Blood

I have never really had a problem with blood or other bodily fluids. That is a good thing where Gut Girl is concerned since any given day may give us poop, urine, blood, ostomy output, barf, spit and an assorted other bunch of liquids that we can't quite identify.

These all need to be found, cleaned up and thought about before we go on to the good parts of Ellie's day.

Stool, urine and ostomy output (think greenish milk) all get weighed and logged to make sure that neither too much or too little is coming out which could mean dehydration. Dehydration is very bad, even though we have extra IV bags to give her fluids.

Barf, even though it has been rare in the last few months, does make an appearance every now and then. If she barfs we have to think about what it was, what and how she ate, and what it means for her next feeding.

Blood only shows up every now and then. Most often it is around her G-tube which is always angry (like a hole in your belly should be) and sometimes it bleeds a little bit. It is never red blood and mostly shows up as a dark splotch on a dressing.

Her ostomy also bleeds red blood a bit when we change bags or if Ellie has been lying in her belly a lot. It is unnerving to see red blood anywhere on her but we both realize that her bowel is naturally red because of all of the tiny blood vessels that line it and sometimes they will bleed a bit. Last night's bag change caught her in the perfect combination of situations with her really mad (the ostomy will swell if she gets angry, like the Incredible Hulk) and after a day of playing on the floor. Because of this her ostomy bled a good bit. We cleaned it up, but it was a new experience in the long line of things that we do every day.

I've gotta go and change the cotton balls in her ostomy. Again.

Going for a walk

Ellie got a great cart filled with blocks for Christmas from my parents. Even more fun than the blocks is when she gets up behind the cart.

And walks across the room:

The video of the whole thing is at:

http://www.youtube.com/watch?v=fiFHkI03oUI

New videos of a happy little girl

I am finally getting the hang of the new camcorder and how to get the videos from there to here.

Here are two videos of Ellie playing motorboat with her rattle:

http://www.youtube.com/watch?v=8bP2Pi8Jh88

And giggling with her aunt on Christmas morning:

http://www.youtube.com/watch?v=BSD8w_b38PI

Snow!!!

To celebrate some falling snow and Ellie's poop this morning, we dressed her up in her winter duds and went for a walk.

She didn't know that the snow was any different than other days outside but it was good for us to get out and get some air.

We have spoken to the Short Gut folks at Chilren's and have added new foods to her buffet as well. We gave her a piece of apple in the mesh teether thingie and learned that tart Gala apples aren't such a good idea but sweet delicious apples are just right for babies:


We have also given her some Cheerios that work for motor skills as much as food. Gus loves to clean up the mess at her feet but we think that a few may have gone down the hatch. It is all trial and error here and we know that a round of constipation and/or an ostomy explosion is bound to happen, but for now it is good to be moving the train along.

Slow and steady on the homefront

Things are moving much more slowly since we have come home. We are settled into the daily routine and are streamlining our techniques to do Ellie maintenance on the fly. Other than learning the new routine, there is very little to report.

Ellie is starting to expand her diet and we offered her rice cereal a few days ago. We even think that some of it went down to her stomach and to her gut in addition to the bunch that ended up on her party dress.



Hopefully this hasn't tied things up below too much but we are on the poop watch again hoping for a dookie in the diaper since it has been a little while.

We got the go ahead to give her some Cheerios, too. We have been waiting for this for a long time and it is a glimpse of what other babies do at 8 months.

Christmas was great and we had a house full of family here to share Ellie's first Christmas with us. She is quite a ham and is learning to clap her hands in response to any round of applause that comes her way.

Merry Christmas!!

Field Trips

Today we went out on the town again. We had some errands to run and Ellie did just fine. She loves the car seat. After so many months without knowing that it existed she falls asleep before we hit the road, which is nice for longer trips.

We did a little bit of shopping with surprisingly few other shoppers and Abby and I got out first experience with double takes at Ellie's tubes by the public. We both got over it quickly. We could give a shit what housewives from Brookline think about Gut Girl and her tubes.

When we got home Abby and Ellie went over to the neighbor's house this afternoon to say hello. Yes it is weird to type those words, but that is the way things go. Their little girl came home with a G-tube from the hospital a few years back and Abby wanted to meet the kids.

And show off Gut Girl, too.

So Abby dressed her up for meeting people and off they went. I went grocery shopping like a good domestic.

When I got home this is the baby that greeted me.














We are having great fun with our girl.

A minor and a major Festivus miracle

Today we got good news at home and from Children's.

At home, a minor Festivus miracle- Ellie's line worked perfectly when we too her off of her PN this morning. We were all set for a day at Children's with our bag packed for a possible extended stay but the saline flush went in, the blood came out, and we are in business. The TPA took a little bit longer than usual to work but it looks like we are good for now.

At Children's, a more significant Festivus miracle. There is a little boy that we know who got on Omegaven much later than Ellie has had the serious issues with his liver that come with the old lipid source (See August 26). The Omegaven just didn't do its miracles with him. His bilirubin is through the roof, his other organs aren't doing well and he is just plain old sick.

Yesterday they listed him in the organ donation program at Children's and just fours hours later, organs were available for his very rare blood type. A very special Festivus gift and we are hopeful that his surgery goes well this afternoon. And evening. And tomorrow morning (it takes more than 16 hours to do the transplant).

It is very tough for Abby and I to see what could have been. If we hadn't stumbled into Children's and met Dr. Puder and Kathy Gura who do the work on Omegaven. We would be in a much different situation right now and making that same decision about a transplant. Instead, because of nothing that we did other than coming to Boston, our girl is upstairs asleep in her crib doing what babies are supposed to do.


