A Nice Day for a Walk

We finally got our act together today and took Ellie for a walk. Since all of ther machines run on batteries we unplugged and put her in a stroller to go and explore the hospital and show her some sunshine.
Our first stop was the elevator. quite and elaborate rig to go for a walk.





















Then it was off to the great gardens in the middle of the hospital for some action photos of Mom and baby in the garden:

A visit from aunt Beth, Ellie's Fairy Godmother

Beth brought a new blanket that my mom made to add some pink to the crib, an unnecessary three pounds of Hershey kisses and some very slick new Pink Wristbands with Team Ellie printed on them.

My sister had lots made if you want one.

Stance! Advance! Retreat!

The past few days have reminded me of a drill that my Dad used to use to teach his basketball teams how to play defense. I remember this from being a ten year old kid on the sidelines cutting orange slices, not from my short career as a player.

The drill would go something like this:

My dad would yell 'stance!" and all of the players would get into a defensive position with their kness bent and standing on the balls of their feet. I have been in a defensive position for three weeks now.

Playing defense is no fun and makes you want to barf. I have that feeling most of the time these days as my baseline.

Then he would yell 'advance!' and the whole team would slide left or right as my dad pointed with his arm. The players were at his mercy to follow his lead.

Yup, got that feeling.

Left! Ellie barfs.

Right! She kicks out her IV line.

Left! Take her to radiology for an x-ray.

Then to make things more interesting my dad would yell 'advance!' and make the team slide forward or' retreat!' and have them slide backwards.

Advance! Take her to get a new IV catheter put in (the coolest thing that I have witnessed first hand in this whole experience, by the way)

Retreat! Vent the gas from her belly.

Advance! Make sure that the plans that we discuss with the doctors match with the plans the nurses have.

Left! Right! Advance! Retreat!

My thighs are on fire. But for once I am playing some good defense.

Another early morning of fun

I finally got out of here last night at midnight. Abby was feeling the effects of the mommy leash that keeps her within arms reach of Eleanor and one of us needed to sleep so I headed to bed for a few hours.

Ellie must miss her dad at night because as soon a I left Abby tells me that she began to get fussy and either barfed or was screaming every two hours from 12 to 6 this morning. Another tough night for Abby. ellie is tough to burp and at 3 AM her belly was so full of gas that they opened her G-tube to vent her belly, an added benefit of Ellie's extra plumbing is that there is access to her stomach any time you want it. Curious what is in her belly? grab a syringe and pull it all out, check it out and put it back in. No kidding.

But it was a second very long night for Abby.

to top it off when I arried this morning at 7 Ellie was wide awake and fussy again. I picked her up and burped her and as I put her back down, I noticed that she only had one tube coming from her feet instead of two.

Oh crap! Where the second line should have been there was a bandage with spot of blood.

Ellie had managed to kick her IV line from her foot and cut it off. This is her PICC line that supplies her food through a tube that runs up her leg into her chest. It was put there by the surgeons at Yale and would need surgery if they couldn't fix it.

Abby gets anxious with vomit around Ellie. I discovered this morning that blood does it for me.

We called in the cavalry and they were there in force more quickly that I had seen before, and knew just what to do and who to call.

Within half an hour the IV team was on the scene and took Ellie to the clean room to fix her plumbing and twenty minutes later Ellie was right back in her crib, sound asleep.

Ah the excitement of a baby on TPN. Never a dull moment

Visit from Gramma

My grandmother and uncle David visited us in the hospital today from New Hampshire. It was good to see them and show off Ellie to my grandmother. It was even better to let my grandmother hold her and see that she is a very happy little girl, something that gets lost in the translation of her condition. A dose of gramma should be part of every treatment program.

Generally she is very happy and comfortable like any other baby would be. In some ways she is happier since she doesn't get hungry because her gut hasn't gotten on line yet.

It is interesting to Abby and I what emphasis children's hospital puts on having Eleanor be a baby first and then letting the doctors and nurses fix what is broken in the meantime.

I think that the distiction fits well with what my sister told me early on: she is not a sick little girl, she is a little girl who is sick. A fine shade of gray to be sure, but it summarizes a difference in the way that Children's seems to go about her long term care.

They also frequently mention how things will be when she goes home, which is great to hear.

Ellie's Push Me-Pull You Gut

Ellie's first round of food had good results and not so good results.

She started food around 7:00 on Wednesday night. A syringe of breast milk got loaded into her feeding device which is like a very slow screw that depresses the plunger on the syringe a tiny bit at a time and delivers food to her stomach through her G-tube.

Abby chose to spend the night and by 11:00 Ellie had a full belly and vomited some of it for her mom. Abby tels me that they were both up until 2 Am and then they both got some sleep until Ellie began vomiting again at 6 this morning. Fortunately this was just in time for the doctors to show up and see that her bowels were moving as well and produced a real live baby poop for us. None of the skidmark stuff like we heard of last week, this was a big old dookie for Abby to clean up. A definite good sign.

So we have started the long road to getting Ellie fed and off of her TPN ( Total Perenteral Nutrition) bag. I think that last night was a good indication of what we ahve in front of us for the next while. Tiny steps forward, tiny steps backward and some long, long nights with a fussy baby.

On the bright side, this morning we met with the Child Life Specialist who told us about enrichment activities for us and Ellie here at Children's. It sounds like field trips are going to be encouraged and we are looking forward to taking her to walk in the hospital, and eventually even outside in the gardens.

The first baby steps

We got word from the doctor tonight that they are going to start giving Ellie breast milk in addition to her IV solution to see how her gut handles a tiny amount of food. She is going to begin tonight with only 2 cc's per hour which amounts to a very, very slow drip, but it is a start on the path to food and we will see how she does with this.

I took her on a field trip today to the radiology department to get new x-rays taken. With the gear in her room operating on batteries we can unplug her and walk around so that is good news, too. We see kids on this floor walking laps each day and a stroller would be good fun for her as well as her mom and I.

Changing Beds

Part of the move to Boston is moving Eleanor from the NICU with 18 kids in one room into a semi private room with 2 kids in one room. This is great for us because there is no longer limited access to Ellie and we can sit and just be with her without having to visit her. A fine shade of gray, but being able to eat dinner, talk on the phone and watch the Red Sox with her last night was great.

