A quick down and back

Last night Abby and I went home to Connecticut for the night to visit the garden (which is growing in spite of our neglect and with sdome of Heather's TLC), mow the lawn (which had gone to seed already), and go to a friend's going away party.

It was odd going down there and we knew that no matter how low-key we were that the going away party would become a welcome home party of sorts for us since we hadn't seen most of the aquarium folks in a long time except for the few of the hardy folks who made the trip to New Haven or Boston.

It also reminded me of how many people read this blog and made me realize that I have been slacking in my postings from inside the loop.

The first time that you get cheers as we enter a room is odd if it has never happened to you, but it was great to see everyone and see the creative onesies that they fabricated for Gut-Girl. I will post photos of these after they get laundered and go into her rotation of handmade clothes.

We ran back at 6 AM today for a fix of Ellie time and met with Ellie's doctors who gave us an update on her situation (no change) and where we are going in the coming weeks-which is looking like another surgery to open up her tight intestines.





How we do this is up in the air and we are still mulling the options but have come to think that the new STEP procedure is not the best for her at this point.

Wide Awake this afternoon

Abby and I spent the night away from the hospital for the first time in a week last night. We came back at lunchtime today and had a good afternoon with Ellie until Abby left around 3 when I took Ellie out for a status if the hospital- some time on the grass in the garden, a trip to get an early dinner and then some laps around the floor.

A sunny day in the hospital garden is a great thing. They get everyone, and I mean everyone, out to get some sun if they can, including having two orferlies wheel a full sized hopital bed out so a teenaged girl could see the sun. Really great to see that kind of thing.

We got back around 5 and she was wide awake until just shy of 8 this evening when I finally got her to go to sleep.

Hopefully she willbe better on the gas tonight since they have essentially left her G-tube open for the night with a small bottle to catch any liquid.

Anyway the picture from this afternoon shows Eleanor at her widest awake.

Pay no attention to the creepy vein on her nose. 

A possible new approach

Ellie's blood chemistry continues to move slowly in the wrong direction. This is to be expected if her menhaden treatment is following the pattern that other kids have followed but it has started Ellie's doctors talking about the possibility of surgery to correct the slow parts of her intestine, which continues to dilate with the pressure of fluid moving through but building up at the site of her repaired intestine (the anastomosis).

This talk of surgery is unsettling for Abby and I for a lot of reasons. First off, Ellie is not in bad shape right now so suregery is not an emergency for her. we understand the value of preparing us for the possibility of surgery in the future if it is necessary but we don't like to think baout it as a when situation. We understand that her bowel is not recivering as well as it could but time is a good thing and at this point we have some time.

The second reson the talk of surgery is unsettling is that the discussion of surgery has been limited to the new Serial Transverse Enteroplasty (STEP) surgery that was pioneered by Ellie's surgeon here at Children's to effectively legnthen her bowel. Our reservation about this surgery is that is is so new and hasn't been done on young indfants very often and so far the surgeons have only shown us limited information about the results of the STEP suregeries and these results have focused on esoteric results such as percentages of nutrition required by TPN, or growth curves assocuated with post STEP kids. There is very little information about complications from STEP like infections or extensive post-op hospital stays, two things that we ahve been warned about by parents whi have had STEP operations.

Further complicating this is the possibility that with 48 cm of small bowel tat Ellie may not need to have her bowel lengthed but may just need to have a chance to let is come down in size with time and a reduction in pressure. This is the approach that was used in short bowel kids before STEP and may be the ticket for Ellie. Maing it more attractive is the fact that if it were not successful, Ellie would essentially have the same legnth of bowel that she was born with and could theoretically be a candidate for another surgery, like STEP, in the future.

STEP is a one time shot. The next stop after STEP is a multivisceral transplant. No thanks.

Ellie's surgeon returns from a series of conferences next week. We are going to lay the cards on the table with him and get our concerns addressed as soon as possible. We have a lot of info and are given the responsibility of weighing what is best for Ellie.

We are continuing our rapid education in Pediatric Gastroenterology. Blah, blah blah, dilatation, blah, blah, blah, mesenteric blood supply......

It is dinner and a movie night for us, hospital style. A DVD Bewitched rented in the lobby, some takeout and some munchies from the cafeteria. But I've got my girls with me, which is way better than X-Men anyway.

Maybe a theatre tomorrow when Ellie is settled a bit more than she is tonight.

Back to the old routine

After a few days of instability, Ellie is back to being to her old self today.

Her tests from earlier this week showed no 'C-diff' or Clostridium difficile, a nasty bactrerial infection that gives kids diarrhea and other problems and can be particularly tough to treat in some kids. There was a chance that she could have had this and that could have been the cause behind her bowels being so active on Sunday and Monday, but a culture shows otherwise. This is nice because while she was in the possible category she had contact restrictions on her which limited how much she could do outside of her room and also required her nurses to don robes, gloves and other gear when comign into the room to prevent the spread of the infection. All clear on c-diff is a good thing.

She is back to normal in other ways as well, spending a good portion of last night in the 'wide awake Ellie' mode, giving her mom a hard time through most of the night. abby is tired this morning but happy to have a perky little girl in her lap.