Hopefully that will be the case for our friends soon.

Clinic visit

Today was Ellie’s second visit to the outpatient Short Bowel Clinic at Children’s.

Even though we are out the door, they keep good tabs on her. We have been in touch with her doctors and nurses by phone about minor things but clinic is a chance for an exam and a discussion about Ellie’s progress and where to go from here.

At one time we had four doctors, Abby, Ellie and me in one small exam room. I think that it is because she is so cute that doctors like to come and see her, but I could be biased.

Her progress has been good so far. So good, in fact, that we don’t need to bring her back for a regularly scheduled visit for a month.

That is for a scheduled visit. We certainly will be back sooner for unscheduled things. Such is life with a kid that has three holes in her belly.

After a long day with a tired girl, some highlights on today’s news:

She has grown steadily in her time at home. She now weighs 7.43 kg which means that she has gained 20 grams a day, a good growth rate for a PN kid. Too fast is bad and too slow is bad. 20 grams a day is good.

Her feeding is up to around 200 ml per day. She was at just over 100 when we left Children’s. It has taken some adjustment to get Ellie to eat in the new environment but she takes bottles every few hours during the day and does pretty well with them. This is a good step for her, but a long way from the current goal that we learned today is 1200 ml per day. We have a long way to go but have come a long way from the 24 ml days that were not that long ago. I think that measuring things in percentages is the way to go, sort of like the math that I do in my head on the treadmill…. Right now we are at 16 percent feeds.

Her ‘Ins’ (things going into her mouth or G-tube) and her ‘Outs’ (things coming out the other end) are in good balance. This was a big concern when she got her ostomy but it looks like she is doing well with that so far and her electrolytes are in good balance.

One bad thing was today’s blood work. The problem wasn’t in her blood, which we hope is as good as always, but getting the blood. Usually we draw it from her central line, without needing a needle to ‘stick’ her. Today, for the second time in three weeks, her central line wouldn’t draw blood. Things go in fine but can’t draw out. This could mean a small clot is at the end, or that the placement of the end has shifted.

We treated it with another round of TPA (Drain-o for IV lines) but had no luck even after three hours of soaking. Tomorrow we talk to Children’s about what to do next and whether another round of TPA is in order or something more complicated.

We are crossing our fingers that the line can stay.

A new central line is one thing I don’t want for Christmas this year.

This is the best toy ever!!!

Ellie and Gus are getting along fantastically. Her is very gentle with her and puts up with every little exploration of his collar and fur that she can give him. This afternoon she climbed on top of him and fell on his butt. HE simply got up and moved.

Most of the day he sleeps next to her as she sits on the floor. It is really great to have everyone together and not have to corral Gus.

We don't trust him at all and never turn our back on him because he is the first dog and we know that he likes to be the king.

We give him lots of love to go along with the attention that Ellie gets. As we do procedures with her upstairs he sits by the gate that separates him from the clean(er) room upstairs where we do med stuff and waits for us. It is very cute and we are very lucky that he is such a good sport.

Field trips

Ellie is only on TPN for 14 hours a day these days. Which means that every day at 8 AM she is free as a bird until 6 PM when we need to reconnect her.

That means we can go on field trips and in the last week we have been to the doctor's office, the hospital, the mall, and Babies R' Us.

Today we needed a Christmas tree and off we went to the tree selling place.














Ellie preferred to ride inside of my coat with my hat on:



















We have a beautiful tree and will decorate it bit by bit as we have time in the coming days.

Ellie digs the lights. Almost as much as she digs Gus, the dog, who is being an angel around her.

Care and maintenance

I guess it is what you would expect with an infant but we have very long days these days.

In addition to all of the normal baby stuff that we do, we have the added duties to take care of all of Ellie's hardware every day.

Her G-tube is leaky from having a tube that was too tall in there for a week or so. It opened up the beautiful little hole (like a pierced ear) and now the fluid leaks around it and oaks the dressings and/or her clothes or ostomy. It comes with the territory and when it leaks it needs to be cleaned and redressed. Kst days this happens two or three times.

Her ostomy is full of cotton balls to absorb the liquid that comes out. To keep it from over saturating, it needs changing every few hours. Tweezers and new balls. Feed her and get ready to replace them.....

Finally, her central line dressing is a constant source of anxiety for us. That is the high stakes gamble for us and we have been fortunate so far that the clear window/dressing has stayed in place this week. We put on our masks last night for the weekly dressing change and sweated our way through our first dressing change. A success.

In short, if we aren't doing something, we are cleaning up from it, getting ready for the next round or carefully calculating what went in, what came out (we weigh everything) and seeing whether it it within acceptable limits. It gets easier, and we can do the easy stuff without much thought but the more complicated stuff is more taxing on us.

One of the big tasks of the day is setting up her TPN. We are getting good at this each night. In the beginning it took a hour to get it set up and running. Today Abby pulled it off in under 20 minutes from start to hook up. Lots of parts to connect and pumps to set up, but we get it done. The toughest part is to remember to take the PN out of the fridge four hours in advance of her hook up. It needs to be room temperature or it will chill her when it goes in. That would be bad.

When Abby resigned her job at the Aquarium, we said that Ellie would be a full-time job. That is turning out to be a fact and then some.

we are hopeful that daytime home nursing will come on line in January and will be here to lend a hand. It would be nice to have a relief pitcher for the hard stuff every now and then.

