about the next opportunity to head north how we can make it even easier the next time around and what we need to do to stay for more than one night.

The biggest trick is getting everyone up to speed on the little things that we do all day long as part of Ellie’s preventive care. Particularly interesting is how to teach my brother’s sons who are very precocious 3 and 4 year olds about infections and the need to wash their hands. On one hand, you need to tell them that they need to wash and why but on the other hand, you can’t tell them the full story for fear of scaring them and making Ellie and her tubes seem scary. I think that we reached a happy medium by making hand washing into a game for them.

If only we could Purell the little buggers from head to toe….

The other trick is adapting the routines that we have to a new arena. Simple things like changing an ostomy bag or even a diaper are just a bit more difficult without home court advantage. We are learning the new ways of doing things and fortunately, my sister has a beautiful brand new house that has lot of clean spaces for us to use.

Summer is coming and we have a whole lot of recreating to do to make up for last summer. We have a key to my sister’s house now to go along with the key to my brother’s boat.

It will be tough to stay away.