We are starting her on milk again today and going to try a slight increase in her feeding amounts. Last night when Abby held her she spent a long time 'rooting' or trying to find food and this seems like her way of saying that she is ready to start eating again. We'll see how it goes and adjust accordingly.

We are xpecting a visit from Bub, my college friend who lives west of Boston this morning. He is in need of a visual confirmation that Ellie is okay and we will make sure to get her up and around with him. Hopefully he will stay for unplugged time this PM and go out into the garden with us to see some sun.

I got my second renewal of my Children's Parental ID today. Normally they are good for two weeks at a time. When I told them that it was my second renewal, they told me that they hoped I wouldn't need a third and then offered the monthly renewal when I told them that we aren't going anywhere fast. It is amazing to me that everyone in the place seems to have drunk the same parental relations Kool-Aid. It seems to be based on these tenets: 1) Your kid will get out of here. 2) We hope that it happens sooner than later. 3) But while you are here, what can we do for you to make things easier? 4) You are in the best place in the world for your kid.

All of these make things better for us each day. Today is day 46.

A new schedule for the Ellie Brogan local

The results of Ellie's GI series are encouraging for us. Three weeks ago it took 6 hours for the barium dye to go from her stomach to her colon (normal is about 2 hours).

The GI series that we did yesterday showed that it is now only taking 2 1/2 hours for the dye to go from top to bottom, an indication that Ellie's anastomosis (the bottle neck where her distended small bowel meets her smaller large bowel) is getting wider and allowing things to pass more easily. It is still slowed down as it moves and we aren't sure whether food wil act the same as barium dye, but it is encouraging for us.

The short bowel team meets tomorrow to discuss the patients in the program and we are anxious about what they have to say. We hope that after the bump in the road that has taken place over the past two days that we can resume feeding her tomorrow at the same slow rate that we had been doing up until the weekend.

Meanwhile Ellie sleeps the day away:

Some photos from our weekend fun

Even though Monday sort of sucked, we had a great weekend with Ellie.

We loaded up her strolller for a walk:



















On Sunday, we put Ellie in her carrier for the first time (with Mary Janes on, of course) and went to the garden for a walk, and found FREE Ms. PAC MAN!!! Ellie's game is still developing but as you might expect, Abby is a whiz at it.



















Then we went to the playroom for some time on the floor, protected, of course, by a fancy homemade quilt:

Some bumps in the road

My sister Beth came to visit yesterday afternoon for a while after dropping her boyfriend, Bob, off at the Boston airport. After some quality Ellie time and a nice nap in her lap, it was time for Ellie's 6 PM bottle which Beth gave to Ellie and she woke up just enough to sip the last of it down before falling bcak asleep.

Well, the shit sort of hit the fan after that.

5 minutes after the bottle, Ellie barfed up the tiny bit of milk that went down. Coughed it up is more appropriate since it came up with such a good amount of gas that I forgot to vent from her belly that the milk hit her knees. No problem. My fault for not venting her before the bottle.

This was followed by a 6:45 blood draw (did you know that babies can have blood drawn through the veins in their scalps? Very cool) and a urine sample to screen Ellie for infection and urinary tract infections (not so cool) since her blood work from Sunday showed some number that might indicate an infection underlying her other problems.

We had a fussy night after that and at 9, as I held her, Eleanor sputtered a bit, burped the most vile gas in my face that smelled like a pile of manure left to rot in the sun at low tide, and barfed a load of yellow-green on her blanket. We came as close as we have so far to a widespread barf-o-rama.

Ellie went to sleep at that point and slept through her midnight feeding (I got the midnight milk into her after a struggle) and then slept through her 6 AM feeding until 8 when she got weighed, cracked the 8 pound mark and was otherwise harrassed by the nurses. Sort of scary how much she slept.

Mid morning, she pooped. Apparently poop isn't always great. Sometimes with an infection it can come from somehwere other than food.

So off she went for xrays. Without barium, with barium, you name it, we will have a picture of her gut today.

Apparently her intestine is continuing to dialate, which is bad. Whether food is going down is the big question.

Hopefully things are still moving.

For now, she is a bit dopey, but we are here and when she is with us she is very happy.

So much for going to a barbecue tonight.

Sorry, Jess. Doodie calls.

Steady as she goes

The last day or so has been uneventful. Ellie continues on her fedding schedule and has had much less blowback from her feedings by botlle than in the pastwith feedings by her G-tube. The quantity is less per hour or per day, but so far she has opnly missed one feeding since going on the bottle. We are going to discuss increasing her feedings on Monday but are leery of going too quickly. Ellie is becoming a better burper these days and that helps her control her voluminous gas which, in turn, helps her keep her belly happy.

As part of her TPN feeding, Ellie now gets detatched from all of her tubes for a full 2 hours each day. This gives her body and liver a rest from the TPN wich is important for her. For Abby and I this gives us two hours each day to go on field trips in the hospital. We have been to the garden, to the cafeteria for dinner, for ice cream, to get a newspaper, to sit in the lobby and watch the people go by and all sorts of other cool places. I brought her fancy new stroller from home and we just pack her up and off we go.

