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

Three Big Things Before the First Birthday

I'm posting three pictures; two are designed to take the sting of panic off of the third. That last picture is not for the short gut parent who is faint of heart. Buyer beware.

Practicing standing, two bottom teeth, and a spliced line. That last addition was something we were expecting at some point. I guess that point was yesterday. As luck would have it, the surgeon who is applying for Omegaven here at Bronson was the one to splice Bo's line. And the leak the original sprung was really really tiny. And it all happened during the window when he's off his TPN. Not that we ever enjoy a trip to the ED, but we had Nurse Colleen with us and all the other fortunate things mentioned above. Bo was even good enough for a bit of a nap while we waited for the surgeon. And now I have both his cell and home #'s. He and Puder trained under the same guy; needless to say, they both believe in a level of medical practice I like to call Real Medicine. Thanks, Doc!

Taking Stock

This pic was from a year ago, today!

Bo will be a year old in less than a week. He has not had to stay overnight at the hospital since December. We're looking forward to the annual NICU reunion the weekend after his birthday. His two big teeth make him look like a beaver, sort of. He's doing a lot of standing and practicing walking! I hope he is walking by the time my parents see him in July.

We're having a very low key birthday with his Grandma Holmes on Tuesday, and bigger belated birthday party to coincide with his Baptism. For those of you who are in the area or will be able to stop by, this will be at St. Toms here in Kalamazoo on July 5th, Saturday night, 7pm.

Medical update: One of the world's experts on Aluminum toxicity, Dr. Winston Koo, is at Detroit Children's. He did not seem as excited about Bo's Aluminum level as the Nephrologist (Dr. Bunchman, aka Yosemite Sam, aka Dr. 'Stache- he has a giant bushy mustache). I'll get a referral to him from our GI. We started eating meals together, where Bo gets to see us eating and talking. He has reluctantly started eating with us. Actually opening his mouth for a few bites of yogurt or even a cheerio! We'll see the GI next Friday.

And last but not least, we spent this week with his Yee Yee-Ma, my sister Tung, who had a week break in between meetings here on the mainland treated us with a visit. Bo loves Tung. They got to spend time reading, walking, playing and having fun together. What a great birthday present! I even got a mother's day spa day! Thanks, Tung! Bo is going to miss his aunty. Hopefully we will see her again in October (can we please set a date?!).

Waking Up, Happy!

Maybe Bo is finally starting to move? I was mid-diaper change the other day, and turned around to get a fresh diaper. When I came back, there was a wet spot by his line, right by his shoulder. I thought for sure that his line had finally snapped. Then I sniffed it and realized, thank goodness, all this requires is a fresh blanket! He had peed a trajectory up to his shoulder!

Tio Ren is here through Saturday, and Yee Yee-Ma (Tung) arrives late tonight for a week's stay. And Grandma Holmes will be here for Bo's first birthday!

Murray doesn't seem to notice her naked, tail-free butt. She is in high spirits and wants to escape from her kitty-cat condo. If anyone knows someone who is a "caretaker," Murray still needs a home.