Babies, Sleep and Restive Drooling

Somehow they just seem to get bigger and learn more complex things just long enough for me to note them, but hardly long enough for me to linger and savor. They just seem so much more goal oriented that I am, anymore.

We are not alone

I have had too much to say and not enough words. So first, let me encourage you to click on any of the pics I loaded in the last update so you can get a larger image. The one of Ahn is representative of her nature. Exuberant and joyful. Peace embodied. And let me say, that her joyousness is infectious.

I had a friend say that after a medically fragile child, the typical child can heal your heart. I was foolish and too contrarian to agree at first. I guess I expected a choir of angels to burst from the heavens with a "You're Healed" certificate the day I gave birth, and when that didn't happen, I doubted. But, even with my imperfect faith, I did believe that the clouds would part, eventually. Today, after almost as much time as it takes to earn a bachelor's degree, I am proud, stunned and grateful to say that my brain has resumed functioning.

I want to point out, at the risk of sounding overly self-conscious, that these essays of self-reflection serve a purpose beyond narcissistic navel-gazing. I want to communicate that living with, surviving and thriving with a medically fragile child has its pitfalls beyond the physical threat it represents. It is a threat to every marriage, friendship and family of origin. It should not be understated the tremendous impact a medically fragile and chronically ill baby often has on families, individuals, and the parents' families of origin (ie my family and Jose's). I have had friends and family commend us for beating the odds, but most often it is those individuals who have witnessed our fight, who have also buttressed us in our greatest need. We did not walk this path alone.

For me, I came to realize that there were relationships and people I needed, I craved, I longed for, that had never been and would not now materialize. That the perfect words from the perfect people would never be realized in this life. But that the imperfect world, the one I did not find enough comfort from, was the only one I looked to. And like the rain, it comes slowly and seemingly from an unimaginable height. And even though it does not come from where you hope, or seek or expect, you do get exactly what you need to fight another day.

I cried all the way home, listening to the radio, where the author of a book talked about this thing he invented and wrote about as a response to his cancer in the face of his recent parenthood to twins. He formed a Council of Dads as a safety net, in case he wasn't there to raise his twins. And I thought, what about me? Where is my council of children, in case my son isn't there anymore for me to parent? I prayed and coveted more and more babies during that first year of Bo's life. But the reality I came to understand was that even if I converted to become a Quiverfull mother, there would be no council great enough to absorb the tsunami of grief that threatened to drown my essential being.

And even though my parents will never be the parents I hoped they would be, and I will never be the child they imagined I would be, I am satisfied that my love for them is great enough to supplement my shortcomings, as I know that the roar of their love is more than enough to drown out theirs.

God is with us, in the form of our family, our friends, our steadfast hearts. Burning the midnight oil for far longer than eight nights. The reality of this magic outlasts our own doubt, our own fear, our own terror.

long overdue

Four Seasons

My husband would rather not see winter again, ever. Or Fall or Spring. Me, I'm a Michigander. And while I can appreciate the marvels of nature in the Southwest, the Grand Canyon, the oceans, the deserts and the redwoods, I get a kind of peace here that has remained unmatched. I love the confetti of color the falling leaves make as the trees turn colors. I love the smell of earth and minerals when the spring showers quench the flowers. And I do, I love the quiet when the world is coated in a blanket of snow. I look out of the bathroom window onto the street. So quiet, even with cars shushing by. The tree limbs hanging their down around the house. I can't wait. I know it will be a long, cold season. And it does grow tiresome when it's muddy and cold as far into the year as April. But even three months of quiet, dazzling snow. Cold weather keeps Bo more stable (less likely to dehydrate), and so I look forward to the freeze as Bo's springtime.

Living, Waiting, Hoping

My life is full of love and hope.
Bo: We are having a conversation!
Me: Yes we are.
Bo: Once upon a time, there was a little steam engine. It crashed. Into Miss Jeanine's store. And there was a fire. And Corbin was hurt. He had to go to the hospital in an emergency vehicle.

He's three. He's amazing. He has a chronic, life-threatening condition. Every time his pumps start beeping, my heart races, I break out into a cold sweat, and I think how close we are to losing him. Then I think, well, any child could walk into traffic. Or fall off a bike. Or eat a battery. But. It is like I watch Bo walking down the centerline of an undivided highway. Every day. Every. Single. Day. His chances of disaster are much higher than your average toddler.