Good Fun.

A new room

Three families with short gut babies went home yesterday. One to Washington, DC, one to the Boston suburbs and one to somewhere that I'm not sure of. They had each been here for more than a month and one had been here since December. We had spoken with the parents a lot in the past wekks about our kids, their treatments, and their progress, an informal support group of familiar faces on the floor. Sometimes I think that the dynamics in prison must be similar and I want to ask folks how long they are in for, but resist.

It was encouraging to see them pack up and get out of here, even if if was nerve wracking for them to leave the comforts of the hosptial where help is only seconds away and lots of help is only a bit further if you push the red button. But red button or no, home is the goal and off they went.

What this meant for us is a change of scenery to a single room without the musical chairs approach to roomates that we have seen over the past three and a half weeks. By lasy count we had just shy of 10 different roomates during that time. Some were there for multiple nights, some were there less than 24 hours, but none were long term guests of this crazy hotel (I still slip every now and then and call it a hotel) and sharing a room was not so much fun.

Now we are in the penthouse, with our own bathroom with a real shower, a TV remote that we can turn up without disturbing the neighbors (or vice versa) and our own space for our stuff, that doesn't have a line of bathroom traffic going through it.

I spent last night in here with Ellie and we did just fine. We skipped her 6 PM feeding because she barfed just before my parents left yesterday afternoon and by 12 she was fired up and fussy and slurped her 3 ml of milk like a champ and went to sleep for me, off and on until 6 this morning. We both slept soundly in the dark without the hiss of another baby's ventilator or the beeps of another baby's machines.

Maybe we slept too soundly because at 6 I heard gassy noises coming from her crib beside me. Using the auto-daddy response, I got out of bed and there I stood in my pajamas and t-shirt staring at our nurse who had quietly slipped in and was venting Ellie's gas from her G-tube.

I have to give her an A for professionalism because she never flinched at me standing there, half dressed and frazzled. She just went about her job. I on the other hand realized my state and quickly lay back down to try again at getting up with dignity (and the dorm style 'half twist').

I wonder what kind of good stories the nurses have about parents sleeping in the rooms. I know that they have stories baout the labs across the way and what they have seen through the windows late at night....

Maybe on Saturday morning I will be expecting the early AM visit and will get up in a better way.

Gonna turn my TV on now and not worry about the volume.

Abby's glimpse of the next stage

Yesterday morning as Ellie and I lay in bed together I talked the nurses into letting Ellie get her milk by bottle. When the head nurse came back and said that the doctors had approved it, I was ecstatic. I headed down to get breakfast and while waiting for the elevator I couldn’t hold it in any more. As the lady next to me said good morning I replied with, “My daughter is going to drink out of a bottle this morning!” Now anywhere else that would be considered an odd reply, but not at Children’s.

Everyone around me gave a small cheer.

Yesterday was a big day in many ways. The three of us went to playroom on our floor for parent coffee hour. Ellie got tummy time while Gib and I realized how lucky Ellie is yet again for the simplicity or her problem.

Right after coffee hour Ellie’s nurse ran a test to see if Ellie was able to maintain her own blood sugar by taking her off of her TPN for an hour. What that meant is that we got to walk around the hospital for half of that time with a baby with no IV stand. With Ellie all bundled up she looks just like any other normal baby and I didn’t have to worry about how fast I was walking or if the pole would tip as I got into the elevator. It was great, and gave me a glimpse of how good life will be when she is off the TPN either for short periods or for good.

I spent the night with Ellie Monday night and had a much quieter night.

And this is the scene that I saw as I arrived in the room.

I guess you now know how Gib has all that time to write in the Blog.

The Sun's Gonna Shine in in my Backdoor Someday

The sun is finally shining in Boston today after a week of serious rain that has flooded the state with ridiculous amounts of water and what is quickly turning into the Boston news version of Katrina. I just heard the words 'heartbreaking devastation' from a reporter. Oh wait, that is Fox, not the real news.

Eleanor had an uneventful night last night. I gave her bottle at 9. My first. I had to ask for instructions from the nurse, who laughed at me and showed me the tricks of giving a tiny, tiny bottle to the girl so she doesn't suck in a whole lot of gas but gets every drop of milk that was measured out for her.

By 10:30 she was quiet and we both went to sleep as soon as the Red Sox finished off the Orioles and I got an update on the Yankee score (If your team (the Rangers, for example) is up 9 runs after 2 innings and lose 14-13, you should feel great great shame).

Is this how my night will be?

Nah. Abby called at 10:50 and woke Ellie and I up. Damn.

A fresh diaper and a good burp and Ellie was asleep by 11:30.

At 1:45 she gagged loud enough to wake me up. As I went back to bed 10 minutes later, the wreckage of my bedding that was trewn across the floor made me realize how quickly I can go from alseep to vertical and over Ellie's crib.

It reminded me of a time in Florida when we sailed a friends's boat through the night. In the middle of the might as abby and I slept, the boat shifted and the boom swung across the oat, making a great loud bang. Abby and I still discuss how quickly we went from alseep to standing in our raingear. Watching Ellie at night is similar to that.

One good gag will get me upright in a flash.

