Bo has a baby sister as of June 19th

It has been too long since my last post. The days come and go. The hope, the paralyzing fear, the exhaustion, the mind-numbing heat. These thoughts come and go and I rarely have the heart to post them, hoping the dark days will soon be supplanted by joyful ones, and fearing the joyful ones will be overtaken by disappointment. But the reality is that heartbreak is never-ending. We don't just experience it once and say to the Universe, no thanks, I'm passing on seconds. I already got my ticket punched. So I live between heaven and earth, touching reality, anxious of heartache, grateful for grace.

Ahn Tsuen Andrea Velarde-Chan was welcomed into our family on Juneteenth, 2010. Although her labor was induced, with a mild medicine, the rest of the labor and delivery was completely drug-free (like Bo's). Labor lasted ~15 hours, with only 5 of it being active. Ahn was born midday with her father, midwife and nurse present at Bronson Methodist Hospital. She was quietly placed on my chest after birth and remained there for quite some time as we drank in her peaceful entrance into our lives. She weighed 7 lbs 6.7 oz. and was 20 inches in length.

Her Chinese name is Peace River. Peaceful, tranquil river. Her middle name is in honor of our dear friend, Andrea Rosenberger.

Bo has better and worse days during this time of seismic transition from being an only to being a sibling. It is everything I had hoped for and everything I had dreaded. When we came home from the NICU to contemplate the darkness and uncertainty of Bo, I dreamed of another baby. One to take away the heartbreak waiting around the corner, at worst. One to temper Bo's only-child status, at best.

Happy 3rd birthday!

Shot Nerves

Written 5/11/2010, posted today 6/2/2010

Bo's first line lasted 20 months before he outgrew it. He is on his second line: it is now 15 months old. While it has been infusing beautifully, we could not draw blood for labs on Sunday. So the nurse came back Monday morning. Still no draw. So, all day Monday, I coordinated with his GI's office, the infusion company, the nursing company and the hospital that runs the labs to get supplies to get the line to draw and to get labs run. We instilled TPA (aka CathFlow, Genentech's Altapase) for 30 minutes. Nothing. We waited another hour and a half. Blood! I spent the day on pins and needles and when it finally drew at 8pm, we were all so relieved. It's not like Bo wasn't in the hospital for his first 7 weeks of life, and we were told he wouldn't live, and that he needed a very risky transplant that would itself kill him, and that we should consider hospice if we refused transplant. It's not like we had an easy time setting up diaper service, a nursery and layette supplies, wondering how long we would need them. It's not like I didn't have a convertible car seat that made me cry every time I looked at it, wondering if we needed it at all. Or that every time he refluxes my hair doesn't stand on end, leaving me to wonder if we will be getting admitted back to the hospital. It's just that yesterday was a brutal reminder of all those things at once. Without being able to draw labs might mean the need to replace the line, or a line infection, or no new TPN or using the last week's TPN formula (best case scenario). But we got lucky. The doc had no problem calling in the order, the infusion company reassured me that they sent this out to homes all the time, the nursing company was comfortable having our nurse instill the enzyme, and my brave husband did the final aspiration and blood draw. Besides working the phones, all I did was try to keep the toddler from bouncing up an down to the Wiggles. That's all, good night.

Rinse lather repeat while they were at DeVos for an infusion just a week later. Thankfully, the next scheduled lab draw was a total non-event. And Bo will turn THREE tomorrow. I cried in the car all the way to work this morning. None of his diagnosing physicians expected him to make it to this day. I wonder if this is what other parents feel when their troublesome teens finally walk across the stage and grab the diploma? High school, college, grad school, wedding, grand children. Those will all be a non-event compared to today.

Intestinal Failure/Rehab 2010 Chicago

Hopefully, the new baby's temperament and my ability to sleepwalk will allow us to attend this conference in Chicago in September!

Unprepared

I am unprepared to divide my time between 2 kids. I am unprepared for Bo not to be the favorite anymore, and even more unprepared if he is? Oh, therapy. I see years of it ahead, which I am also unprepared for. I am unprepared for night nursing (I did pump around the clock for Bo, and I know I really like sleeping through the night, as a result of that). I am unprepared for, but anxious to have a "take home baby." I am unprepared for the cord blood registry expense, but reallyreally think it's something we need to do (any comments from our community of the medically fragile?). I was totally unprepared for gestational diabetes. I'm totally unprepared for another Gemini, but am resigned to the fact that this child will not make it to its original due date, and will be, like Bo, an air sign. God help me.

Somehow, with a double stroller in the garage, I feel calm and hopeful that we will have another natural birth, that maybe I can avoid insulin by swimming more, and that my pelvic pain (symphasis disorder) will abate. It's already feeling much better. And I am oh so grateful to the gods of fashion that flats are back "in."

Bo, by the way, has a drippy nose; hoping it's not allergies. He is into playing tea parties and shopping, learning about currency and horse-trading. He is naturally a better negotiator that I. "One more book before bedtime." Who could say no to that?

Premonitions, Discretion and Doubt

I've had trouble writing anything lately. Shortly after my last post, we had a sudden death in the family, and the ominous foreshadowing of that missive contained all the emotions I would have included anyway. We went to the East side of the state to be there for the bereaved. Not that there is anything I can say to take the bewildering absence away. In fact, I'm sure I said a lot of things that were the opposite of helpful, but with the best intentions. I'm not so good at the "shut-up" part of consoling. Hopefully Bo's cheerful demeanor and charm were a source of solace, if not distraction.

We were able to make it out there with a wagon full of medical supplies and still forget a few essential things: power strip, enough saline flushes, paper tape, enough heparin, germex, detachol. We were able to supplement or replace what we had forgotten at the local pharmacies, and have an additional delivery from our infusion company. Additional, because we had our week's supplies sent there, before we called for the additional stuff we forgot to ask for. Oops. Luckily, this location was actually a good hour and a half closer to them than our house, so they were able to oblige promptly and with little complaint.


Whereas the odds of a crisis arising for Bo would certainly have been higher than this particular incident, I can't say that facing all this during Holy Thursday, Good Friday and Easter felt anything less than putting too fine a point on an essentially human condition. That this life is one destined for and designed to encompass death and dying, healing and rising, rebirth and hope in the face of cruelty and pain. Miracles despite, and really because of, the travails that we face on our paths full of stones and roots, predators and pain. The hope for sunshine, the succor of a light rain, the reinvention of life itself. And we keep walking. Partly out of hope, partly entitlement, partly out of lack of anything better to do.

And turning the prism of that drive to move forward in my hands I can see sunlight streaming through this notion of entitlement, changing it, reshaping it into its refined self: faith. Faith that there is a tomorrow. Faith that there will be something better for Bo. Faith that I am the recipient of unconditional love and adoration. Faith that I can be the source of unconditional love and adoration. Faith that this love will drive us to be better than our basest selves, and do better and live better and help better. Hope. Love.

Faith, hope and love. And the greatest of these is Love.

Building Faith

Everyday, we dodge the bullet. Each day is another miracle. Sometimes, our miracle has become so ordinary, we wonder at the insult of the world's sense of normal. And somehow, it is so hard to remember that just because we lose our friends or family members anyway, just because we and those we love may stumble under our personal demons and afflictions, and just because we feel our hearts breaking over those losses, that our broken hearts still have the capacity to fill with awe and love at the miracles we continue to be blessed with.

One of the major downsides of all this information accessibility faces us when we unearth obituaries that we would have otherwise known nothing about. In years past, someone disappearing from our lives from long ago would leave us to wonder. Maybe create imaginary adulthoods, alternate lives for our long lost friends. Now, once or twice a year, it occurs to you to try and find someone. And you don't get anything. And one day, there it is. And even though it's seven years after the fact, you read that she died at 29. And because you are just finding out, it is exactly like it just happened yesterday. And the immediacy of that grief and heartbreak is so foreign and so close. Maybe that is what it is like to actually unearth an artifact. An old fragment of pottery. Someone's hands formed this vessel, carried it, held it. Their lips touched it and received succor.

And when this happens, I never know what to say or how to feel. The truth is that when someone you love dies, no matter how young, how old, how accomplished, how haunted, how close or distant you have become over time, there is grief. And after the heart break, there remains an ache. With all the aches and pains and scars on our hearts, it is an astounding trick that our hearts continue to beat and fill with love and hope.