So I put my existential panic in perspective. Readjust the focus. And soldier on. One slow foot after the other. Feeling, and re-imagining the feel of his soft hot hand on my arm. The small, sweet kisses. The weight of his body as I carry him down the stairs. Those irreplaceable sensations drifting onto my heart everyday like Christmas. The sound of baby Ahn's newfound giggle. Her whole-body smile. The feel of her soft, cool cheek against mine. I will never get enough of that. Please let me have these presents every day. Every day is Christmas here. And I step one foot in front, then behind. forward, backward. Lingering in This Today. Slowly. Luxuriating in the Today we have Today. Only touching the edge of our sea of Tomorrows.

Why Do It?

There's Just Do It, and Why Do It. Blogging seems so 2001. A pet-rock type phenomena. But I am stalwart in this project. I am dedicated to the off-chance that someone searching the huge junkpile of the internet looking for hope after an infant's diagnosis of microvillous inclusion disease will stumble upon us.

While it might seem that we are more or less a regular family, it cannot be overstated that Bo's existence is an outlier, a miracle if you will. He wasn't supposed to live past 1. He is now 3 and in preschool. The magic here is that this good health IS reproducible. Just add Omegaven, and voila.

Maybe that's why I have such a hard time documenting Ahn's infancy. It is so different from Bo's. When Bo was 3 months old, we were in Boston, trying to get Omegaven, fighting for his life, staring down the barrel of a rising-biliruben (~9)/liver failure gun.

This week we celebrate: my mother's birthday, our 10th anniversary, Ahn's baptism, her 100 day birthday and my sister's birthday.

Happy September!

His Last Days, as an only child

As is my wont, I'm posting pix 3 months old. Besides lazy, my other excuses include: paranoid that my medically fragile child meets a most unfortunate turn in the road, ditto newborn, ditto older home. Two out of three since these photos were taken have occurred (see the janky line issues, and the not-mentioned hole in the ceiling incident).

These are from the weekend preceding Bo's big #3 birthday, the one the docs in Ann Arbor insisted we would never see, at least not without transplant and huge medical complications. They were wrong again. Each passing day is a testament to their utter wrongness, on so many levels. I'm not mad, I'm not hatin', I'm just sayin'.

Don't get me wrong, I love our house; it is built with old water-tight wood, plaster, brick and apparently the thickest cast iron tub our plumber has ever seen, but why our plumber knows about the thickness of said tub is part of the story. There was a patch in the ceiling of the living room, under the tub. During my maternity leave I noticed the paint bubbling at that site. My MIL matter of factly stated that it was a moisture issue, so required plumbing before plastering. In fact, the previous owner had smashed/discovered a hole in the ceiling, and instead of fixing a slow drip, shoved half a dozen towels up into the ceiling and patched it up. Still leaking. The tub was leaking down the back into the ceiling, and out the front with a noisy dripdripdrip. When we replaced those fixtures due to the drip, I guess the new fixtures leaked even more (thus reinforcing my notion that older homes are better, as it took nearly 80 years for those original fixtures to give up, and less than 3 for my new ones to do so; I digress). So, bubbling paint. So the plumber smashed a hole, fixed the new fixture, replaced the old tub drain, and removed the moldy towels. The handyman ("Joe the Builder, to you, if you are a toddler) patched up the hole better than when we bought the house. And Jose will paint it this week. If I ever run into that fool who owned the house before us, I think I will give him a hard punch in the nose, or at least a string of obscenities. But, even with that ordeal, I'm glad we found the mysterious source of the occasional musty odor we'd detect in the house after a long weekend away. And as a microbiologist, I am every which way but grossed out, and totally relieved to be rid of those grungy mold/mildew towels.

The Real New Year

I always thought of Fall as the real New Year. This is more true than any Fall. In two weeks, I will return to work from maternity leave. The same week, Bo will start preschool! There were many dark days, strung together, end to end, like one jagged tooth after another that seemed to say this day would never come. So when someone asked me if I was going to cry, yes, but not for the reason most parents do.

The Insurance Tango

I don't know why it is that anything more than touching base with Bo's case manager gives me a serious case of the chest-tightening stop-breathing feeling. With a complex case manager, everything flows through her. I don't have to wait on hold for hours at a time, and I don't have to explain Bo and our situation over and over. In fact, I highly recommend getting a complex case manager for your child if your insurance company has such a program. That being said, we are trying to get a preauthorization approval. If that sounds like double talk, welcome to insurance. I won't go into it further than this, because I'm getting bored and frustrated just typing, so imagine you are already onto some other *CLICK* page.

