Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Monday, July 28, 2008
Good News, and Okay News
Good news, Bo's direct bilirubin has remained stable at 0.1 since late last year. Okay news, since he's really wiggly and is cutting a few more teeth, he did not gain any weight in the last 2 weeks. In fact, he lost a hair. I still say he's ~20#, 28" and head circ 47cm. More pix tonight, I promise.
Thursday, July 17, 2008
Where are the new PIX?!
Mommy is exhausted and suffering brain damage, formerly attributed to Post-partum Depression. I've been advised that this is also called Baby Brain, and that my brain will never achieve the sharpness and acuity I once had, that I so desperately want back and that I really really really can't do without.
I'm just so grateful that I did not attempt to have children before finishing school. Because I assure you, while there are supermoms out there, I'm not one of them. And I would never have survived with this restricted brain use.
So, that's my excuse for belated picture posting and thank you notes. All are forthcoming. Now, if I could only locate that frontal lobe...
Monday, July 7, 2008
Bo Takes St. Toms
Okay, this is cheating, I know. But I haven't gotten around to uploading the million pix from the weekend's festivities. I just wanted to say what a great weekend we had, how wonderful it was to see new and old friends, given and chosen family, neighbors, mentors and other babies.
And when I went to mass yesterday, I met the family that Father Ken spoke of in the first homily I heard him deliver. He had talked about visiting them in New England, where they had gone to get treatment for their son who had a medically rare condition. He had gone to sit with their son so that the parents could leave the hospital for a few nights. This story resonated so deeply with me, I was shaking. I knew that I had found my parish home then and there .
So when I met them yesterday, I couldn't stop crying, not the least because they are still grieving the loss of their youngest family member.
Thursday, June 26, 2008
Cheeks v Nose
Wednesday, June 25, 2008
We've Come a Long Way, Baby Bo Bo
A year ago, our lives were so different. So different from what it was the year before that, and so very different from what we maybe presumed it would have been. We became people we were not, people we had never been, people we are still only just discovering. Who is this person I've become? It is disorienting and traumatic, it fills me with this impossible hope and not a bit of fear.
I've got the attention span of a flea, haven't been able to read anything longer than a blog entry of newspaper article in months, sleep okay, but have not interest in things I used to have interest in. In fact, can't even remember what I had interest in. Sometimes the feelings of exhaustion are overwhelming. And I can't figure out if this is normal motherhood or post traumatic stress disorder. Maybe they are one and the same. Some professional guidance is in order here. I need some straightening out. I mention this to the mom of 2 MID kids and she starts to tear up. She and her husband will celebrate their 25 hard won years of marriage this September. And she reminds me to make time for Jose, for dates, for time together. Even when we can logistically, the effort feels strained and unreal.
Last summer, we would wake up, bleary eyed, stumble through the clean-up and speed down the hill to the NICU to nurse, hold, change diapers and read Journey to the West. Eating without tasting, sleeping without dreaming, hoping without breathing. We did not know what was wrong or why, only that there was this little tiny person in a clear plastic bassinet, waiting for us. In the end, it took the five longest weeks to diagnose, living in the netherworld of hospital chairbeds, hours of boredom and anxiety, waiting and longing and waiting and waiting. All of us waiting.
Now, I get to go home for lunch and get hit on the head with a spatula or cardboard papertowel holder. I'm halfway home. It's the last half that seems like a hat trick.
Tuesday, June 24, 2008
Our Normal
Now that the kidney stones are over and the Aluminum is at its lowest (26 when we went to Boston, 54 when he had stones, and 16 as of last week- Boston prefers it to be under 10), we will watchfully wait. While mothers of typically developing babies are savoring these infant months, and this is not to say that I don't love my infant, I cannot wait for him to get bigger and less fragile. I'll be in white-knuckle mode for the next 2 years. Probably not a sustainable frame of mind. Talk me out of it. No, seriously. This is not a place I like being.
Although squeezing his big cheeks, that I can handle.
Monday, June 23, 2008
Join us in Celebrating our Miracle!
For those of you out of state, we're not sure where you'll be on the 4th weekend. But if you are in town, or feel like coming to visit, Bo's Party will be an open house/pot luck on Saturday, July 5th from 2-6pm. His baptism is at 7pm at St. Thomas More Catholic Church.
Call or email for directions.
Subscribe to:
Posts (Atom)