Friday, April 27, 2007
And if you feel like voting for Ellie's blog just click on the link that is in the right hand column and vote. I think you have to sign up to vote, but it only takes a second. Yahoo Ellie's famous!
Wednesday, April 25, 2007
We chose to move Ellie's care to Children's Hospital Boston because they have a short bowel clinic. The idea of going somewhere that truly understood what we were dealing with was very comforting.
We also made the decision to come to Boston because my sister had offered us a place to stay. By this time we had spent over 2 weeks in the Ronald McDonald house, and were just about to loose our minds. The RMH gave us a room within walking distance of the Yale Medical, and that was great. But it was had to live there. It is hard enough to deal with you own emotions and confusion, but it is also very hard to watch other families do the same thing but in VERY different ways. We were really looking forward to staying with family, and enjoying their company and support
The move to Boston had the biggest impact on Ellie's health, because Boston equaled Omegaven. We know short gut children Ellie's age who have required multi-organ transplants to save their lives because they did not have access to Omegaven until it was too late. We came to Children's for the short bowel clinic, but now we will never leave because of Omegaven.
Sometimes I feel like Fresenius should hire me to sell their drug. I would like to stand outside every children's hospital with a banner and a bull horn to let all the parents know about Omegaven and what it can do. I would like to travel back in time to one year ago today to all those parents that we left in the NICU at Yale and convince them to come to Boston with us. It breaks my heart to think about where some of those kids must be today. We have said it time and time again, we credit Omegaven for saving our daughter's life. Thank you Kathy and thank you Dr. Puder.
So, now we have a beautiful healthy little girl. She doesn't eat as much as she should, but she doing well anyway. She is walking fully on her own now, and if I try to help she usually pushes my hand away. As much as we try to keep her clean her favorite place is still the dirty dog bed. She sneaks in there as frequently as she can, past almost any barrier that we erect. We know that she has managed to get in the bed by hearing her giggles and squeals. I found her in there the other day and had to take a picture before I yanked her out.
We are very happy here in Boston and are puzzled by what our life could have been like if Ellie was born with everything intact. We would have continued on as normal and we would have taken everything for granted. We never would have known how great it is to raise a child close to family. We never would have the chance to see how great our friends and families are in a time of crisis. We never would have gotten the chance to build new relationships and grow much closer with many members of our families. We never would have known how great a city Boston is and how much fun it is to explore Wellesley with a jogging stroller or baby backpack. And even though I miss my job, I never would have known how great it is to be able to spend everyday watching your child discover her world, the dog bed or the one kitchen cabinet that is filled with baby friendly Tupperware.
I can't help but think that maybe this was just meant to be.
Monday, April 23, 2007
Everything went fine, we got her her shots (3) but other than that, let's just say that it was educational.
It started with the nurse bringing us into to exam room and asking us very normally to strip Ellie to her diaper to be weighed. Abby and I rolled our eyes because we could tell the woman what Ellie weighed within 100 grams (3-4 ounces) and because we knew that the woman had no idea what was 'under the hood'.
I've got to hand it to her, she was quite calm when she saw the plumbing, but we could both tell that she was a bit alarmed by the whole thing. (by the way, we would have been 80 grams off on our estimate of her weight, which is 9.56 kg, 50th percentile)
The nurse practitioner was a similar case and honestly, I think that we overwhelmed her when she asked for information about Ellie. We overwhelmed her both in the depth of our answers as she struggled to take notes on what we told her and also in the fact that she had literally nothing to offer to us for advice about Ellie. But I guess she felt that we were there and that she needed to do something. Oh well.
One interesting thing we did learn is that Ellie has the enormous cranium that comes from both Abby and I. She is in the 50th percentile for weight, 75th for height and 97+ for head circumference!
Look at the big brain on Brogan! It's like an orange on a toothpick!
She told us that considering the huge melons on her folks (and grandparents) that she was probably fulfilling her genetic destiny but that we should maybe thing about having her thyroid checked. Another thing to think about..... we'll add that test to the next blood draw at Children's but didn't want to stick her again after three pokes today.
After that it was a day for enjoying the sun and letting the girl catch up on her outside time:
I am biased but man what a cute baby? These pictures really make us realize what a funny looking baby she was when she was very young.
Everyone was very nice to us and told us that she was beautiful.
I am flying solo tonight while Abby goes out for a friend's birthday. Ellie was out by 7:20 tonight with the post immunization Tylenol. It doesn't have the full narc effect that it used to have but it still does a good job.