But it is all worth it for our girl who smiles and sticks her tongue out through almost all of it, except the central line dressing changes. Those aren't fun for anyone.

Settling in to normal

We have been home for three days now and are getting into the routine of being at home. In some ways it is similar to the routine of the hospital with pumps, and IV lines and feedings, but in every other way it is entirely different.

First off, we are home.

Our couch.


















Our floor.


















Our bed.























Very simply life at home is great.

And terrifying. We no longer have the great nurses of 8 West a few steps away whenever we push the little red button, or the entire floor in our room if we push the BIG RED EMERGENCY BUTTON that thankfully we never had to push but it was nice to know it was there.

We now do everything for Ellie inlcuding setting up her IV's, feeding her, weighing what goes in or out. IT took some getting used to and adjustmen to the routine but it is getting easier everytime we do it.

It is also exhausting. Both physically becaue it starts early and ends late, and mentally because we both know that the safety net is gone and that we are out here alone until we can get help on the phone.

We have a great nurse who spends the night with us and that makes things easier and lets us sleep during the scary overnight times when alarms are most troubling.

Gus the wonderdog returns this weekend. That will up the ante, but we miss him and it will be great to have our family together finally.

Ellie went for her first outpatient 'clinic' today and everything is going well. the doctors are pleased, she keeps growing and we have taken two hours off of her PN each day. she is down to 14 hours a day now. Lots of free time to play without the pumps.

TV Star

Hi all, in the excitement of the past few days we almost forgot to mention that Ellie will be on Boston CBS channel 4.

They are doing "A Day of Giving" and Ellie is one of the kids that they taped for the promo.

I'm not sure how much she will be on but keep an eye out for her.

The video is on the CBS-4 website now: http://cbs4boston.com/video/?cid=66

Or try this: http://cbs4boston.com/video/?id=26830@wbz.dayport.com

Home at Last

The Eagle has landed.

At just after 12 today, Abby moonwalked our girl out the front door for real.

http://www.youtube.com/watch?v=DxQmeK00q2s

We loaded her into the car and drove down the road. Eight moths late and with a girl that looked around a little as we went, but we are out the door.













And home:

We are settling in and have two sets of nurses coming this afternoon. one to set up Ellie's TPN and one as her overnight nurse.

Abby is exhausted, but we are home. Finally.

Last Night

Hello, Abby here. Well, Gib was nice and let me have the last night here in the hospital. That is very fitting because I made him take the first night. When they showed us our room here at Children’s, it dawned on me that now it was going to be just us watching her all the time, no more NICU nurse 5 feet from her bed. Well, I panicked and begged Gib to take the first night. He stepped up and took the first and now I have the last.

As Gib mentioned yes, I have been nesting. It is actually the second time that I have nested. One week before Ellie was born, with the help of my friend Jess, I put the finishing touches on our new nursery. Then 5 months later I had to pack that unused nursery into boxes where it stayed until this week. As I unpacked I had to shake off the feeling that I might be tempting fate once again. But, here we are and everything is still on track to finally having a baby in our nursery.

Gib and I are fully aware that even though we may be going home with Ellie tomorrow we will defiantly be back. And just because we are going home now, it does not mean that we will be home for Christmas. We know that we have another long stay ahead of us when Ellie’s intestines are reconnected, many months from now, but we also know there may be many shorter visits peppered in between.

Ellie and I spent the end of the afternoon and this evening being visited by staff saying goodbye and getting many hugs. The staff here on 8 West have become so much a part of our lives that they really feel like part of our family. Ellie loves the staff and the attention that they give her so much that Gib and I fear that she will be bored with just the two of us. But in reality she is going to be so amazed with all the new things that she gets to see that we hope there will be no chance of boredom.

I think the person Ellie will miss the most is the kind woman named Anna that cleans our room everyday. She and Ellie have a special relationship, so much so that if we need Ellie to smile for a picture all we have to do is ask her where Anna is.

Ellie is doing very well and making Gib and I feel better and better about her future. Just to give you all an idea of how well Ellie is doing, (please knock on wood before reading this) she has gone from 4 different medications everyday to get her intestines to work to none. She is drinking 40-45 cc bottles (that is an ounce and a half to the layman) every two hours. She is walking laps around her crib and is off the TPN for 8 hours a day. We were hoping she would be off the TPN for 12 hours a day at discharge but Ellie can not maintain her potassium for more than 8 hours. We just have to wait for her to get bigger before we can decrease her hours of TPN again.

So I’m now getting ready to go to bed feeling very good about tomorrow, just the idea of being able to take Ellie on a walk in our neighborhood or playing with her in our bed all morning makes the past 8 months completely worthwhile. Just about the time I start feeling optimistic I have to remind myself that this is a marathon not a sprint. We could be the home stretch or more likely only at the midpoint. It is a delicate balance to stay realistic without sounding pessimistic. But it is where Gib and I must balance to not loose our minds in this whole journey.

Here’s to tomorrow.

T-minus 1 Day

We are in the final stages of ending this round in the hospital and starting up where we should have begun a little less than 8 months ago. You have a baby, you spend a few days in the hospital and you go home, scared shitless and not knowing what to do with this new baby.

We have the scared shitless part down. On the other hand, I guess that we are lucky that we know what we are doing with Ellie, how she acts and what to expect, at least for now. Taking home an 8 month old is a lot easier than taking home a newborn.