Interestingly, Abby and I have learned to filter out the other noises in the hospital and won't stir for a buzzer in the hall, an alarm on the kid in the next bed, or even a gurgle or cry from the next bed. We have learned to tell home team noises from the away team noises and even in my sleep I can tell the difference.

Her 3 AM bottle (I don't know who chose 9 and 3 as the hours for feeds, but I would have voted for better hours) was bit slow, but as fas as I can tell, it stayed down for the night. Eleanor's collar was wet this AM. I think that it is drool from her new mouth that is finally getting to do it's thing.

Then we both slept. an uninterrupted 3 hours from 3 to 6.

Now it is morning and time to do it all over again.

So we move on today with more food. I spoke with a member of Ellie's team today (medical team, not the pink bracelet brigade) and she thinks that we may up the food amount today.

Fine with me to up the level or stay here for another day. I'm sure Abby will have something to say about this.

Some new takes on Ellie's treatment

The big news today is that Ellie started feeds again, but this time, instead of feeding her through her G-tube, Abby suggested that we try feeding her through her mouth. At 9 this morning Ellie got 3 cc's of food ( a cc is about the volume of a quarter), so she got a tiny 75 cent stack, but kept it down well enough to get another 3 cc's at 3 this afternoon and if all goes well (cross those fingers) she will get another in six hours. If her past feedings have been any indications she gets backed up at about 6 cc's and this will give her time to work through the feeding before getting another blast of food.

The doctor is behind this and told us that processing the food through her mouth is preferable to feeding throughthe g-tube since it will stimulate her mouth, stimulate her salivary glands, digest some of the food in her mouth and stimulate her liver, which we always like.

Ellie also met the 'healing touch' nurse today who explained the 'energies surrounding her body' and the ways to use her energies to help her bowels work. The funny thing for me is that the 'healing touch' nurse rarely touched Ellie and just passed her hands above her body.

Who am I to judge, though? I'll take anything to help her bowels and it can't hurt, right?

We did learn some baby massage techniques which we defintely will use.

A dad and his girl on Mother's Day night

Abby and I alternate nights at the hospital with one or two nights each week at 'home' in Wayland with Abby's sister and family. Tonight was my night in the barrel as they say and I drew a doozy for a couple of diffent reasons.

First off, it looks like my girl is becoming a snuggler and just won't tolerate being put down until she is good and ready. I guess that this is a good thing since a lot of babies in the hospital lack human contact and have strange developmental issues (like flat heads, for example). She definitely doesn't suffer because of lack of contact and knows how to find the nook in both Abby's arm and mine. She is also learning to find a finger to suck on when there is a hand nearby. I am still a hand washing maniac so she ets a finger whenever she wants one. It is encouraging that she still has so much mouth action.

Second, she is exceptioanlly gassy tonight for some reason. Now when I say gassy, a lot of parents roll their eyes and say that every baby is gassy. Well, I have the professional opinions of the nursing and medical staff at the hospital to support Ellie's exceptional gas. She makes the gas and it just doesn't go anywhere and hurts her belly until she gets it out through a burp, a fart, or most often, through her G-tube. Tonight for some reason, the gas was just passing through her stomach and intestines but never finding a way out.

She was miserable and crying in PAIN for about three hours tonight and there wasn't a thing I could do about it. It was the kid of crying that made me want to cry because there wasn't a thing to do about it. She was miserable.

In the middle of the maelstrom of crying, I started thinking about how tough it must be to be a pediatrician or neonatologist or pediatric nurse who has to deal with kids' pain when they can't tell them where it hurts or whether it is getting better or worse.

I saw behind the looking glass about two weeks ago when Ellie was getting a procedure done in another room. Apparently the pros can grade infant and child pain without words based on a set of criteria such as whether or not the chuild is consolable with touch or holding. They even have posters of how to grade the pain.

Nothing was working tonight with Gut Girl and she must have been tallying up the points because the nurse offered Tylenol for ther pain. Tylenol for babies is ike codeine for adults. I passed on the dope and she gave us a half-assed burp about 11:00. I guess that did the trick.

She is wide awake right now watching her mobile go 'round. I'm crossing my fingers that she will get through tonight without another explosion.

A nice Mother's day present

We had another dookie last night, hopefully the proceeds of the short feeding that Ellie had on Thursday of this week. After I left last night the girl gave a good grunt, scrunched up her face and let one rip. Abby says that it was the smell that gave it away.

Makes me proud.

This is sme good news from the plumbing and we hope that she can build on this. Abby and I think that moving even more slowly that we have been moving on her feeds may be the trick so that she gets food, but doesn't get overloaded with it and get sick. we will talk with the doctors tomorrow and see what they think about this plan.

In the meantime it is Mother's Day in the children's Hospital. I keep thining about John Prine's song about Christmas in Prison. we are a long way from that, the key is on flowers being small since the room is little and we don't have a lot of space, but I managed to find some nice little flowers.

Abby has Ellie asleep on her chest and they are napping. A great way to spend a rainy nasty Mother's Day.

Hopefully Eleanor is dreaming about poop.