I am still terrified to be doing everything by myself when Abby is out. Honestly terrified by the what ifs. It is all I can do to keep myself from checking on her every five minutes.
You would think that this would get easier but the doubt is still there.
Oh well better than not giving a shit.
Sunday, April 22, 2007
We are enjoying the sun and starting to make up for a lost summer of baby fun. Ellie loves the trips and sleeps like a rock when we get home which is great for Abby and I.
So does Gus after about 50 trips into the pond to get the ball:
Friday, April 20, 2007
We have tried very hard to keep her from climbing them until she had very good balance and yesterday we let her roam to the bottom of the stairs to see what she would do. Like a fish to water, this is honestly her first trip up the stairs:
Now the trouble is keeping her away from them. Last night she made a dozen trips up. this morning she started out with a few trips to warm up, and then throws a few in for fun along the way.
All of this activity caused Abby and I bit of distress yesterday evening when I picked her up and she was all sweaty. Sweaty body, sweaty little feet in her little girly shoes. Sweaty kids with central lines are a red flag for infection. Then we figured out that she was just sweaty from her workout. Gotta get her a headband.
She can't go down yet and tries to go head first which ends up with her 'ass over teakettle' as my dad says, but we will teach her soon enough.
It is neat to see her do these things even with all of the hardware on her belly. She slides along the stairs right over her ostomy bag without a hitch. A good onesie makes a big difference but I think that she doesn't know any different and wants to explore.
Wednesday, April 18, 2007
We are continuing to manipulate what Ellie eats and the drugs that she takes to boost what she absorbs in her small bowel and reduce what comes out of her ostomy. This is in hopes of getting her food to work for her and also to manage her hydration and electrolyte levels
The problem is that most days more comes out of her ostomy that she eats. This doesn’t make sense at the very basic level- what goes in should come out. The physiology of the upper part of her small bowel complicates things however when it puts a large amount of fluid into her bowel to help the food be digested. In a normal situation this fluid would then be absorbed by her large bowel. With an ostomy, most of the fluid goes into the bag and is lost which equals a net loss of fluid, salts and other chemicals.
We have added solid foods which are known to slow things down, tried drugs like immodium (which constipated her and slowed her daily poops down to every four days), and also manipulated her feeding rate. None of these have significantly decreased the amount of ostomy ‘output’. Some have increased it.
Which brings us back to the question of whether the food is the cause of the ostomy output or whether it is independent of the feedings.
Fortunately all signs are showing that Ellie’s hydration and electrolytes are within a good range. She is happy and pink skinned and drools a lot, all good signs. One possibly bad sign was that her weight went down over the last four days, the first time that that has happened other than surgery days it is only 150 grams but that is a big deal for us these days.
We are waiting on a urine test to give us the definitive answer about her ‘lytes but are only a bit worried in the meantime.
On goes the experiment in feeding the girl. Something makes me think that it will go on forever.
Saturday, April 14, 2007
Now that she can see you when you drive she likes to talk to you about her day. I can't understand anything she says, but it all sounds very important. She is also very helpful when Gib is doing the laundry,(yes Gib does all the laundry, now who's the saint?) she likes to wait until you have all the clothes folded and in the basket to go up stairs. Then she slowly unpacks the whole basket, making sure that nothing is folded when she is done.
All in all doing well. I have my first soccer game of the season tomorrow so I doubt that I will be doing well after that, but oh well. We were also hoping that Ellie would get to see her first Boston Marathon on Monday as it runs right by our house, but that little nor' easter that is on it's way might put a hitch in that plan. We will see.
Sunday, April 08, 2007
Quite honestly, there was a time when neither Abby nor I thought that we would get here. There is a little trick that we learned in the NICU at Yale about hand washing that says to sing "Happy Birthday" while you was your hands and by the time you are done, you will have clean hands. This became a ritual for me that I hold onto today and every time I wash I think about getting Ellie to this goal.
Today, the Happy Birthday song has a much better meaning because we finally made it to a year. (LINK)
Along the way in the past year we have had some truly amazing experiences and seen some staggering amounts of other things. To get to a first birthday with a healthy short gut baby is a big milestone.
In the spirit of the Harpers Index, we have come up with a list of other numbers that we have experienced:
Short Gut Baby by the Numbers:
1- NICU Baptism- Yup. in the NICU among all of the other kids in their isolettes. Not the best choice, but it did the trick considering the crappy circumstances.