We have nurses all lined up to meet us when we get home tomorrow and they will be with us for the overnights for the first two weeks at least. Somehow issues in the middle of the night are scarier than during the day and having a nurse on hand will make the transition a lot easier. We will see how much help we need and adjust after the first two weeks.

Having a nurse in our house would have seemed foreign before our time at Children's, but in the past few months the nurses have become our friends and we will really miss them. We will miss them for the great care that they gave Ellie and also for the way that they treated us and how they love Ellie like we do. I am afraid that there may be tears on both sides as we leave tomorrow and taking Gut Girl out to see the world.

But we will be back.

That is a certainty since Ellie has a hole in her belly that needs to go away and also because we have learned that short gut kids are back in the hospital fairly regularly.

Just a fact of life. Sort of like Cheers- the kids are bigger and doing different tricks, but everyone knows their name.

So now we wait and hope that we don't have any hiccups.

The plan is to get the works moving in the AM and hopefully we will be out the door by lunchtime.

Have you ever seen one of those mother birds?

You know the ones that carry huge sticks in their beaks back to their nests. Well that's Abby these days, walking around in circles, arranging branches and making the nest for our girl.

All systems are go to bring her home on Monday. We have found a nursing service that has nurses for us, the medical companies that supply TPN, formula, and medical supplies (three separate companies) are all set for our arrival and most of what is left is waiting for the day to come. Oh, and practicing my moonwalking.

That isn't to say that things have been dull or that we haven't had doubts that this could just be a big old fake out.

For example, Ellie's central line started acting up yesterday for no apparent reason. we usually can give her IV fluids and also draw blood fro her line to avoid a needle stick. Well yesterday afternoon, the blood just wouldn't come out. The saline flush would go in, but nothing would come out no matter how we moved her or contorted her.

Ah, crap, says Gib. The line must be shot or kinked inside. I had visions of going to radiology, seeing that it was shot and signing up for another few weeks at the Longwood Suites.

Well, it turns out that sometimes little clots form in the line and work like a flap that allows fluid in but not out. No big deal. In then end, we hit her line with some IV Drain-O today and everything is clear. But it was another in the line of things that remind us that everything is subject to change with Gut Girl.

Add into that a suggestion that a dot on her belly scar looked like MRSA (Methicillin-Resistant Staph Aureus) a really nasty bug that lives in hospitals. Yup, the possible delays keep coming. No it wasn't MRSA, but it made us both nauseous to think about it.

On the homefront, Abby has made a nice nest for us to plunk Ellie in whenever she gets here. The crib is in place, the table to do medical stuff is set and all we need is a bouncing, giggling 8 month old to make it lots of fun.

Yup, 8 months old today:



Another cool, strange thing happened tonight. I learned that this little blog has been nominated as one of the ten finalists for the Best Medical/Health Issues Blog for the The 2006 Weblog Awards!

No kidding.

I know I don't have a prayer of competing with the professional blogs, but if anyone wants to vote, voting goes on through the 15th at this link: http://2006.weblogawards.org/2006/12/best_medical_health_issues_blog.php .

It is cool just to be nominated. And I get use this fancy logo:



Although I think that things got a little thin this fall, I am glad that I didn't have more to write about.

Dull days are bad for reading, but are good for us.

Baby steps toward the door

We are still shooting for Monday departure from the Children's Bed and Breakfast, but there are a lot of little things that we are doing before we get to walk out the door.

Like doing a hospital required car seat test. 90 minutes in the seat while hooked up to all the monitors, and of course she passed with flying colors.

We are learning the finer points of IV use and other good tricks as well and even are talking about what we are going to do in the first weeks of 'clinic' when we come in for the day each Thursday.

There is even talk of starting real food beyond formula.

I can only imagine my girl with a mouthful of rice cereal....

Monday Update

No big news today.

Other than the fact that we have set a discharge date and are working towards moonwalking out the door a week from today, (knock on wood).

Yes, December 11th.

Abby met with the pediatrician in Wellesley this AM and we are set with a runny nose/ immunization/developmental doctor to go along with the surgical team.

The scariest thing is that we have an appointment for next week to bring Ellie to the pediatrician OUTSIDE OF THE HOSPITAL!!!!!

Cross those fingers, cross those toes and remember that a setback could mean Valentine's Day.

Such is life with Gut Girl.

But all things are pointing towards fresh air and a very scary car ride next Monday. it almost makes up for the empty car ride when we left yale without a baby in April.

Wait. No it doesn't. That really sucked.

it is going to take a pallet to get all of our stuff out of there.....

Baby steps, Baby steps.

New from Mattell in time for Christmas

It's Ostomy Otto.

Little Otto is a patient in the hospital. He wears a gown like yours.....


Otto has an ostomy just like you......



Help Otto change his ostomy bag.....
No, I am not making this up.

Ellie got one of these the other day complete with a functioning ostomy bag. Brilliant to make something scary and sometimes gross to little kids into a toy.

Steps in the right direction

Ellie's has moved out of the post op phase an right into the improvement phase this week.

• She has started her feeds again and instead of feeding her through her G-tube, we are giving her as much as we can through her mouth. This was tough for the first while but with some persistence and a little bit of sucrose, we were able to convince her that bottles are good and that the full feeling her belly is a very good thing. She now sucks down respectable sized bottles (20 ml) every hour or two and squawks whe the bottle is done. Good signs.
• Her ostomy continues to work as planned. The food goes in her mouth and shortly afterward it flows out of her ostomy after being digested in her stomach and absorbed in her small bowel.
• The outflow from her ostomy is just the right amount and hasn't gone out of control like it does with some kids. She is right on track with her output.
  

