Crazymaking Teeth

Couldn't post pix last night; buggy blogger. Sigh. So a quick update. Bo is teething again. This time it's 3-4 on the top that are coming in. His gums are rock hard and you can see the buds trying to push through. He's drooling like crazy and I think even producing lots of snot because of this. But normal baby things don't seem to affect Bo normally. He's been vomiting a lot from all the drool and mucous. So much so that we had a nice visit to the ER (labs all turned out normal), a follow-up with his pediatrician, and another set of labs drawn (no data on that yet). I've never been happier to walk out of the ER "for no reason."

Bo's Baptism

Bo's party was a wonderful celebration, and just a small way for us to tell each of you in person, how much your love and support and prayers have helped us start on this rocky road to parenting Bo.

We are so grateful and humbled to have Bo with us with continuing progress in his health and development. When we look around at the other MID babies that are around Bo's age, we just get so full of emotion.

I was devastated to learn that the baby girl a month younger than Bo had passed away from transplant complications. The other girl a few months older than Bo is still waiting for a call from Pitt for her transplant. The boy from Wisconsin is planning on getting admitted to Boston Children's Monday (yay!).

Bo is teething again. He is just covered in drool. And he hasn't gained any weight in a few weeks, so they have increased the calories in his prescription. He is adamant about spending time standing and creeping around the sofa, and "talking" a lot. He's started going to playgroups and we're shopping around for music classes. The 2 classes he's tried he was really into, so we're excited for him to start getting socialized and learn new tricks from his new little buddies.

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.

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...

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.

Cheeks v Nose

The cheeks are gaining on the nose. It's a close race.

And, quick weaning/nursing update; that was a false alarm. He's still nursing 2-3x/day. And I'll keep pumping probably until his next birthday so we have milk in bottles in case he really does wean before then.

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.