Written Sep 2, 2011 12:00am
It was 3am on Monday, August 29, 2011, when Laura and I left for the hospital with Laura in a lot of pain and me very hungry.
Twelve hours later, Timothy Robert Brandon Lee arrived in the world, with a head as purple as a Brett Favre jersey, thanks to the cord wrapped around his neck. Dr Elfstrand and the nursing team quickly removed the cord and got the little man to let out a scream (which was almost as loud as my sigh of relief) and he started taking his first breathes. He weighed in at 6 pounds 14 ounces.
He did a quick parade wave to the family before being whisked up to the special care nursery for more observation. In addition to his Down syndrome diagnosis and unusually good looks, they wanted to keep an eye on his blood sugar.
He seemed to be progressing on his first day, though blood sugar was a little low.
But on the second day the nurses realized that he had not pooped. Frankly, the Lees love their food and so having a cast iron digestive system is pretty much a requirement. And this little man’s GI tract was not getting it done.
And so he needed some tests. But while Laura’s side of the family are big readers, my side has never tested especially well, and unfortunately, TRBL got my genes on this one. And so the tests have been a little rocky.
He started with an x-ray, which was inconclusive, and so they ordered a barium enema.
For those not familiar, a barium enema is a medical procedure, but could easily pass for a fraternity prank, given that it involves a plastic tube inserted into a person’s rear end, colored liquid and a video camera. Although Timothy took it all like a champ, it is both amazing and tough as a parent to watch an image on TV of your newborn’s colon as it fills with colored fluid, and to try to hope that it’s going to show good news.
The enema was intended to check whether his lack of pooping was related to a blockage or an issue called Hirschsprung’s disease. Hirschsprung’s is a condition where there are no nerves at the end of the colon, which prevents waste from being evacuated (a medical term for ‘pooped’).
The doctor said that the enema looked like the issue was probably Hirschsprung’s, but the surgeons performed a biopsy to get confirmation. It’s scary to hear that your three day old will be getting a biopsy (we were kind of hoping he would get his first biopsy sometime in his 60s or 70s).
One challenge with Hirschsprung’s is that he would have a colostomy for 4-8 months, which means that his waste would be collected in a bag attached to his abdomen. This is not the end of the world, especially since they expect that they will be able to reattach his colon and he will ultimately have a normal digestive system.
He appeared to be making progress on his diapers, and we were hopeful that he had gotten past his digestive issues, but that was not the case. We were very disappointed to hear that the biopsy returned with a diagnosis of Hirschsprung’s disease, and so surgery was quickly scheduled.
And so that’s where we are, with colon surgery scheduled for Friday morning, Sept 2nd. It’s okay — we weren’t going to the lake for Labor Day weekend anyway.
Now, these medical procedures are challenging, but there have been no surprises. We knew, after we received the Down syndrome diagnosis in March and talked with people with kids with Down syndrome and did research, that there would and will be many possible medical challenges in addition to the other aspects of Down syndrome. But we are ready for this journey, and for the learning that we will take and will share from it.
We have been receiving awesome care and attention, first at Abbott Northwestern Hospital and now at Children’s Hospital in Minneapolis. We cannot say enough about the quality of the staff. And so we have full confidence that these procedures will go well and that we will take possession of the young lad in a week to 10 days.
Thank you to everyone for their thoughts and prayers, meals and cards and everything. The support has been overwhelming. This is an incredible little boy who has taught us a great deal already, and we could not get through this period, and we won’t be able to get through his early years of his life without your help.
Yes, the ups and downs of this situation suck. The waiting, the search for answers, and the fatigue all bite the big one. The diagnoses and hearing words like surgery on a 5 day old and‘colostomy’ scare the boo out of you as a parent. But we are not the first ones to go through this stuff, and many, many people have and are going through far worse life situations than us. So we count our blessings. We are so fortunate. We know that we can handle wherever this goes, especially if we are equipped with the 4 F’s — Faith, Family, Friends and Humor.
Laura and I went to a Bruce Springsteen concert with friends a few years ago. It was a 7pm show, and 7 o’clock arrived and Springsteen was not on stage. A half hour, 45 minutes passed, and still no Boss. Finally, at least an hour after the scheduled start time, Bruce Springsteen and his band took the stage, and by then we were a little annoyed. But they proceeded to put on an incredible show, and it easily made you forget that you had to wait a long time for them. They were amazing.
Well, that’s this little scrapper. Timothy has a flair for the dramatic and is just going to make us wait a little while for him. And we will. And when he finally comes on stage, he’ll easily make us forget the long wait. He’ll be amazing.
And with a little man whose initials spell ‘trouble’ (TRBL), why would we expect anything less?