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.

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.

Join us in Celebrating our Miracle!

Belated Birthday and Baptism Celebration!

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.

Happy Weekend!

We're going to Ann Arbor to celebrate a belated Father's Day with Jose's dad at The Crazy House (3 generations of total madness!).

We're staying at my parents' currently quiet condo, and looking forward to getting formal photos with all the Velarde cousins!

Woefully Unprepared

Unprepared for walking, unprepared for talking, unprepared for life as a one year old. That's us, not him. Riding the razor's edge between gratitude and morbidity, cringing at taking this life forgranted, I never got around to buying anything for a child over the age of one.

Thankfully, we received a kickin' Britax to replace the infant car seat, when Bo ever gets over 22lbs (in another 2 months? he only weighed in at 19.66lbs Monday). And now that he has the world's most extensive baby board book library (thank you, aunties and uncles!), I don't have to fall asleep chanting, "left foot, left foot, right foot, right."

But I think I have to buy him clothes that fit. T-shirts, shorts and bigger pageboy hats. Shoes? Baby gates for the stairs? All that work to get him to one, and now I'm sort of at a loss. Do we live happily ever after, or continue to live in the shadow of fear? Cautiously joyful and sparingly foolhardy, we awaken to a new day with our new best friend, cooing and laughing, grabbing his chubby toes.

More Books, Less Cake

We loved Momlike's lemon cake, Bo loved all his new books.

My 1st Mother's Day (late posted pic)

Good news! the GI doc says we can try opening his unhooked time to 8 hours off TPN! Although his citrulline level hasn't changed from the last time we looked, and he isn't super interested in food, and he's also weaning himself off the boob (this is turning out to be much harder for me than him), I have to keep hoping.

I asked about Gattex, but doc was not willing to try it just yet, especially since its indication is for kids with villi, just short guts. But, she's planning to go to the Short Gut Syposium at Pitt in September, and hoping to meet Puder and Gura. That's the week preceding our scheduled trip to Boston.

Weighed in at 19lbs, 3oz (with cotton diaper; last weigh-in was in the buff)

Broken Record = Mom

I know I'm really a mom now. Even my blog is starting to sound like a broken record: Bo this, Miracle that. But maybe it's simply because moms and dads are continually surprised, daily, by these miraculous little people. It sounds repetitous, but it feels new every day.

And with the packages coming to the house, it feels like Bo's birthday, every day!

God is good, all the time. All the time, God is good.

The Big One!

Happy Birthday, Bo! We are so amazed and feel so blessed as we watch you growing and thriving. You weighed in at a fantastic 19.16lbs, 27 inches. You are wiggling, giggling and every part a one year old. We are so so so lucky.

To give credit where credit is due, this is mostly because Dr. Puder insisted that we get to Boston urgently for Omegaven (he was 3 months old when we started). I know of 2 other MID babies born within months of Bo who are not as lucky in their health as Bo. One probably got her Omegaven too late (@ 5, not 10, months of age) to compensate for permanent and extensive liver scarring damage, and the other never got Omegaven- her kidneys got fried from dehydration instead (and she is recovering from an 8-organ transplant and relisted for kidneys).

I can't help but think (and think, and think) that Bo could have been in either of those situations by now if it were not for a Miracle. Why, through Bo, Jose and I should be the ones to be lavished with such grace, we may only know after more of Bo's life unfolds.

And while we wait, we savor. We savor your joy and your accomplishments, your strong will (nap-fighter!), and your gentle nature. While your physical developmental milestones are behind (Puder and Gura were completely unfazed by this; meanwhile, we suspect that sitting you in a pile of toys everyday does nothing to encourage creeping or crawling- oops), we know that cognitively and emotionally you are exactly where your peers are (and even ahead), and we watch your physical progress with gratitude and amazement (after we remove that huge pile of toys).

And after all the angst and anger. After facing down the arrogance and skepticism. We remain stalwart. I'm not closing this post with the vitriol I once had, but with the compassion and clear-headedness that led us to Boston (thank you, Sam Jacob, for sending us that link when you did!), and my desire to share with all the other short gut mommas and poppas out there, that we rejoice with you on Bo's birthday, and each of your babies' milestones.

And when your attending GI tells you: that getting Omegaven is too much paperwork; that their hospital won't pay for it, you can't pay for it and they know your insurance won't commit to pay for it; that if they can't or won't get it that no other hospital in the state won't; that even though your baby's liver is responding in an unprecedentedly positive manner to Omegaven that they are not pursuing the application to the FDA; that you aren't allowed to switch service to any of the other four pediatric GI doctors... you do have the courage to find someone (even across the state) who will do the paperwork, you will find a doctor who is as amazed by your baby's recovery as you are, you can get your infusion company to partner with your hospital, you can find your way through the maze of procedures and applications for any and all Medicaid waivers available in your state (probably with the help of your hospital social worker), you will find a nursing agency to care for and love both your baby AND you, and you may even see the day where not one, but two other hospitals in your state have Omegaven for their most fragile patients.

cake pics to come