The doctors are very happy.

Which leads to the best news so far: if all goes well and barring any delays because of infections, etc we could be going home on schedule with the 4-6 week post op release

We have started the train rolling and are in basic training again with the teaching pros here at Children's to learn all fo the ins and outs of Short Gut care that we haven't picked up yet. Evn with home nursing, we are the primary care givers for Ellie and need to know all of the procedures. tomorrow we start on IV pumps.

Cautiously optimistic is the way we are moving and we always want to be a week late going home than a week ealry.

If anyone mentions the holiday at the end of next month or a particular Bing Crosby song, so help me............

Look, Gramma, long sleeves!!!

Three steps in the continuum of Children's

We got an interesting call yesterday from a friend of ours in california who called to tell us that a friend of hers had just had a baby in RI, been transferred to Brown (Women and Infants) and was on the way to Boston (sound familiar???). It turns out that the baby has problems with his heart and digestive system and needed the hlp of Children's where they have specialized programs for the specific abnormalities that the baby was born with. We made contact with them last night and it turns out that they are on the adjoining wing of the hospital. Same floor, same elevator, just go straight instead of turning right to come to see Ellie. small world. Abby has spent some time with them today giving them the lay of the land here and explaining all of the great things that the hospital has done for us over the months that we have been here. Hopefully they will only be here for a few weeks but just in case we are setting them up with all of the tools for being hospital parents.

On the other end of this, we met a mother tonight whose three year old son has a short bowel that is significantly shorter than Ellie's. He is three, eats food, grows and plays. With a super-short gut. Had an ostomy. Lived in the hospital......Lots of things in common. His mother spent some time with us this afternoon explaining what a shock it will be to go home and that it is sometimes equal to the shock of being here.

Hopefully we will see that in the coming months.

It is nice to share information and stories and have them shred with us. It lets us know that we are not alone in this marathon and that there are lots of parents out there who are dealing with situations that are similar to ours, and also some that are much worse.

We see kids every single day that make us grateful that Ellie only has to deal with short gut.

Knock on wood now.

p.s. She continues her stellar recovery. She now walks around her crib and turns both corners at the end.

Hi!

Ellie has been moving towards words for the last week or so with solid consonants and a repeated 'na, na, na" when she is grumpy.

Yesterday afternoon her words had a good H to them and this morning, she looked at Abby and clear as bell said "hi!".

Which is great fun and makes sense since that is the word that she hears from the stream of nurses who stop by to say hello all day.












Ellie's recovery is going very smoothly so far. She is off of heavy drugs and is weaning off of tylenol as well. To look at her you would never know that anything happened. She is standing up, playing, rolling onto her belly and is just very, very happy these days.

http://www.youtube.com/watch?v=lAi9vUgXr4s

Her ostomy is working as we had hoped- liquid flows from it very freely meaning that there is very little pressure on her bowel and also meaning that her bowel is moving things through.

Three Days Post Op

Ellie continues on her amazing recovery from surgery. Infants recover much more quickly from all sorts of surgery than adults and she is no exception. Last night N-G (Nasal-Gastric) tube was removed along with her foley catheter which brings us back to the same number of tubes that we had to begin with plus a heart rate monitor.

She is handling her ostomy very well and has been playing today in her crib and on the floor and even sits up with what must be a very sore belly. The nurses tell us that pain doesn't limit baby's activities so they don't favor an injury and she is right up and at 'em today.

As a bonus, her ostomy is functioning properly already and fluid is coming out regularly, which is the goal of the ostomy.

She is still riding the morphine but has started to taper off of it overall. Her dose was reduced by a third today and we will keep her on enough to be comfortable before transitioning onto tylenol some time soon.

We will think about feeding her in a few days.

A video from Thanksgiving afternoon: http://www.youtube.com/watch?v=664ZlufIKQA

Happy Thanksgiving

Today is Thanksgiving. A day that really never had all that much meaning for me.

Yeah, yeah, I’m thankful for this and that and that I’m healthy and happy but those were always big, abstract things to give thanks for.

This year is different. I have lots to be thankful this year.

A new baby. Have you seen my girl? I’m biased, but man what a great baby, short gut and all.

A spectacular wife. Who else would I have in this foxhole with me? She is fantastic, beautiful, and smart. And she makes me laugh every day. What more could I ask for?

Our family. We have learned not to talk too much around our families because anything that we need gets taken care of. From clothing with snaps to trashy magazines for the waiting room, to mindless talks about boats with my brother when things start to suck, to a place to stay for 5 months, they have been there. I don’t know how we would have gotten this far without them. We are very thankful for that.

Children’s Hospital. Children’s hospital was always an abstract thing to me growing up in New England. I always knew it was there, but never knew what it was or what it did that separated it from other hospitals that treat kids. Well I know now that it is a truly special place for little kids and their families. I wish that they would toot their horn a little bit more so people would know what it was before they need it.

Nurses. I am convinced that they love her as much as we do. We couldn’t ask for a better group of dedicated talented people than the nurses here on the floor. They have moved on from being Ellie’s caregivers and have become our friends, as well.

Omegaven. The thing that we are most thankful for, Omegaven has changed the rules for how Ellie has been treated. If Ellie were very sick with liver failure right now we would be in a much different situation than we are right now.

Doctors. We are very thankful for Ellie’s great doctors. Sometimes we feel sorry for their families when they spend so much time caring for our family. Weekends, holidays, it doesn’t matter. Ellie’s surgeon was visiting last night at 8 PM, the night before Thanksgiving. We love the attention, but feel guilty at the same time.