Another shot at food, plumbing, and physics

This morning we started Ellie on food again to see how well her gut has recovered and whether it can tolerate some food, which would be a great sign for her progress. At about 11 AM our stellar nurse, Carol, hooked up a tube to Ellies G-tube and fed a tiny bit of breast milk (1 ml/hr is just a very slow drip) directly into her belly.

Since gas has been a problem for Ellie that we think has caused her to regurgitate the food that has gone into her stomach in the past we attached a new feeding apparatus to her G-tube, called a Farrell Bag. This allows the food to go into her stomach but, in theory, any gas will be allowed to vent out in the process.

Unfortunately, what we ended up with was a whole lot of food in the tube, the gas stuck behind it and no way for the gas to effectively get out or the food to get in. The physics that make a siphon work were in effect and we got a stale mate for most of the day.

At 6:30 tonight the food that had reached her belly was not agreeing with her and showed that she was still not ready for food. she burped up a bit of the milk with some gas and we got the word from the doctors to stop her feeding for the night.

Another failure of Gut Girl's parts, but no to fear. The doctor told us more or less to expect this and that it was not of great concern to him if it worked or not but was worth seeing if the open tube in her gut was ready.

We will give her a day or so and try again. Apparently even if the milk doesn't go down the tube all the way it is still good for her to have it there for a while and bath her stomach and some of her intestine with milk.

So we wait and try again in a day or so.

SSDD.

Yesterday was my due date

Hello it is Abby, it has been a solid month now and I figure it is about time I made a contribution to Ellie's blog. I have also gotten used to this new "normal" so much so that I feel that I can share with everyone. I don't know how Gib does it, from day one he has been stronger then I have in the fact that he was able to verbalize everything that we have been going through and then type it on to this blog, not caring who reads it. And now it is my turn. I think by reading this you can see that Gib is the more lyrical one of the two of us. And please feel free to correct my grammar, just give me a call here in the hospital one of the days that I have been here for over 24 hours and tell me what you think.

I feel like Gib's last entry was very dark, it is true these are things that we have been contemplating. But, we have also been thinking about how lucky Ellie is. We have met some very strong parents here at Children’s. Parents that have been here for 7 months and still have a few to go. Parents whose child has a short gut, heart and spinal issues. Ellie so far only has the short gut as her only issue. We have had everything else looked at many different ways and still they say she looks great. She is tough and both Gib and I have great guts and hopefully she inherited at least that from us.

We are just playing the waiting game now, our surgeon is leaving for two weeks on Friday to go to some conferences so we know that we have these next two weeks to offer Ellie food again and to sit and admire how cute she is. Offering food is always a bit stressful because you can't help but get excited that maybe this time she will keep it down. Then it can be really depressing the first time she pukes. My thoughts always get a bit dark when this happens but I try to remember that this is just a bump in a very long road.

She has a long way to go so if tomorrow’s food comes back up then we will just try again the next week. I just need to remember not to make puke so important.

Fear and Numbers

In the past week we have had some interesting and sobering conversations with Ellie's doctors about her condition, her care and her short and long term prognosis. Some of the facts have been startling and some of them have been encouraging.

Whenever I get information with numbers attached I think of Twain (or is is Disraeli?): 'There are three kinds of lies: lies, damned lies, and statistics.'

Some of the statistics that we have heard in the past week:

If Ellie stayed on the traditional TPN bag as her whole source of food, there is a 75% mortality rate after 4 months. The TPN causes liver damage and there isn't anything that most hospitals can do about it except transplant three or four organs at a time. Yes, they do that.

Scary numbers to be sure and the jury is still out on what the Omegaven fish oil version of TPN does for liver function, but it was a definite eye opener for both of us. Hopefully Ellie will progress and get some enteral (real) food into her diet which will give us more time to get her eating and doing things away from TPN.

The other intersting statistic is related to the new STEP surgery which lengthens the bowels of kids with short gut which was developed and studied here at Children's:

There have been more than a dozen STEP surgeries on infants at or near Eleanor's age, including some newborns who were operated on when Ellie had her first operation at Yale.

The average patient got about 25% of their food enterally (real food) and 75% from TPN before STEP.

After the surgery the average patient needed 25% of their food from TPN and got 75% enterally after STEP.

This comes with statistical deviations, of course, but there is a good record of this sugery being 'a success' with kids in Ellie's sitaution. The other portion of the patients food would come from TPN but ideally would be reduced over time as her gut gets better adapted to doing extra work.

This has led Abby and I to revisit the fact that, although Ellie looks great to us right now, she may not make it to 2,3, or 5 years old. It is just a fact that no matter how much we fight and work to get her healthy, she may not adjust to living with a short bowel. These are facts of her situation which suck. It may be that we are wading in a wide river of Denial but Abby and I are fully aware of this and talk about it which is good.

The upside of this is that we have found ourselves enjoying time with her more each every day since. Even the screaming diaper changes at 2 AM and crying at 4, 4:15, 4:30, and 4:45 AM which seem to accompany our nights in the hospital. It is dark and morbid, but thinking about her future makes us want to spend as much time as we can with her.

I swear at 4 AM the other day she looked up at me and puckered up.

So damn cute.