The downside of the semi private room is that without us in the room wih her it appears very lonlely and Abby and I were reluctant to leave her last night since the room was so lonely. Ellie doesn't seem to care one way or the other, but there was jjst no way that we were going to leave her last night. Since Abby is still on the mend from her C-section (a fact that we seem to forget every day), I sent her home to sleep in a bed at her sister's house and I took the first shift on the pull out.

All in all it wasn't that bad. It wasn't good either, but it wasn't bad. The alarms going off in the middle of the night will take some getting used to but once we get used to the fact that Ellie is doing well enough that she lost her heart and breathing monitor wires last night, we should be able to sleep more soundly.

For now, though, I am realizing why parents in the hosptial always look so haggard. In feel sorta like Merle right now, in fact.

I'm sure we will get comfortable enough to both go home at some point but for now we will alternate nights. Unless, of course, Abby needs to sleep again. Then I will take another one for the team.

At least I get to watch the Sox with my girl. Definitely something to be said for that.

Another in a string of very long days

Yesterday Eleanor was transferred from Yale-New Haven Hospital to Boston Children's Hospital where she has been enrolled in the Short Bowel Syndrome program.

Our day began in Ledyard, at home. On Monday evening the nurse told me that a Tuesday transfer was a possibility so Abby and I left home on Tuesday at 7 AM, getting to Yale just after 8 with a stop at Dunkin' Donuts (the official sponsor of the Ellie Brogan Treatment Program) for the usual breakfast of champions, a large coffee and two chocolate glazed donuts. Yeah, yeah, I know but I figure that I'll get Ellie's gut under control and then work on mine....

When we got to Yale the nurse told us that yes, Ellie was going to be transferred and would go at 12:30 by Ambulance with the Yale transport team.

Have you ever walked into a hospital and seen someone carrying a cooler and wondered what was in it? I always imagine either organs on ice or a severed head, but have learned that it probably isn't that interesting. Probably a dad with a cooler full of frozen breast milk because by 4:00 there we were in Boston, walking into the mammoth children's complex, cooler full of frozen breast milk in hand, looking for our baby.

Who had not made her triumphant arrival yet.

By 4:30 Ellie arrived with the Yale team including Joyce our medical savior from the day that Ellie was born who swooped in and packed her up to go to Yale. I told her that she didn't only help Ellie that day but coached us through a very rough time and that we appreciated it immensely. She gave me kiss on the cheek.

By 5 we Ellie's new doctors had both been in to see her and sit down to discuss her condition with us and what the plan of action was.

The doctors at Yale were great. Top notch doctors who knew tons about treating sick kids in general.

That being said, we are where we need to be for Ellie. So far each of the doctors, nurses, nurse practitioners and other staff that we have met are not only familiar with Ellie's problem, but speak about it on a level that we simply didn't get at Yale. Ellie's nurse last night old me that she sometimes loses perspecctive about how rare short gut is because she treats kids with short gut every day and sometimes goes a whole day treating nothing but short gut kids. This is where we want and need to be. No mystery about her G-tube, no inaccurate information about her condition or need for us to brief the staff. It is time to move forward and get my little girl out of this place.

Apparently one of the many wonderful powers of breast milk is that it has been shown to help short gut kids grow their super guts and help what is left of an intestine take on super powers. In the next day or so, we will begin the long slow process of feeding Eleanor and see how she does.

In the meantime, I am off to Yale again. Apparently they forgot to include Ellie's x-rays in her file and we can't proceed without them. Gib express is faster than FedEx.

Sure am glad that my iPod is all loaded up and the car adapter works so well.

Friends with Computer Skills

A friend of Abby's sent her this:

A Pit Stop along the Race Course

Abby and I took off from New Haven yesterday afternoon after spending a full day with Ellie for some time at home. It is still very hard to come home and face the 'nest' that we had made in anticipation of Eleanor coming home. It is sad to see the nursery all set up and dark.

It is even sadder for Abby and I to sit in our living room and realize that I had forgotten about Yaleand Eleanor for a minute there. Sometimes the hospital bubble seems like fantasy land and coming home separates us enough that I tune out. It isn't something that I am proud of but it happened.

We got a great email from a mom in AZ whose baby is short gut and she relayed her son's story to Abby which was a big help to both of us. What we are learning is that every case of short gut is a tiny bit different from every other one (where the gut is missing, how much is missing, how it was lost, etc), but there are similarities and hearing the story of this little boy made us more sure of what is ahead.

Sometimes it is easy for us (and the nurses and doctors, I think) to forget how much Ellie has in front of her in the coming months. Since she is so healthy other than her gut, you'd never suspect that she was sick or anticipated to be in the hospital for months to come.

I think that we make the preemie parents thankful that their kids will only be in the NICU for a few short weeks. When we say months (I use Labor Day as a reasonably hopeful target), the look on their faces is pure shock. I ahve had repeated conversations with a grandmother of a preemie who is early in the NICU acclimation period. She just can't believe what we have in front of us and kept telling me how brave and dtrong we are.

I felt like asking her: 'What else are we going to do? Roll up in a ball and hide? Run away to the hills and become hermits?'

She's our baby, duh.

Frogs!!

Here is another for those of you following Abby's games of 'Dress me up Ellie'.


Man those baby girl clothes are cute. 

Awake Time on Sunday

We are hitting Ellie's awake time more and more these days and it is great to see her up and at em and exploring with her eyes (as much as 14 day old babies can, anyway).

She is happy and is enjoying songs and poems from Shel Silverstein, which surprisingly wake her up and make her look around.

A little it of barf this AM but the surgeons weren't concerned by it. Babies barf, I guess.

Getting better at diaper time but still miss every now and then as Ellie pees all over everything. Ah, babies.... 

Showing off for the family

My sisters came to visit yesterday and each got two visits in with the Ellie. What they couldn't believe is how normal she is, looking like every other two week old baby that they have ever seen. Cuter than most, they tell me, but I think that they are biased towards the home team on that one...

I think that they thought that Abby and I had been posing her for pictures to make her look better than she is, but the truth is that she looks like she does in the pictures and video most of the time. she sleeps a lot but when she is awake she is perky and active which is very cool when we are there for her active times. Kate and Beth were there for bath time yesterday and diaper change time today, both highlights of Ellie's day and she was awake and fun for both of them.