335- blog posts in the past year. That means that we have averaged .91 posts per day. I know that this isn’t enough for some but not a bad record.
247- Days that Ellie spent in the Hospital from the day she was born. That is 8 months and 2 days.
19- days that Ellie spent in the Intensive Care unit.
91-Distance, in miles, from
11.62 Distance, in miles, from our house in
157- days that Abby, Gus and I spent with Abby’s Sister and her family in Wayland. Family is family, but that was beyond the call of duty. We won’t ever be able to really thank them enough for that.
346 Claims made to Blue Cross for Ellie. Gotta love good blue cross. That is almost one a day. I guess that even the hospital billing folks take vacations for ten days each year. The pile of benefit statements is about a foot high.
~$1.8 million Total to date that has been covered. Gotta love good blue Cross.
$20 Amount that we have paid for her care. A visit to the 'regular' pediatrician and a visit to the Short Bowel Clinic before Ellie's MassHealth kicked in. Really gotta love good blue cross.
3 Inpatient Admissions
6- baby pictures of Ellie's small bowel. I bet you don't have those of your baby...
2 Central Line Infections. Knock on wood now. We are really lucky to have lasted this long with only two.
2 Central Lines. We are miraculously still working with number 2 right now.
5-The house record for most ostomy bag changes in one 24 hour period.
47- Omegaven Babies, so far.
5- Omegaven babies that are on it because of this blog, that we know of.......
6-9- months that the doctors told us that Ellie could be on PN without eating before liver damage would threaten her life.
0.1 Ellie's current bilirubin number.
7- seasons of Buffy-the Vampire Slayer that Abby watched while in the hospital.
6- weeks of Doxycycline for Gib’s Lyme Disease.
16- Days that Gib was out of commission with Lyme Disease. Abby is a saint. But seven seasons of Buffy will take you a long way, I guess.
750- milliliters of IV fluid that Ellie gets every night.
4 Red Sox Games Attended.
19- people who helped us get our house ready to sell and move to
1 ½ Days our house was on the market before we got an offer above our asking price.
5 Pool noodles eaten by Gus, the WonderDog.
3- calls to Ellie's doctors at odd hours since we have been home.
2:25- (AM) The latest call to a doctor at home, who was surprisingly talkative considering the hour.
1 Pecan pie eaten by Gus, the WonderDog on Thanksgiving. Yes, we still call him the wonder dog. I guess that comes from the way he loves Ellie.
(617) 266-2928- The phone number for Brown Sugar Cafe, the best Thai in Boston.
45, 30, 56- The various lengths of Ellie’s bowel (in cm) reported after three successive surgeries. We like the last, longest one.
18- different drugs that Ellie has been on. That we can remember….
Too Numerous To Count-
Meals in the Children’s café. Abby says Noodle Bowl day is still worth the trip.
Cups of too strong Au Bon Pain coffee.
Nights on the Children’s Chair/Bed
Words, notes, calls, meals, presents, emails, and other signs of support from our friends, family, neighbors, co-workers, bosses, and strangers.....
Zero- The amount of birthday cake that Gut Girl ate on her first birthday: (LINK)
Yes, if you haven't guessed, we celebrated her birthday on Sunday since I have to go to CT for work this week. Abby is coming down tonight to stay with me, though, so we will do presents and such tonight.
We had a low-key day today after we got up and took Ellie (and her father) to their first ever Easter church service. It was good to get out and Ellie really enjoyed the people and the music. She was just great throughout the service.
The highlight, of course was the family photo opportunity:
Then this afternoon Abby's sister came over with her family and brought Ellie Easter eggs. She thought that the basket of eggs was very neat but wasn't so sure about the hopping bunny toy:
Saturday, April 07, 2007
This is where we started. This is day zero before her first-ever surgery, notice no g-tube....
This is where we ended up:
One year ago, before the golf began, I got ready to cook pancakes and Jimmy Dean sausages. It is funny how the details stick around but I guess that the Breakfast of Champions and Pregnant Ladies has a way of staying in your mind.
I had just started cooking while Abby called the Obstetrician to see whether her symptoms-which included the words fluid and leaking and other words that make guys cringe- were a sign of labor.
Abby came in a few minutes later and told me to drop what I was doing and get ready to go to the hospital. The breakfast, incidentally, finally got cooked a few weeks later at the Ronald McDonald House in
I ended up watching the Saturday third round from the hospital chair/bed in
Little did I know how many days and nights I would spend in a chair exactly like that one in the coming year.
Abby has much different memories of this part of the adventure and tells me that hearing the announcers on TV makes her want to barf. Since I have never felt contractions or had my cervix examined, I can only imagine what she was feeling as I watched the calm green golf on TV.
A long 24 hours later, I watched the Sunday fourth round in the hellish waiting room of the Yale NICU surrounded by dozens of people (link) while I waited for the surgeon to give us news and for Abby’s ambulance to get her to
One very long year after that and I am home watching Tiger Woods do his thing from the friendly ass divot in my favorite rotten chair.
It is odd but it is the golf that really started me thinking about the entire last year. I knew that it would be coming but the golf was the trigger. With a milestone like a first birthday coming up I guess we will be thinking about the last year a lot in the coming days and remembering some of the really dark days that we had in the beginning.
Fortunately we have days like today to contrast against the crappy days.
One trip to Stride Rite today to buy real babygirl shoes:
Likewise, a weekend like we finally had last weekend makes up for the long string of days that I couldn’t physically talk to any of my siblings to explain what was going on and a period where my sister Kate and I avoided each other entirely for about a week because we both knew that we would be blubbering messes. Sitting on Kate's floor with Ellie a week ago made up for lots....
And even though reading a draft of this post made Abby and I cry, writing blog posts like this one makes up for the first one (link) that I couldn’t read to Abby aloud without sobbing in the hospital room at Yale.
As we learn of other short bowel families using this blog as a source to know a little bit about what to expect, I hope that it gives them a glimpse of the fantastic parts that go along with the crappy parts.
If we had known then that Ellie would be upstairs babbling in her sleep right now and the great progress that our little girl has made, those dark times wouldn’t have been nearly as tough.
Friday, April 06, 2007
We followed the advice of another trusted short bowel mom and scheduled the last appointment of the day, 4 PM hoping to get here late when people are done with their distractions and can deal with us. We're not sure of this approach but it was just as good as the other times and we didn't spend an entire day at the Hospital as we have for earlier clinic appointments.
They measured her height, weight and head circumference-9.45 kg, 21.70 pounds, 29 inches long, and a giant melon for a head that is filled with Omega-3 brains. In fact, her head is so big (how big is it?) Her head is so big that she needs to wear a size 2T hat to fit into it now. Abby and I both have big heads so she fits right in.
Then we spoke to the doctors. The surgeon, the GI doctor, and the TPN guru. They are very happy with her progress. So happy that they have peeled away another night on TPN from her week. We will now have her on just IV fluids two nights a week. We will need to separate them in the beginning to make sure we don't get a dip in her blood work but two nights of fluids is a lot easier than PN. They even told us that she had a reserve of nutrition. Imagine that, our girl has money in the bank. Or more appropriately fat in her thighs, but I will take it.
Since Ellie is treated by both the Short Bowel Program and her surgeon, it is funny to see the reactions of the same doctors that refused to do the ostomy procedure when they see Ellie's success with an ostomy. There is no skepticism or stern warnings now, just lots of success to go around as her bowel has come down in size, started to move food though, and she is up to round the clock feedings. Sometimes I want to ask them about their feelings on our choice of treatment but for now we will all feel good watching our very pale good sized baby who giggles and plays peek-a-boo with her mom in the hallway.
All signs are good. If we could just get an angry tooth to finally poke through, we would be in great shape. That will happen any day now.
Monday, April 02, 2007
This weekend’s trip was a success on all fronts. We took our PN show on the road, away from the comfort and familiarity of home and the security of the Route 9 to Children’s Parkway and came back without a hitch.
Making our trip even easier was the message from Ellie’s surgeon that we got when we asked him about going away for the weekend:
I have my cell phone on.
Any crisis and Maine Med is fine – I know the folks there.”
If that doesn’t make you feel bold, nothing will.
Apart from Ellie being exhausted and going to bed tonight at 6:45 she seems to be doing just fine. We will watch her very carefully for the next two or three days to make sure that her cousins didn’t give her a souvenir infection but it seems just fine for now. Sometimes it can take 72 hours for a bug to bloom in her. We felt her forehead a lot today. Lots of false alarms so far.
We are already thinking about the next opportunity to head north how we can make it even easier the next time around and what we need to do to stay for more than one night.