For right now she is just a hair under 7 1/2 pounds (up a pound and a half since she was born a onth ago) and her bilirbin numbers (the indication of the function and health of her liver) have stabilized at 3.5. Up is bad, down is good, zero is great. we met a dad the other day who told us that his son topped out just north of 12 before getting Omegaven.

The doctors tell us not to be concerned about her progress and that she is doing just what she should be doing.

For now we wait and watch and put Ellie in her bouncy seat that I finally put together yesterday.

No Rush, no hurry

We sat down and spoke with Dr. Jacsik, Eleanor's surgeon, last night around dinner time. I'm still not sure when these people sleep or see their own families, but I am quite happy that they spend so much time with my family.

Dr. Jacsik told us that since Ellie's GI study (where they put parium dye into her belly and follow it through her gut with radiographs) showed that her intestines are in fact open and that the dye did move through her gut, taking a leisurely 6 hours to do it. It should have only taken 2 hours to go through, but anything is good right now.

This has taken the pressure off for surgery at the 6 week mark and could give Ellie and us more time to see how her guts will recover and what kind of talents they will get on their own. If her GI were blocked, we would have been looking at surgery sooner than later but this is a relief to abby and I who are anxious about hurrying into anything.

In the meantime, we keep hanging out, injecting her with fish oil, and watching her be a baby. Not bad duty.

She was a bit uncomfortable last night since the site where her G-tube goes into her belly has gotten a bit red and inflamed. A bit of tylenol makes everything better, and she slept for most of the night, which was nice. They are watching it very carefully and she may get some antibiotics to be safe. One of the nurses was surprised tat she wasn't on them anyway.

I hate the bumper stickers that say 'So glad I voted for Bush', but I would like one that says 'So glad my baby is at Boston Children's.'

A month down the road

It has been a month now since Eleanor was born. To be honest it is a great little milestone for us to have Ellie hanging in there after a month. Nobody ever told us that she was doing anything but fine, but at times we couldn’t help the scary thoughts from going through our heads. We both have wondered to our selves and to each other if she would make it this far. If yesterday’s show was any indication, we were just silly to wonder that.

I told some folks in the first weeks that Abby and I had matured more in the first few weeks than we had in the past five years. Well we are old, grizzled veterans now.

We have also had a condensed, Cliff Notes education and have learned more than we possibly could about things we never knew exisited.

20 or so things that we have learned:

The human small intestinal tract is like a sea star. It will grow back if given enough time to take on the function it should have.

Anastomosis, atresia, volvulus, and parenteral nutrition is not just fancy words for surgeons. I have used each of them in a coherent sentence in the past two days.

Baby girls are cute even with tubes sticking out of their noses, arms, legs, and stomach.

Friends are good to have. we have heard from friends that we had not been in contact with for years and it is great to know that so many people care about us.

Family is great to have. Our families have been amazing supporting us in the last few weeks. Even though nobody quite knows what to do to help, we are getting every bit of support that we need and that makes this crappy situation better.

Chocolate chip cookies make a good breakfast, lunch, or dinner.

Lots of people have bad stuff happen to them. Feeling singled out and alone in this journey was the toughest part in the first few days. Meeting other parents with kids who are sick made the first week a lot better for us.

There are some really super smart people out there who know a lot of stuff about really complex things. A lot of them work at Yale and Children’s. We chose up sides and they are on our team.

Some people’s idea of a ‘job’ is different than what I think of a job. Apparently some people think that opening up six pound babies is like making pizza or shoveling shit.

Nurses are your best friend in the hospital and are really good at what they do. Get this into your head and you will go far and sleep well at night while they watch your baby.

Murse is what nurses call male nurses. They are rare in the NICU, but you do catch a sighting every once in a while. Sort of like a limpkin.

Normal is relative. Going home to see the earlier version of normal sucks.

Distance screws up your perspective on a situation. Come and visit the kid. You will feel a lot better about how she is doing. I promise.

Lots of people love us. It makes us cry to think about the people who are thinking about us and Eleanor but we have learned this fact. We love you too.

Apparently my strain of bullshit extends to written things as well as tall tales.

Front to back. Key words when you have to play with the other team's equipment.

You can live on pastries and coffee and still lose weight. Cheap cheeseburgers? Not so much.

If you are tired enough you can sleep anywhere, usually in a room full of visitors.

It is .7 miles from Boston Children’s Hospital to Fenway Park but going to games isn’t as much fun when you have to check your voicemail 11 times for messages from the hospital.

The Boston Globe kicks the Herald’s ass. I don’t care what Adam says. But they are both better than the New Haven Register.

There are lots of things that could be wrong with Ellie that are a lot worse than her gut problem. Talking to parents of kids who will never walk, talk, or breathe on their own has taught us this.

If you wear your Children’s Hospital Parent ID out of the hospital, you stand a good chance of making the cashier at Best Buy cry on the spot.

Telling a hospital receptionist that you are at the hospital to meet your daughter who has been transferred by ambulance is a set of words you may have trouble getting out of your mouth.

Following you daughter’s ambulance up the highway is not fun.

Blogs are great therapy.