My bosses. Throughout our time with Ellie, my bosses have been incredibly understanding. All they ask is how Ellie is and what they can do besides sending good healing karma our way. I am very thankful for this as we see the many families that juggle work and baby here in the hospital. Working from the hospital has been a real help for us.

Short Gut Parents. When we learned of Ellie’s condition, we felt alone and like lightning struck. Come to find out that there are lots of families out there with babies like Ellie. They have shared ideas with us along the way that have helped immensely and let us know that we are not alone with this Short gut thing. The communications with parents whose babies are further along in the process is especially comforting. Seeing light at the end of the tunnel makes the bumps in the tunnel no so bad.

Blue Cross. Not one medical bill so far. Not one argument. It’s like they saw the TV commercial that says ‘they are the insurance company, it’s their job to pay the bills.”

Comments on a blog. This blog experiment that started as a way to avoid having to attach pictures to emails has turned into an entirely different thing since April. We have met people and their babies and even shared information that has gotten two babies onto Omegaven. The comments from friends and family have been great and have picked us up in bad times and made us laugh all the way along.

Getting better all the time

Ellie is continuing to do better by the hour.

She is a lot more awake and alert today than yesterday and we almost got a smile from her beofre lunch. Now she is pretty well sacked out and resting, which is just what she needs to be doing.

This afternoon she came off the epidural which numbed her from her chest to her belly button during and after sugery. This removed one whole set of tubes from her tangle of tubes and wires. Hopefully her foley catheter will come out later today to further pare down the bird's nest and get us closer to the way we were pre surgery.

It turns out that much of our pain issue on Monday night was because the epidural worked for the incision site, but not the site of her new ostomy. Epidurals are inexact and assumed to migrate over a certain band of her spine. The migration wasn't quite even and left her lower belly without numbing.

The anesthesiologist took this quite personally and was really bent out of shape about letting her feel any pain. He visited late yesterday to check on her and tell us how sorry he was. In the age of litigation all over the place whenever things don't go perfectly, it meant a lot to hear his concern and sincere apology.

We have caught up with the pain and the morphine has been well established . This has helped the pain and she is very comfortable as we keep up on the meds.

All is going as it should. The swelling of her ostomy (which looks a lot like a puffy rose) has gone down significantly and we are encouraged by her recovery.

Baby steps.

Ah, morphine, sweet nectar of the opiate gods

At 4:30 this mroning we finally decided that enough was enough, our little girl had seen enough hurt for a while, and started up the morphine drip. Very slowly at first, but then building to a full dose, she is now on the magic juice and, for the most part of pretty comfortable and sleeping the day away.

She is much bigger than the last time she had problems with opiates and this time she seems to be doing much better. Her heart rate and breathing are solid and she is only a little bit dopey. I wish we could give her more dope right now but we are being cautious because of her history. She is on a steady drip of morphine with a button to push for more every ten minutes or so. The trick is to get ahead of it and stay ahead of it to stay away from the really bad pain.

In a few days things should settle down and we can think about weaning her off of the heavy drugs.

Right now we want her happy, quiet and dopey.

Hopefully this is the low point in the recovery from this surgery and we can have better days from here.

In the never dull world of Ellie, though, you just never know.

One handed, left-handed Juggling

Pain sucks.

Seeing your baby in honest pain really sucks. Not fussiness or fall down and bump your head pain, but rock your world, everything hurts PAIN.

Not knowing what to do about it and not being able to use the gold standard answer is like juggling one handed, left-handed. You want to use your other hand to make things easier, but you can’t.

Ellie has had an adverse reaction to morphine in the past (scary low heart rates, low respiration, etc) so we are at a considerable disadvantage in the pain management department. She can have it but we need watch her very, very carefully. Most babies come out of anesthesia and are given a dose of morphine to send them on their way for the first few days post-op. It works as a pain killer and a sedative, letting the baby sleep soundly while their body recovers from the shock of having their belly opened up, their guts emptied, moved around cut and sewn together.

Ellie can’t ride the morphine wave so the pros have to get creative. Tonight we had to see Ellie in honest pain for the first time in a long while tonight after she came upstairs from the recovery room. On the handy little baby pain measurement card that the nurses carry with them, she was off the charts and we couldn’t figure out why or how to stop it.

A little of this, a little of that and she is good for 10 minutes, just long enough for us to believe that she is comfortable and that we could take a deep breath. Then it ramps up again and we scramble to adjust.

A long night. And I remember the times that I felt lucky over the past few months that my baby wasn’t the one down the hall screaming in pain. Now she is that kid.

A little bit of morphine would be nice right now.

Surgery Update

Ellie is out of surgery, awake and alert. She is groggy as you might expect after 6 hours under anesthesia but she is up and Abby is holding her.

Ellie went to the surgical floor at 11 this morning. At noon she went in to the OR. Abby and I adjourned to my parents hotel room across the street.

At 3:30 the surgeon called us to give us the update and we went back to the hospital.

What he found:

Ellie’s bowel is longer than we had been told in the past. In June, we were told that she had around 30 cm of small bowel, which is very ‘critically’ short. Today’s surgeon measured her bowel and told us that over all she had 56 cm of bowel that absorbs nutrients, and only 10 cm is lazy with limited motility. This is really good news for us.

She had two obvious tightenings in her small bowel that had dilated portions above them. The surgeon opened these and we hope that it will allow the dilated parts to come down.