Abby and I have set up camp here at the hospital today. we are handing ellie off to each other and trying out the new poses that the therpist suggested for Ellie to keep her from being in repetitive positions.

to Boston, To Boston.....

Abby and I spoke to the director of the SBS program at Children's Hospital in Boston today and he had great naswers to our list of questions (which Gib the dumbass left in the car but we managed to compose as we sat on the bed talking to Dr. Duggan on the speakerphone.

The ball is rolling on Ellie's transfer to Boston and it looks like she will be transferred sometime next week.

This will be a good step for Ellie to get into a comprehensive SBS treatment program that uses doctors, surgeons, nurses, nurse practitioners, nutitionists and pharmacists who deal with the patients in the SBS program and have expertise with this condition. This will also be a great improvement for Abby and I who will be near family and friends in Boston and the support that they can offer.

We are looking at months of treatment for Ellie and staying at RMH isn't very appealing to us for the long term. Abby's sister and brother-in-law in Wayland, MA (just outside of Boston) have offered to let us stay with them for a short while as we settle into the Children's situation. We are excited to join our first born child, Gus the Wonderdog, who has been there for a week or so already.

The doctors and staff at Yale (apart from Dr. Superwoman) have been wierd about Ellie's transfer. we're not sure whether they are offended that we are moving her from Yale, offended that we are moving her to Harvard, or simply that they will miss our little girl. Nonetheless, we have had to explain our switch to about a dozen people so far which is a pain for us.

So we have a change of scenery coming and a some changes in care. It will likely be hectic as we pick up and move and settle in again, but we hope that this will be it for a while.

GI tract 101

To go along witht he diagram of Ellie's external plumbing that I posted a while ago, I thought that it mightbe useful to include a diagram of what her plumbing should look like in side and where she is different.

Simply put Ellie is missing her intestine from the midway through the Jejunum through the Ileo-Cecal valve, including her appendix. No appendicitis is a positive side effect, I guess.

The surgeon replumbed her to make what is left of the jejunum connect to her colon, the express route for her dinner. The trick will be to teach her gut to slow down the express to make local stops and discharge its nutients before the colon, which does a different job than the small intestine. Fortunately, the doctors tell us that the small intestine can change its form and function to become a sort of super functioning intestine.

I've always wanted to know a super hero. Maybe Eliie will be Gut Girl, or Absorbo.....

Number 2

Houston we have POOP! The doctor just called us to report a skidmark the size of a quarter in Ellie's diaper. They also saw some contrast ( water soluable barium dye) in her colon left over from the study that they did two days ago. This means we have movement! No feed for now but this is great news and is definitely progress. POOP WE HAVE POOP!

another video clip

some days are better than others. This was a good one a few days ago:

Link

Charity

It is still odd for me to be the recipient of a charity.

We are supposed to be the ones who are donating and volunteering for charities, not on the recieving end of this, but in a quick turn, here we are, with the very well dressed Branford Women's Club coming in on Wednesday nights to cook dinner for us. We were late for dinner but it was still odd to have these folks who look like our neighbors coming in and cooking us dinner. I know that we are in a tough situation but it still feels strange.

I have compensated for this wierd feeling by asking to buy extra food or other stuff when I go to the grocery store and buying extra ice cream for the little kids who are around here. Ice cream fixes a lot of things and I think that it should be there whenever the kids who are living here want it. Hoodsie Cups for all!! $5.00 for a couple dozen ice creams is $$ well spent as far as I am concerned.

It is also wierd to be here as yuppies with polo shirts and a digital camera living in a charity house.

A strange dynamic to be sure, but I guess that we are the same as everyone else in the place in the only way that matters: our baby is down the block and home is a long way away.

G

We had the uncomfortable conversation this afternoon with Ellie's surgeon, Dr. Superwoman, about possibly transferring her to Boston Children's. We related that Boston would be much easier for us than New Haven because we have family and friends in the area but wnated to make sure that any step would be at least a sidestep and possibly and step forward for Ellie. She told us that she is certain that Boston Children's will be a good choice for Ellie and considering the legnthy time that she may be in the hospital, we need to do what is best for all of us, including ourselves.

She told us that the way that Children's manages their patients may be different that the way she manages Ellie as her primary physician which is very personal and gives us a go-to person for information. We told her that we are very happy with her and Yale and will judge our conversation with Children's very carefully.

As Dr. Superwoman goes away for 10 days, I am glad that we told her. It would horrible for her to come back and find that Ellie was gone. She is as personally attached as any doctor that I have met, and we will miss her if Ellie moves to Boston.

We heard from the doctors are Boston Children's yesterday by phone and it sounds like there may be a spot for Ellie in the Short Bowel Syndrome Program( link) at Children's and from the conversation yesterday we are encouraged. The doctor was very personable, giving us good feedback about Ellie's case (45 cm of small bowel is much better than say 25 or 30 cm, which he told me makes them cringe) and we have scheduled a time to talk Thursday or Friday to answer questions that Abby and I have before we think about arranging a transfer to Boston.

We are especially curious about the team approach in Boston that seems to have an integrated and dedicated team of doctors nurses and other professionals to deal with the SBS cases. Some times, it seems, at Yale that we are briefing the nurses on her relatively rare condition and are often the conduit for information between the surgery team who leads her care, and the neonatologist team who watches over her in the NICU. Being in a program with integrated staff would be great.

We are concerned about the new STEP surgery that they are doing in Boston and want to make sure that this surgery (which there is some debate about how effective it is) is a later course of action instead of a foregone conclusion for her treatment.

We want to check whether going to Children's will require that Ellie return to Children's for follow up care when she is released from the hospital. A trip to Boston for periodic follow up is okay, but if it needs to be weekly or more often, Boston might be tough.

But reagrdless of these questions, we wnat what is best for Ellie and make a decision based on wat is best for her. Talk about a heavy choice for a guy who can take weeks to buy shoes and hours to choose an ice cream flavor.

Ugh.

Awake and alert

Ellie is a lot more awake and alert these days and is starting to explore her face with her hands (good signs for kids with gut issues, the therapist tells us) but unfortunately her little baby fingernails are very sharp and needed filing. We set her up with the crib mirror while Abby filed them and she was great for 20 minutes, looking at the mirror. I couldn't resist a photo. 