Pipes are clear from the top and the bottom

The doctors have told us that as far as they can see with the barium studies, Ellie's intestines do not have a blockage in them, which is good news. The barium passed from her lower half to her intestines well on Tuesday and then from her stomach to her large intestine quite freely yesterday.

The next step is most likely to try her on 'feeds' again in the near future to see how her repaired intestine is progressing and to continue to try and teach it to play with rest of the kids.

An interesting side note: the nurses told me that when Eleanor started her Omegaven fish oil fat supply that we may get a 'fishy odor' from her stomach as a result. Well it may smell like fish to the untrained nurse's nose, but to this kid who has dissected hundreds of them, her breath smells just like squid ink, fresh from the squid. I keep thinking of the tattoo that I would give myself in Florida after teaching a squid dissection. 'Mom' or 'Mother', just to make the kids squirm.

Abby hasn't been in to smell it yet, but I hope she can handle the stink. Abby is a bit sensitive to smells like this. But if it means ellie can stay on TPN for a wile longer, I think Abby can learn to live with Ellie breath smelling like poop. Wait, she already did learn that one with the dog.

A bit of sunshine in my month of fun and games

Today it is sunny and 80 degrees in Boston. A great day for, well, um, taking your daughter to the bowels of the hospital to radiology while they put some radioactive liquid into her belly and watch it go down the tube. Just your normal Friday afternoon stuff.


Great, now Gut Girl is also Barium Baby!!

Hopefully the series of x-rays (the pros call them pictures, or radiographs, by the way) will show that the liquid is moving through her stomach, through the small portion of her small intestine (which is actually quite wide now), through the anastomosis ( the fancy word for the repaired spot in her gut and into her large intestine. This will show whether there is a blockage in the pipes and may tell us why her feeding isn't progressing like it should.

The bright side is that this evening, Abby, her nephew Alex, her niece Claire, and I will be walking up Brookline Avenue to visit mecca for a period of homage to the baseball gods as my Boston Red Sox and Ace pitcher Curt Schilling take on the Baltimore Orioles!!! Sunny and warm for an evening of baseball. Who said this hospital thing was all bad?? Heckuva way to get to a ballgame, though.







Abby's sisters (Karen is in town from Ohio to visit the baby) will be coming in tonight to watch Ellie while we go and I will be on the pullout in the hospital tonight. No cold beers for this kid, I guess.





But I get to sit in the grand stand and watch a ball game.

An opportunity for a new business

This past weekend Eleanor's PICC line was moved from her right foot to her right arm. No big deal for the doctors and staff around here until it was time to change her clothes.

We couldn't get her arm with the PICC line through the sleeve without detaching the IV, something gthat needs a nurse and is not encouraged since it opens a sterile area to potential infections (which are BAD in a kid with IV nutrition).

Within a day of this, my mother, my aunt and my grandmother were on the scene and by Sunday we had a line of adaptive clothing on site for Ellie with the seams of each right arm opened and replaced with botons, snaps and ribbons to close around her arm without disconnecting the IV.

In the picture below her right shoulder has two snaps at the seam. Changing clothese couldn't be easier. The nurses who deal with PICC lines all day long say that they have only seen an attempt at this once before and there is a need.




I told my mother that she should start a business modifying clothing for kids with medical special needs. She says no, but if anyone wants to fire up the old singer, we'll take 5% for the idea.

A New Plan for the coming weeks

Ellie isn't going anywhere any time soon. That is very clear to us now that her treatment has stalled for a bit following last week's attempts at feeding her. She is still recovering from those attempts and will most likely get another shot at food this weekend or next week. It is amazing how te first few weeks seemed to last months, but the opposite is true now. Days tick by very quickly now and just like that it will be a full month this coming Sunday.

Abby is out on maternity leave until August. That was planned from the git go.

I had some fuzzier plans when we thought that Eleanor would be coming home like most other babies. Ihad initially planed to take two weeks to get Abby and Ellie setlled and then go back to work. My how things change. Fortunately my employer has been great about this.

After we knew something about her condition and the prognosis for her care I got approval from my bosses to take a full month to begin with. That will be over this coming Monday.

This morning I asked them for another two weeks leave followed by a period of reduced time that will allow me to work while taking care of things here at Children's. With a stack of sick time in the bank, it will be a while at this reduced time before I have to take unpaid time away.

Hopefully our girl will be on the mend by then and we can avoid that.

I am very fortunate that i have a job that requires me to work from a home office. The great thing about this is that as long as I have an internet connection and a cell phone signal, your home is as good as my home. Believe it or not working from a base near Boston will be easier than Connecticut and reduce the time that I drive to meetings by a lot.

I hope to hear from my bosses soon about this plan. Ellie comes first but taking care of other things has to get done, too.

A call in the middle of the night

We got the first of our middle of the night phone calls from the hospital last night. When the caller ID showed a 617 phone number I almost barfed and when I heard the nurse's voice saying that she was calling from Children's I was very close to it. Fortunately, the nurse was a real pro and knew about her audience. The first words out of her mouth were "Ellie's fine."

Gotta love professionals.