Her bowel is still very large, and in some places it is close to 4 cm (a little less than 2 inches) across. Fortunately, the surgeon emptied her bowel contents and saw that the bowel was moving well when it was allowed to be empty. This is a good sign.

At 4 PM, the surgeon went back in to replumb her bowel and we have just gotten a call at 5 PM to tell us that things are moving along well and expected to be done a little after 6.

At 6:30 we got the final report from the surgeona nd anesthesiologist who told us that things are good and that she is recovering well.

At 7:30 we went in to see her and she is doing well with the usual complement of wires, tubes and other assorted equipment that will be pared down in the next few days. A tube in the nose, an EKG monitor, a foley catheter in her diaper.

And one whopping big old nasty ostomy in her belly. Red scary and puffy, it is the size of a fifty cent piece and right now it sticks out about half an inch into the ostomy bag. we are very glad that we waited to do this with a big baby instead of a tiny one. That ostomy would have been huge a few months ago. Now it seems to be normal.

We will be back in Ellie’s room tonight after some time in the PACU (Post Anesthetic Care Unit). we managed to get ourselves one of Ellie's A-team nurses for the night and she only has Ellie as her overnight assignment.

We will have videos and pictures (internal and external) to share later on.

After a lull of activity in the land of Ellie and this blog, let the next chapter begin. Hopefully it will end with a triumpant exit as we moonwalk out the door.

T-minus 48 hours

Hey, baby. Nice tooth*

We got word last night that Ellie is the third 'case' or operation of the day on Monday, barring any emergencies or urgent surgeries that bump us from our slot. She should go in mid-morning and they tell us that it could take 4-6 hours. Lots of waiting. I'm going to save the Sunday crossword for Monday.

No great news today, she is very happy and dances up a storm while she watches the parade of nurses go by our door, blissfully unaware of what is coming her way on Monday. I guess that is a good thing- no anxiety for her, just doing her baby thing and then whammo, she goes to sleep and feels crappy when she wakes up.

She has become more aware of her hospital equipment in the last week. The tubes and bright plastic clamps are very similar to her bright plastic toys and we have watched her chew her IV lines a few times.

To fight this we have made a tube cozy for her lines that covers them with fabric. So far she hasn't discovered what is inside and leaves it alone.

Another marvelous invention that came out of our necessity. Oh what good fun that parents of kids without short gut miss.







* The number one pick up line in the bars of Rangeley, Maine.

Reactions to the WSJ Omegaven Story

I found two interesting posts on other blogs tonight about the omegaven article:

http://parentingsolved.typepad.com/parenting_solved/2006/11/short_gut_big_n.html

http://www.pointoflaw.com/archives/003186.php


I am glad that others see the strong arm ideas of the company as being inappropriate. I am working on a letter to the Journal. I will post what I submit.

X Marks the spot

Ellie's pre-op preparation has been under way for a few days now and will keep building until Monday's surgery. She has come off of formula (the supply of milk ended a little while ago), her meds are pared down to the minimum and we are taking baseline readings of her heart rate, heart function, and breathing to measure against after she comes out of anesthesia. We think that she may have a pulse that is on the slow end of the range and that her dips may be normal.



Today the pre-op folks came down and marked the spot on her belly where the ostomy will go as well. Abby told me tonight that seeing the spot made Monday's long awaited surgery very real for her. It has been a while since her last 'real' surgery that didn't take out or replace a central line and we are remembering what it is like to go through that. I rode down the elevator this morning with a couple whose child was in for surgery and they were waiting and talking about having nothing to do for the next 4 or 6 hours. I almost barfed thinking about it and the fact that we will be there Monday.

We both understand that to take a step forward we need to take a step back, but having such a great, happy kid is making that tough.

How can we take this smiling baby and make her stop smiling?
But then I remember what our nurse told Ellie a while ago:

"Ellie, you need to go home. The kindergarten bus doesn't stop at Children's."

Which reminds me that even though Ellie is very happy in the hospital (and presently keeping her mom up as she sings the night away), it isn't where she belongs. Eventually, one of these days (or weeks or months) she belongs at home, riding the dog and sitting on the lawn.

So we rest up for a few days and then start this wagon train a rollin'.

I have taken the week off from work (man are my bosses great!!) and we will hunker down and take care of the girl.

A new video: http://www.youtube.com/watch?v=PGnqbaso6pU

Short Gut goes to the Street

Today's Wall Street Journal had a long article about the relationship between Ellie's doctors here at children's and the pharmaceutical company that makes Omegaven, the IV fat source that is letting her grow without the liver complications of other IV fats. Unfortunately, Ellie didn't ake it into the story, but soem of the other kids that we know that have benefitted from the stuff were featured. I guess that we aren't far enough along the road to being fixed.

It seems that a complication may be the company itself that doesn't like the way the doctors are using the product.

I hope that the limited information about the fat will convince the pharm folks at Fresenius to keep selling the Omegaven to us.

Just a little nerve wracking to think that we might have to go back to the stone age or search for another omega-3 source for her PN.

The activist side of me thinks that it would be a good fight to take on the drug company. Imagine the news story of 30 sick yellow babies coming from the transplant unit to ask the billion dollar company to let them live. ....

I'd prefer that it doesn't get to that and that the company keeps selling its drug.

A Whole new set of tricks

What a difference a few days make.

I left on Tuesday morning for a conference in Orlando. 25,000 SCUBA divers and the ocean conservation folks. Same church, different pew. Well worth the trip.

When I left, Ellie was cute and happy and I had a good time before I had to run off to the airport.