We met with the occupational therpist today and had a long talk about Ellie and how she is doing in the hospital and some of theings that we cando to improve her development and avoid some of the pitfalls that happen to kids who spend a lot of time in the NICU. She showed us some positions to hold Ellie other than the crook of our arm that takes the pressure off the ack of her head. Apparently with their very soft heads, some babies can get flat heads so on to her side and belly she goes! She loves the side action and she and I spent a long time this AM with her on the side. Turns out she likes Johnny Cash as well as the others.

It is no surprise that the best advice from the therapist is to spend lots of time with her. Good for us that that was our plan, too. 

Mommy and Baby Time

Abby and Ellie are spending lots of time together and starting to spend time doing 'kangaroo time' with Ellie on Abby's bare belly. 

An experiment in video

Eating dinner with my mother and father tonight they told Abby and I that one thing that they wish is that people could see Ellie with her eyes open, since the redeye thing on my camera makes her squint and the pictures show her eyes closed. well they do open and I have some videos to prove it and, thanks to the power of some nice blog comments from someone that I don't think that I have ever met, I will try and set this up.

Try this link: http://www.youtube.com/watch?v=7_PsPURm2XY

good luck

A new room and a new set of nurses

Once again Ellie moved rooms in the NICU to one of the least intensive care rooms in the unit. Quite frankly, I liked the old room where the nurses doted on her and stayed within ten feet of her. She is, after all, my baby and she is still pretty sick with a gut that still hasn't functioned yet.

But she is stable and iis now in the 'feeding and growth room' as her murse, told us today. Yes you read that correctly, murse. There are 150 female nurses in the NICU and one male murse, named Jean. No I am not making this up. The only other names that would have been better would have been Pat, Terry, or Chris, but we have Jean, and he is watching Ellie tonight and is pretty good with her.

Ellie has been in the new roomfor only a few hours and Abby and I are both noticing that the less intensive care may equate with less intensive knowledge and nonchalance about her condition which is unnerving.

Today she had a diagnostic image taken of her gut after they gave her some barium dye to see how her bowels were working over some time. Well she seems to have Mom and Dad's reflux and barfed a good bunch of it while they were doing the imaging. No big deal. babies barf all the time and while the docs watched she was in good hands.

But when she started barfing again at 4:45, a few hours after her procedure and it was the same awful bilious green that we had seen in RI a lttle bit more than a week ago it was scary for Abby and I. It was also scary that I had to search to find our nurse and that he apparently had not had the thorough briefing that the nurses in the other rooms had gotten from their predecessors. Abby and I had to do some briefing before we got it taken care of. Not horribly scary but our first experience that was less than glowing with the NICU.

So we watch and wait for the dye to move.

A diagram of a (mostly) naked baby.

A lot of folks have asked about how Ellie is plumbed with her new shimmy accessories. As Abby changed Eleanor’s diaper last night I took a picture of her while she was between clothes to share with you and explain her tubes.

The tube coming out of her belly is her ‘G-tube’, that goes into her stomach. This is her the access point in and out of her belly. Right now the doctors are siphoning extra fluid from her stomach through this tube, but will eventually will be a tube through which she receives more traditional nutrition (breast milk, etc) in addition to her IV tubes.

The tube coming from her right foot is her central line, a more permanent version of and IV that is snaked up her leg and into a larger blood vessel near her hip. This is more durable than an IV and allows the doctirs to give her fluids that can’t go through an IV.

The wire on her chest are the monitors for her heart, and breathing. These cause us great angst when she cries because her heart rate goes through the roof and makes the monitor beep. The nurse on Sunday told us that they like crying babies:’Its good for their lungs.’ Bad for my heart though.

She also has an oxygen sensor that gets attached to different limbs throughout the day.

And thankfully, for now, that is it for her wiring diagram. Let’s hope it stays this way for a while.

An update from Dr. Superwoman

Abby mother and my parents came to NH today for a visit and to see Ellie in her new digs. My mother was reassured by seeing Ellie open her eyes and look around, something that apparently doesn't make it in the photos (damned red eye reducer scares her away I guess) but we see in the video clips that are on my laptop but for some reason can't get onto the blog. Trust me she looks around a lot and charms the nurses and doctors who come to visit her. They then tell her proud papa how cute she is and how great she is doing. So I got that going for me. Which is nice.

Then we met with the surgeon who told us how pleased she is with Ellie's progress, with the exception of the much anticipated BM. She told us all sorts of good stuff that made us feel better including that there is a possibility that Ellie's G-tube may not be there forever and that as far as she has read, Ellie's problem is likely not genetic.

Tomorrow or Wednesday she will take Ellie to the radiography department and use the high tech dyes and scans like those that her uncle John worked on at Generous Electric to follow her gut and see what the location of her troops is and why they haven't crossed the border.

Hopefully, if all goes well they may try to give her some of the endless store of breast milk that has been accumulating in the freezer by the end of week. Then we begin the long process of teaching her newly plumbed gut how to be a gut.

It was a positive update and we are still enamoured with Dr. Superwoman.

Must learn patience, young Skywalker. Patience.

#7 with a bullet!

A couple of folks have asked me for diagrams of the gastrointestinal tract and where Ellie has tubes and wires. So I just went to google and typed in infant short gut to see what diagrams I could find. well what did I find at #7 on page one? My blog!

Which made me think: do I have a responsibility to make this something more than what it is or can I just do what I'm doing? Since I have only the expertise that I have absorbed from Ellie's doctors I think that I will keep on going as is. The doctor told us after Ellie's surgery that we will eventually become experts on this and I will share what I know but for now it is what it is.

Visitors

We visited Ellie this morning for a short visit before the doctors kicked us out to talk about the other kids in the room. Abby is heading back for the afternoon and I will head over as soon as I do some stuff here. It is a big day becauee my parents are comign in from Maine to visit Ellie for the first time since the Westerly Hospital more than a week ago where my mom got to heold her shortly before the shit hit the fan, or more appropriately, the bile hit my lap.

My dad has been having a tough time with a sick baby, just like the rest of us, but for some reason it seems that this is tougher for him than even Abby and I. For example, he couldn't even read this blog until a few days ago when I had given him some fresh news over the phone to prime the pump. But now he is getting better and likes the pictures. I think that having him see that the NICU isn't a horrible place will help him even more. It will be good to see my folks today.

It seems strange, and we may be shellshocked from immersion, that folks that are a distance from our situation in New Haven are often having a tougher time with this than we are. I think that it is because we see Ellie a couple of times a day and hear her coo, hear her scream with her good set of lungs, and get the contact with herthat we have begun to think that things aren't that bad. Things are tough and it bums us out to think of where we could be right now, but all in all it isn't so bad. I may think differently if Eleanor is still in the hospital a month or six months from now, but for right now it a'in't all bad.

The other thing that makes us feel fortunate is meeting other parents here at the RMH and in the NICU whose children are much sicker that Ellie right now. A bunch of the preemies can''t be touched or held. That would be a tough one to handle. We met a couple who have a baby with spina bifida and had surgery on day one but can't be held for 10 days. It would be much tougher without the cuddle time and I am very thankful that we can spend as much great time with her as we do.

Still waiting to hear the update from this morning's doctor visit. We hope that things are still moving forward and possible out of the NICU. Our toes and fingers are crossed.

Look Ma, no tubes!!

Our afternoon visit today was highlighted by the doctors removing Eleanor's naso-gastric tube, the tube that was suctioned a few times a day to get excess or the wrong fluid from her stomach:





















The only fluid coming out of her belly now is through her g-tube, the more permanent tube that was installed in her belly during the surgery a week ago...

Paring down the tubes is a good thing, and a nice side effect is that the newest batch of pictures won't have the green tube in her nose. For Ellie, this means that she can breathe out of both nostrils and doesn't have a tube pulling on her face. She is very happy to be free os these, it seems:




















What a week it has been. Thinking about our lives a week ago makes me nauseous and thinking back to a week to a week and day ago before Ellie arrived, makes me a little bit sad. But we have hit our stride here and are settling in for the long haul.

We heard from the doctors at Children's Hospital in Boston today. Yes, on Easter afternoon one of the heads of the SBS Program contacted me and told me that they are most concerned about getting Eleanor stable and through the recovery after her surgery but will be happy to talk to us and meet with us to discuss her treatment. It was amazing to me that he called me this afternoon from his vacation, but Abby pointed out that he must realize the state of parents of a newborn in our situation and doesn't want us to be out there waiting too long. Some people out there just amaze me in the way that they look out for others.

we will talk to Children's later this week and set up a time to meet.

Home Sweet (temporary) Home

Abby and I spent a great afternoon with Ellie and the packed up to head back to our house. It was very strange to drive home after a week away that was filled with about a year's worth of activity and to leave our little girl behind, even for a night in the hands of some great nurses at Yale.

Being home is strange, and our dog Gus isn't quite sure what to make of us. I know that dogs don't have human emotions but I swear that he resents us and knows that we are somewhere else caring for somebody else. Still he is the greatest dog ever. I miss him when we are away but know that he will be happy with his foster home in Massachusetts next week with his new best friend Nicky, another black lab.

It is nice to be here again. I would be nicer to be here with Ellie, but we hope that will come soon. Our yard has popped for spring and there are flowers and plants everywhere. apparently the weather outside has been nice this last week? My weather was a climate controlled and being out under stars was great tonight. I never knew how great our house was until we couldn't be here.

It has been a very busy night for me. I filed taxes. Damn Turbo Tax got me for an extra $30 to efile and another $30 to get my tiny refund direct deposited after I had spent $50 on the program. Bastards. Better than H&R Block though. Never heard of anyone having luck with them. I guess that you get what you pay for when a temp does your taxes.

I paid every bill in the stack and had a burger with Abby and her mother for her mother's birthday. I even had a Heineken, but felt wierd about it because part of me thought that I should be in New Haven with Ellie.

I sat down to play with itunes. The nurses in room 5 keep a small radio/CD player going during the day and I sing along as best I can to the assortment of music that comes along. I swear if you squint, I sound just like every singer on the radio. Ellie agrees. I burned a couple of CD's to take with us tomorrow and take control of Ellie's musical education. The quiet CSN, Grateful Dead, Skynryd, and some other stuff.

Now I am exhausted. Gus gets to sleep in the valley between us tonight. Nothing like sharing a bed with your dog.

Except, I imagine, taking a nap with your baby daughter on the couch in the afternoon.

One of these days.

Waiting Rooms

Fortunately Abby and I have had to spend hardly any time in waiting rooms during Ellie's care.

On Sunday, as we waited for Abby to be transferred to Yale, my mother, brother, and I had to spend some hours in the waiting room at Yale. If you have the chance, find another place to wait.

The policy in the NICU is that only one visitor is allowed at a time and must be accompanied by a parent during the visit. This leads to shuttling of visitors in to see the baby and a bunch of folks waiting, a lot. Since some of the kids are in the NICU for a long time, the visitors have been in this room a lot and are not shy about getting comfortable. Very comfortable.

At one time last Sunday in a room that is 10 by 20 feet there were:

3 people on cell phones, speaking three different languages,
3 crying babies and their families,
1 woman eating an enourmous portion of Chinese food while talking on a cell phone. In a small room we all could taste the fried rice and probably could have survived on the food falling from her mouth as she spoke, and
One drunk guy who decided that he needs to hear the final round of the Masters over the room full of people and maxxed out the volume. I am still wondering what is there to hear in golf?

Fortunately Abby was admitted soon after the volume went up and we got out. If you are in a hospital for a long while, look for alternate waitng rooms. They are there and worth your time to find them.

Infant and Adult Enrichment Activities

Our afternoon visit started with finding Ellie sitting up in a bouncy seat, wrapped in the blanket her aunt knit for her with a mirror set up in front of her to keep her entertained.

A bouncy seat! More normal newborn stuff like the roomful of stuff we have at home the the nurses continue to tell us that she will use when she comes home with us. Gotta love that attitude.

The nurses have been great about doing this kind of stuff for her as she gets better and even did some arts and crafts with her feet to make and Easter card for us and even dress up in adress that her great grandmother sent her that makes her look like a tulip:




















Eleanor is doing well and there is talk that she may be transferred soon to the long term convalescent floor of the hospital if she continues to show that she doesn't need the care provided by an ICU. We have been truly fortunate that she has progressed this quickly, but are aware that backward steps are coming sooner or later. The doctors continue to remind us that treatment for her condition is a marathon and not a sprint, but hey, there's nothing wrong with getting a quick start, right?

Speaking of home, we are planning to go home tonight for the first time in a week to visit Gus the dog, pay some bills, file our taxes and maybe sleep in our bed for the night before coming back in the morning. It seems like months since we have been home and wonder what flowers will have come out while we have been away.

An Early Morning Visit

We got up and over to the hospital ealry this morning and settled in for more than an hour of quality time with Eleanor. She is very happy and the fluid coming from her G-tube (connected to the lower portion of her stomach is a good color and the fluid from the Nasal Gastric tube is clear. Good signs that things are progressing. No bowel movements yet but the nurses tell us that her bowels are making noise so let the movement begin! I keep thinking of Kramer on Seinfeld when he was constipated and tells Jerry 'I'm getting no..... peristalsis!'. Ellie's mother and I are well in tune with our own peristalsis so if that has anything to do with it, her troops should be moving soon.

I am contacting Boston Children's Hospital today about getting a second opinion on Ellie's treatment. There is a center for treatment of Short Bowel Syndrome at Children's and although we are very pleased with how things are going at Yale, a second opinion will help us understand the situation and potential other options. Hopefully we will hear from them soon.

I have always wanted to live in Boston. This would be a heck of a way to get there.

And we keep on moving up

We got great news today as we went after lunch to visit Ellie. She has been upgraded!

With this come a change of scenery from room number 4, the Intensive Care Nursery room with the newest cases and the least stable babies, to room number 5, the Transitional Nursery where the babies move before moving down the line into rooms 1 and 2. Yes, the rooms are nonsequentially numbered, but who cares? It is another step down the road. We have many many steps ahead of us that will be baby steps at best, but to have her one step more stable is very comforting.

So we visited her in room five and met her nurses du jour (there are ~150 nurses in the NICU at Yale) who made sure that we each had some quality time with her and then insited that we stay to give her a bath, change her diapers, and wrap her up in freash clothes and a nice warm blanket made be Eleanor's loving aunt. Giddy up.




















Then, to be super funny, Eleanor decided to flip her dad the bird so at least she has a sense of humor about the whole thing:




















We had a nice visit with Abby sister and Brother in law this afternoon and showed Ellie off to Jennifer, Fred and Alex Leichter, although people under 16 are not allowed in the nursery regardless of how mature they are so Claire had to wait outside. Bummer, but it is in the name of keeping the babies healthy.

Still sucking on the Sox plug like it is going out of style.

The New Digs

We spent the morning settling into the RMH (Ronald McDonald House). after a very long day yesterday, we resisted the urge to go and see Ellie during the pre 8 AM time and slept a bit to recharge out batteries. Abby settled, I found the grocery store, and we made camp in our humble little room, which the staff has not stopped aplogizing for since we got here, so we must be at the bottom of the barrel.

IT ain't pretty but it does the trick for us, since if we are spending too much time here, we get antsy to see Ellie anyway. After living on the boat in Florida, Abby and I appreciate any place where we can stand up and pass each other without having one of us sit down.

Downstairs there is a great common floor with a huge kitchen that has two of everything, a fridge stocked with common items for general use and fridges and freezers for individual items. There is plenty of coffee (The new Newman's Own McDonald's coffee is as tasty as they say) and bagels and cereal for us each morning that allows us to think about other things than breakfast, which is very nice.

There are sitting rooms that don't see much use and a playroom that see lots of use from the families that are here with us. I am frazzled taking care of us and can't imagine doing this with two or even three little ones in tow like some of the folks that I met this AM. Talk about strong.

we are off to see Ellie in a minute. She was pretty fussy when we were there last night. Behaving like a 5 day old baby should, I guess.

Moving On Up, Round Two

Today ellie moved into a crib, but we also moved as we had to check out of the hospital this afternoon. Usually leaving the hospital is a good thing and Abby is recovering as well as can be expected.

Somehow leaving the safety of the nurses who knew our names (sort of like Cheers. With Percocet.) and kept great care of Abby seems like someone took away the safety net and we are one step closer to this being our new real life.

But by far the worst part of the afternoon was taking the car seat out of the car and putting it in the trunk and actually driving away from the hospital, without a baby, and leaving our little girl behind us. Even tough we are probably only about 100 feet futther from the NICU as the crow flies, it was very tough for both of us to leave (we returned as fast as we could tonight for an evening session).

You are supposed to leave with your baby, mom exhausted and dad driving as carefully as he ever has. But we weren't and it sucked. Just plain sucked. Abby cried in the back seat, I cried in the front seat and we drove the three blocks to Ronald McDonald House. We must have looked like ten pounds of shit in a five pound bag as well rolled into the RMH, as we have learned the pros at the hospital call the Ronald McDonald House. I thing Big Mac Shack is better.

But we have settled, figured out how to get to the hospital 24/7 at the drop of a hat (free shuttle from the Yale cops), where to get a coke (25 cents in the kitchen. Thanks, Cokefor subsidizing my caffeine needs), and found that NESN comes in loud and clear in our humble little room. What else could we ask for to get by?

I will tell you about the RMH tomorrow, but by all indications, it is a great place run by some very dedicated folks.

A dip in our emotional rollercoaster

We had a very emotional afternoon today. I warned myself and anyone who is reading this at the outset that I was going to try and write about all of the aspects of our experiences, including the emotional and even spiritual side of things. Well today was a day that added a new element

Today Ellie was baptized. Even though I am not religious at all and Abby is a one time Episcopal, the chaplain did a great job of recognizing the situation that we were in and added just enough spiritual stuff to make us both really appreciate the little NICU ceremony. This had two effects on Abby and I:

First it made Eleanor very real to us to have an official person pronounce her name out loud. We get weepy whenever we say her name to each other but this was different and really hit us both hard. I think that it woke us up from what seems like a movie (that I'd like to ship back to Netflix immediately thank you very much!) and makes us realize that this is our lives, we are the stars of this story, and we have no idea how it will turn out, even in the next small chapter that will play out tomorrow.

Second, it made us revisit the fact that despite her cooing and cuddling in the past few days, Ellie is a sick little girl and has all of that uncertainty attached to her tough situation. It's tough to say, but is the reality of our situation.

With things the way that they are, we are taking every opportunity that we have to go in and see her, hold her (the nurses in the NICU have been really great in encouraging us to pick her up and get lots of contact with her), sing her songs (the NICU versions of My Old Man's and Anthropologist, and the entire Lynryd Skynrd Second Helping are destined to be all time classics).

Abby spent an hour each of the last two nights holding her, skin to skin and it has done wonders for both of them. We can watch Eleanor's heart rate slow and watch Abby's eyelids droop. Good medicine for both of them.

A whole lot of information

One of the amazing things that has happened in the last few days has been the number of people who either know or are related to or have used pediatric gastroenterologists or pediatric surgeons. For example, Abby's stepmother told us that he uncle just happens to be the Micheal Jordan of pediatric surgery and literally wrote the book on the subject. And that is just one of the connections that has been made for us.

Right now we are still very much overwhelmed by the issue and have successfully managed to avoid Googlemania which could consume hours of our time reading information that is at best questionable and could be distracting from the information that our great surgeon is giving us. Even worse, it could give us outdated information about Eleanor's condition (disease/defect/syndrome?) which is overly grim when the info comes from just a few years ago when her situation would have had a much different outlook.

We will most likely talk to other doctors in the near future to get second and third opinions but for now we are letting things stabilize and letting Ellie spend as much time with her Mom and me as possible.

Moving on up

Today is moving day and not just for Abby and I who will move down the block to the very fancy looking Ronald McDonald House, but also for Ellie who we helped move from her very scary looking isolet to a much more cozy and normal looking crib. A small step for her but a big boost to our morale to see our baby out of 'the bubble'. we can even talk to her without using the portholes!! My connection is lousy right now but I will add photos of our new digs later.

Now cheering for the Boston Red Sox......

One of my favorite things to do while talking to Eleanor through the 'portholes' in her isolet (the tiny incubator/crib/bubble that babies live in while they are in the ealry stages of the NICU) is to tell her the latest news from the Red Sox game from the night before that I see only on a glimpse of sportsCenter each morning while we get ready to visit Ellie. I will also tell her my opinions on the controversies of the day-Pappelbon vs Foulke, Big Papi's new contract etc.

Well surprise surprise last night when one of Abby's friends from work arrived with a pacifier/plug/nuk/binky with a bright new Red Sox logo on it.

Well imagine my surprise when we wnet down to the NICU tonight to say goodnight(which lasted 2 1/2 hours) and the nurse had the new plug perched on Ellie's mouth and supported by a tiny stuffed animal.

"She loves that thing and gets fussy if it falls out of her mouth," the nurse told us, "propping it up is the only way to keep her happy."

So I guess here in the heart of the Yankees portion of CT we have a new tiny Sox fan, a fact that apparently has spread around the NICU and elicited some comments from doctors we don't even know as we walked in tonight who joked that they don't treat babies who root for the Sox.
The rivalry even extends into the Neo-Natal world. Imagine that.

Dad and his little girl

We all had a good day today. Abby and I visited Eleanor a few times and after lunch Eleanor and I had a good round of quality time, sitting in a comfortable chair for a little over two hours. She is alert and happy when I hold her and likes to coo when she is happy. As we sit together it is easy to get lulled into a sense of security in her stability. I know that this is foolish and that some setbacks are coming our way but it is happening nevertheless.


We met with our doctor while we were in the NICU as well. She is a wizard and we Abby and I both think the world of her. She didn't flinch yesterday when we asked the question of whether Yale is the best place for Eleanor, and even encouraged us to explore other options for her care, assuring us that Yale is oing everything that other centers are doing.

This is a bridge that we will cross later.

Lots of support

we are discovering, literally by the minute, that there is a temeddous amount of support for us around the hospital and that there are also a surprising number of families that are in a similar situation to Abby and I with an infant or child in the hospital for a long time, what I learned the other day are called NICU parents.

I've never quite understood what social workers do. I think that this is because I never really needed a lot of help. They were always the people who helped other people. But now that I need the help, I am coming to understand the great stuff that they do. we finally met with the hospital's social worker yesterday and she spent about an hour getting to know us and what we were all about and how we were handling things. I guess that it is my Yankee side that keeps me away from the 'touchy feely' kind of people, but this woman cut right through that and let us know that she was there for us and had a bunch of great things to help us cope during Ellie's treatment. She made it very clear that she is our advocate to get what we need so we can concentrate on our baby.

We just found out that there is a bed for us at the New Haven Ronald McDonald House, another one of those organizations that I had heard of but never quite understood. I will never look at a Big Mac the same way again. There is a bed for us, 2 blocks from the hospital, that is ours for as long as we need it. A shuttle will pick us up and drop us off at the hospital and we can park for free. It is almost as if someone said: what do parents of sick kids need to be near their kids? and then they did it. Abby will check out of the hospital Thursday afternoon and we will move over there. Humble accomodations but it will make things lots easier for us.

Go buy a Big Mac and fries with a good conscience today.

A new normal

We are quickly discovering that normal has a new meaning for us, our family and everyone in the hospital. We knew that having a baby would be different for usand our lives but the hospiatl normal is a different thing altogether. In a few short days we have managed to establish a routine which has made everything that we deal with much more manageable and combines time for us with as much time with ellie as we can and some time to see and talk to friends and family.

We go to visit Ellie first thing in the morning, around 7.

This morning we woke her up and harrassed to to make her cry a just a bit. Believe it or not it was great to hear her cry this morning after so many days of no sound and lethargy following the anesthesia. The nurses are great for us and today offered to let Abby change a diaper for the first time. with a little bit of fumbling she managed to maneuver through the portholes in ellie's little isolet and switch out out one very wet diaper for a clean and dry one. The nurses even put her in a cute little pink sweater. I will add a picture when the digital gets charged up again.

from 8-11 each morning the doctors do their rounds in the NICU and we have to leave. This is nice for us because it forces us to have some down time for the morning, catch up on the many messages and emails that have come flowing in from literally around the world (hi to everyone in Kabul, Paddy).

around noon we go back to visit Ellie and check in for a minute and have spent the last few days taking some visitors down to the NICU to see her. Yesterday we had visitors from about 3 until 8 or so. Never a dull moment is a good way for an afternoon to go.

After dinner, we take some time with each other, make a nice long evening visit to see Ellie and say good night.

even though this is a long way from the dream situation, it is becoming normal for us. There are still a bunch of hiccups along the way each day, including when abby read the blog for the first time yesterday, or the first time that I tried to read anything from it to her out loud, Periodic fits of crying are the norm, but we are getting in the groove of this new kind of lifestyle.

A good day for us today

Today was a good day for Abby, Eleanor and I.

First off, the ventilator tube was removed from Ellie's mouth which ket us get a good look at her face and even hear her make noises for the first time because the ventilator blocked her vocal cords.
















second, when Abby and went for a our noon visit to the ICU, the nurse asked Abby if she would like to hold the baby. Hallelujah! Good timing, Joyce! If ever there was a mother in need of some quality time with her baby it was Abby, this morning, in that ICU. The great nurse unhooked the cords and tubes that are still connected to Ellie and wrapped her up in a nice soft blanket. for a minute there we could forget the problems that she had and we just enjoyed a cooing little baby girl for about an hour.

Welcome to Yankee Stadium

Although it kills me to say it and even more to write it for the world to see, I told a friend of my brother's a while back when he was considering job offers to go and play for the Yankees, the best of the best. Let me tell you, Yale-New Haven Hospital Children's Hospital is Yankee Stadium to me right now. From the orderlies to the nurses to the doctors, everyone in the place is obviously a seasoned professional at both what they do (clean the floors, deliver lunch, operate on 18 hour old babies) but also how they do it, with a smile and a tone that comforts us and lets us know that we (this includes our families and friends who have been great) are not alone in this process although we are feeling that way right now.

Eleanor was operated on at the ripe old age of 18 hours on Sunday, April 9th.

Very briefly, what the surgeons found is that she was born without a significant portion of her small intestine and had essentially an open tube coming from the top of her digestive tract and an open tube coming from the lower portion of her bowel. Only about 15% of her small intestine is in tact.

The doctors essentially replumbed her bowel and connected the loose ends to make a continuous tube from mouth onward. What this means for long term recovery is uncertain but the best the doctors can tell us is that she will be here at Yale for at least a month and maybe longer. She may need care for her whole life and may never function 'normally'. My mom asked me for an example of who functions normally and I laughed through my tears that night.

She recovered in the Baby Intensive Care Unit the following day and we were allowed to visit her as she recovered, even touching her and taking pictures:
Seeing a baby with tubes and wires was a shock for me but through all of the wires it was till my daughter (that is till taking time to say smoothly, by the way).

She would squirm and wiggle for us when we would tickle her toes and hands and even think about opening her eyes every now and then, but was still very sleepy from anaesthesia and pain meds, but the surgery was a success.

A New baby girl

Let me give you a brief summary of what got us here to this point, a whirlwind few days.

My wife Abby was due to deliver our first baby (we didn't ask about the sex to be fun and piss off my mom) on May 9th. On april 7 she had her regularly scheduled ob appt and it went just fine and we booked an appt for a week later. Well, the ob mst have ht the magic button because she went into labor at 1 the next morning and by 10 we were firmly in place in the Westerly, RI hospital for the long haul. After 24 hours of labor, Abby went in for a routine c-section (if surgery is ever routine) and at 1:45 AM on Sunday, March 9 we met our baby girl (Abby was ure that it was a boy and even asked us to double check the gender when she was delivered). After being cleaned up, wrapped up, and Abby got sewed up, we had a bundle of baby to contemplate and figure out as we sat in our hospital room and even had a chance to get my parents out of the waiting room at 2:15 in the morning (my Dad was a stiff sore guy by then) to come in and see Eleanor.



















We were bewildered about what to do with this baby and concerned that she wasn't crying, wasn't giving us hell or, for that matter, wasn't looking like she was breathing all that much. We even asked the nurse how to tell if she was breathing and she showed us some techniques to stimulate Eleanor to yawmn, wiggle or twitch to show us that she was okay.

We found out soon after this why she was being so quiet when she threw up first on me and then in her bassinet. We are not talking baout baby throw up but thick greem stuff that just was plain old scary. The first time that it happened, I was holding her and ran down the hallway with Ellie in my hands saying to myself 'don't drop the baby, don't drop the baby...' The nurses vacuumed out her stomach and sent her back to our room, telling me that it was most likely muconium (sp?) that she had swallowed in the womb. The second time the nurse knew that something was wrong and took Eleanor from our room to the small nursery in the maternity ward where the kept her over the night.

In the morning we were awakened by our obsttrician a short three hours after we last saw him. He briefed us on a few possibilities that could cause this and that most likely, eleanor would need to go to a more advanced hospital for further care, either Providence or New Haven's Yale hospital as soon as they could arrange for her to be transported to one of these hospitals.

At 10 AM the crackerjack team from Yale arrived with their specially equipped super baby transporting van and off she went, packed up tight as could be in a portable incubator.

Let me tell you that seeing your new little girl packed up for shipping in a box that I have only seen in E.T. was more than I could handle. we were supposed to be lounging in the maternity ward, fumbling over how to change a diaper and me getting it on backwards. Instead our little girl was on board with the superfriends for points west.

A new tool for a wide range of folks

Welcome to my new blog that I have created, now that Ii have something write about, my new daughter, Eleanor Jane Brogan, who was born just under 72 hours ago but has seen more than I have seen in my 32 years. You see , Eleanor was born without a significant portion of her intestine (hence the name of the blog after the medical condition which she is dealing with). It looks as though she will be facing many weeks, months or years or treatment for this and as my wife and I accompany her through this, I wanted to use the power of the blog (something that I never understood until yesterday why people use them) to share information and pictures with family, friends and other folks who may find their way to my bit the world. I am finding that as we navigate our way through this, I am also feeling at different times frustrated, sad, happy, loved, loving, angry, jealous and afraid. I am going to do my best to not hold any of this back as I experience it and share some of the ups and owns of the rollercoaster ride with whomever sees fit to spend the time to read this. I am doing this first and foremost for me as an actual diary but feel fine with others reading this, including my grandmother, mother and wife. So here goes nothing.