It turns out that since Ellie has had so many blood tests in the past week for this, that, and the other thing, her little 7 pound body was running a quart of so low. She was going to need a blood transfusion. No big deal, they just wanted to be sure we were okay with it. No signs of bleeding, no signs of other problems, she was just stuck by a few too many phlebotomists over the last few days. Yeah, I said phlebotomist. Didn't even need to spell check it. My vocabulary is swelling with this hospital stuff.

Anastomosis, atresia, Necrotizing Enterocolitis (thankfully not relating to Ellie, though). The list goes on each day.

This was a welcome explanation for Abby and I who noticed that Ellie was lethargic yesterday and didn't have her normal period of being awake cute as can be Ellie. It turns out that her red blood cells were not all there and therefore not enough oxygen was doing it job and she was sleepy.

So a transfusion of fresh blood perked her up and made me want to give blood today. Unfortunately we were pretty busy with other stuff and it didn't get done.

Maybe tomorrow. How many people say that every day? Apparently children's needs a lot of blood each day to do the great stuff that they do. I am on it manana. I promise.

Menhaden Matter, In a New Sort of Way

Right now, Eleanor is being fed with a Total Perenteral Nutrition (TPN) system. This consists of a bag of fluids that looks like Lemon-Lime Gatorade and a fat white syringe of fats that are injected into her Peripherally Inserted Central Catheter, or PICC line in her right arm. This supplies her with almost everything that she needs to grow and develop. TPN is one of theose miracles of modern medicine that wasn't around 30 years ago that saves lots of lives, both infant and adult.

One of the quirks about TPN is that when infants are on it for an extended period of time (which varies from kid to kid), there is a negative effect on the kid's liver, eventually causing cirrohsis over time and necessitating a transplant of one, two or more organs. Nobody knows why the TPN causes this damage in kids but it is an accepted fact of the feeding through TPN that once you start it, you are in a bit of a race to get the kid off of it before the liver damage happens.

Curiously, and unbeknownst to us before we came to Children's, there is a doctor on the staff who is working on the million dollar TPN mystery question and has an innovative new treatment that may better better for kids than the traditional TPN.

Traditional TPN uses soybean oil as the fat. In a curious turn of events for Abby and I who have spent our lives chasing and working with fish, the doctor here is trying using oil from menhaden, a nasty little oily fish that most people use for bait or grind up into fish meal for use in dogfood, as a substitute for the soy bean fat. It turns out that the Omega-3 oils that are in the fish oil are anti-inflammatories and may decrease the ill-effects of TPN in infants and small kids. So far the doctor has had either positive results that reduce the ill-effects or null results that have no effect either way compared with soy oil.

Abby and I spoke with the doctor yesterday and asked a million questions of him and agreed that this is the best thing for her since the name of the game in her treatment is time. We hope that fish oil wil give her the most time to teach her broken intestine to be a super intestine.

Besides, if there were ever a sign of something that we need to do, having a fish show up in a hospital just may be it.

We recieved word today that Ellie has been approved by the FDA to be a participant in this study and will begin her fish eating life with menhaden. Abby and I will continue our fish eating life tonight with a round of sushi.

No menhaden on the menu. We hope.

The Waiting Game Continues

Ellie had a rough weekend with her milk feeding and was uncomfortable with her milk feeds. She vomited a few times and was close to vomiting a few times. This was an indication from the doctors that she may not be ready for food at this time and they decided yesterday to stop her feedings since they were not being theraputic for her. Her TPN feeding is working well so far and overall she has gained just over a pound since she was born. All without ever swallowing.

Although this is a small bump in the road from the ideal recovery from her surgery, the doctors told us that it is to be expected that Ellie will take 4-5 weeks to recover from her repair. We are just over three weeks post op right now and the doctors are not concerned about her progress.

So we wait. And watch. Two things that we have been well briefed on since the beginning of her care at Yale. Ellie is comfortable and awake and alert for a period of each day which is great fun for us since she is getting past the googly eyed phase and can almost focus on things like her fancy new mobile that is latched to her hospital crib.

Abby got a Playystation Portable for her birthday to kill time wile we sit and watch the sleeping baby and is busy learning how to shoot bad guys in fantasy land. Video games were a guilty pleasure for her before Ellie but now that she can do it guilt free, she is excited to blast away at the bad guys.

We will begin 'feeds' again on Wednesday. I hate that term. It makes me think about slopping the pigs.

Progress Report Coming

Ellie had a slow weekend. She had tiny bits of milk on Saturday, but was sick that night and they stopped the feeding. By this morning, there was still some milk in her belly, which means that it is not moving through her system as it should. A nice poop yesterday was encouraging the something is moving through, but not quite as much as we'd all like.

We will be discussing this at some point this morning with Dr. Jacsik, Ellie's surgeon here at Children's who is coordinating her care. She has gotten some medication to help her bowels start working correctly, but still vomited this morning.

Unfortunately it happened just after the very nice nursing students had finished getting her vital signs and playing dress me up Ellie in the prettiest outfit that they could find:

"Oh, isn't she cute!"

Bleeaaahhh!!!

Nice timing, kiddo!!

We're not sure what is on the horizon for next steps, but still have ultimate confidence in the way that Ellie is being treated.

Patience.