When I got back there today, my girl was a totally different kid. Somehow her voice had migrated from her throat (gurgle, gurgle, squeal) to the front of her mouth where they are now dah, dah, dah, bah bah bah. And they come in series that sound like sentences. This girl has some things to say. Very close to the teacher on Charlie Brown. This is very good for Abby and I who have been concerned that her voice was still in her throat because her mouth doesn't get the workout that it should.

The nurses also told us that she points to the chair when we are gone. This is a heartbreaker for us and made leaving tonight very hard. No, Mom, you don't need to come and sit with her. She is asleep and happy as can be.


She is also learning how to play peek a boo and is very excited every time that you reappear (as long as you don't appear too soon and scare the shit out of her, literally). Abby took a nice video of her and it is up on YouTube: http://www.youtube.com/watch?v=uqaT8dGTJG4

7 Months Old Today

Well Gib is in Orlando this week and I'm sorry but his computer is the one that can handle the camera. So, you will just have to get a written update and we will post pictures as soon as he gets back. That being said, Ellie is really cute right now. Yesterday was a big day, she cut her first tooth. She has been chewing on everything and yesterday she chewed on my finger and the tooth was unmistakable.

I also had a team meeting yesterday with all of her doctors and nurses to get a better handle on her progress and where we are going from here. Ellie's small intestines have very little motility, so food just pools in them for hours at a time and then very slowly moves on to the large intestine. Because the food spends such a long time hanging out it is a great place for bacteria and yeast to grow. Most people do not have any bacteria or yeast in their stomach or small intestine, it all lives in your large intestine. Because Ellie is missing the valve between the small and the large intestine the bacteria from her large intestine travels up through her small intestine and into her stomach.

So because of this overgrowth her intestines are irritated and inflamed. This has made it so that drugs that we used to treat the overgrowth were able to transfer from her intestines to her blood stream. Because patients should not be able to absorb the drugs through their intestines the amount that is put in the intestines is more than you would give if you were injecting the drug. Almost all the drugs that are used to treat overgrowth have listed in their drug safety info that they do not transfer from intestines to blood. But Ellie apparently is the exception to that rule. And this is how we had the kidney damage a few weeks ago.

Almost all antibiotics leave the body through the kidneys so when she absorbed too much Gentomyacin it went through her kidneys and overwhelmed them. So her kidneys kinda went into shock and only did about 40% of their job. So it has been almost a month since we discovered the problem and her kidneys seen to be recovering nicely. Now because Ellie has potential to absorb other drugs we are limited to the antibiotics and anti-yeast drugs that leave the body through feces. That leaves us with only 2 antibiotics and 1 anti-yeast.

If we stayed with our current treatment of just managing her overgrowth with drugs then very quickly the bugs in her belly would be come resistant to the very limited selection of drugs that we have. Eventually, we would loose the ability to treat her overgrowth. So, now we have to look at fixing the cause of the overgrowth, which is her lack of motility. Two months ago we were looking at surgery as one of her options and now it is her only option. So to surgery we go.

November 20, Ellie will have surgery to create a temporary ostomy. She and her bowels will go through 5 days of prep before the surgery and we have been told that there is potential for this surgery to very long. Our surgeon may have repair or clean up from previous surgeries. We are meeting with the anesthesia team now so that we can hopefully avoid a trip to the ICU after surgery like last time. Gib and I are ready for big day, we have one week to try to get everything done that we need to before the big day. It is strange to say but I am excited about this surgery, it is a big step forward and I'm really ready for one of those.

After surgery we will have (if everything goes well) 4-6 weeks of recovery and learning how to care for her new ostomy. If you time out 4-6 weeks there is potential for us to be home for that big holiday in December, but Gib and I have decided not to talk about it. We will celebrate whereever we end up. Ellie will have the ostomy for many months until the dilation comes down or we decide that it is not working. Then she will go in for another surgery to have the intestines reconnected.

So that is where we are now. Ellie is on the floor at my feet right now playing on her new play mat. She looks great, and along with a new tooth she has new sounds. She has learned how to put her tongue to use and is now saying NANANANANA and this morning I heard GAGAGAGA. Yahoo! No delay in speech! The NANANAANA is starting to sound like and be used like NO. I am in so much trouble down the road if that is her first word. She is also huge! She weighs 15.7 pounds and is very long. She is in 6-9 month clothes right now and many of the onesies are getting too tight. Okay, I better go play with my girl she is about to start sucking on my toes. I promise pictures this weekend!

Play Time

Ellie is spending a lot more time these days playing which is lots of fun for her and for us. We have gotten a play mat for the floor in her room so we can play here instead of going to the common playroom that may not be as clean as we think it is. $19.99 well spent.

She is also getting lots of time with Physical Therapy and they tell us that she is on target or ahead of the milestones for her age. Again I say: Delayed My Ass.

Here is picture of her on he exercise ball in he PT playroom from yesterday. PT is much more fun for her than it used to be.

Trick or Treat

Trick or treating in the hospital is a bigger deal than I had expected. Everyone gets out and makes some sort of a visit. In wheelchairs, strollers or somehwere in between there was a true parade of costumed kids going through the hospital this morning.

Ellie started out her morning as a loster with her mom the chef. They told us that if we carried her around in a pot that they would have to call child services, but we thought about it.


She was joined by her monkey friend Christian and his Mom:
After a little while, the little lobster started to get cooked and we switched costumes.

A fisherman and the catch of the day:


Catch of the day, fully cooked: