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.