Let's just say that Bo is feeling well. We are back to bi-weekly lab draws. Ahn weighed 12.46lbs, and we are craigslisting as fast as we can take pictures of stuff. Trying to figure out pre-school and part-time infant care programs. Wish us luck.

Dr. P called the other day (why is it that I feel like Ed McMahon has just called when this happens? Like, OMG! Celebrity!! Can't breathe. What do I say? Really, he knows my name?) and said that he has SEVERAL MID patients on Omegaven now.

No Admission Required

You might call it coincidence, or you might call it faith. You might say the prayers and positive energy affected the outcome, or you might say it was already in the works. I know what I believe. Faith is not something datasets or spreadsheets can confirm, but for me, its effects are tangible. Let me just say that at the beginning of what looked like our third hospital admission in 6 weeks, I sent a call out for prayers, and by the time it was Bo's bedtime, we were tucking him into his bed at home. I'm just sayin'. Whatever works.

Angels among us. The Spirit at work. Our hearts and our hands. There are very real people doing very real work that keeps our Bo healthy and alive. They do things that are not listed as "goals and objectives" of their job requirements. They do these things because they are angels among us.

Thank you.

Janky Line

Since Bo's last admission to fix his line 2 weeks ago, his line stopped three times. Twice in the early hours Tuesday morning 10 days ago. And once today. The first 2 times, Jose was able to get it going again. Not today. He and the nurse took Bo to the surgeon's office. Please send prayers that they can fix this without admitting him to hospital.

Close Call

Thursday morning, everything looked fine. The site where Bo's line exits his body is something that is visually inspected daily. It looked fine that morning. I had noticed that it was pinker than I like it when we were inpatient at DeVos after we did a dressing change there the Saturday before last, but it looked fine as late as Thursday morning. By the afternoon it was weeping. I started panicking.

My mind was racing: what if it's a line infection? what if he is septic? what if this blows up so fast we can't catch it? how do you raise a child in the shadow of her sibling's early death? I couldn't stop. We did a dressing change and Bo was crying that "it huwt." I nearly cried myself. I was so freaked out I forgot half the things we needed for this sterile procedure. Thankfully Bo's dad was fully functional. We decided to look again the next day, do another dressing change if needed and possibly go to the hospital. We monitored his temperature every half hour till he went to bed and once when we changed his Omegaven bottle around midnight. It went up to 99'F and came down to 98. All Friday morning it was 97 and some change. We called the surgeon who ordered cultures from the drainage and from his blood, as well as antibiotics (abx) to start that evening.

We were happy to treat from home. Bo had other plans. Saturday after his second dose of abx, his line stopped. It had been difficult to draw blood from for cultures over the last 2 months, which was why we had Altapase (TPA) in the house, but it had infused beautifully until that morning. Then nothing. Pffft. Hard as rock. Again. My brain stopped. We packed up the car, the baby, the kid and a few bags of stuff. As we're headed to the hospital my husband asks if I've called the surgeon so we can go straight to the floor. DUH. No, I didn't, but I would have had my brain been working. So we did, and he did, and we got there in time to watch some movies from Child Life's library, and take a nap.

The transport nurse used the hospital protocol for TPA and worked on his line for 5 hours. A little bit of junk came out of the line, but the clot didn't soften much. So the surgeon put Bo on the schedule for Sunday morning. With a slim wire not too stiff that it would puncture the line, and not so floppy that it would not penetrate the clot, the doc threaded the wire through the line and back and was able to get the line drawing and infusing in 23 seconds. Surgery averted; a simple plumbing job saved the line. We were discharged within 24 hours of admission.

AND yesterday, Monday, his cultures remained negative for bacteria, so the abx have been discontinued. PTL! Ahn was very cooperative throughout, and since the hospital is 2 miles away, I went home with her and slept, fitfully. God is good, all the time. All the time, God is good.

coming of age

Bo has been very stable and our plan is to knock back hours on the pump once we are sure his electrolytes are stable. But we're happy to report that his emesis has stopped and he is full of energy and love. Ahn continues to be very cooperative. And we each continue on our paths.

Firsts

Ahn has outgrown her first set of clothes. She has experienced her first family hospital stay after being born. Bo has had his first admission in almost 2 years.

The heat, the increased activity, the excitement, all led to Bo's dehydration that we tried, unsuccessfully, to manage out-patient. The docs were able to stabilize him enough to send us home in record time. A great way to spend the weekend.

This has been going on since the week Ahn was born. We originally attributed this to adjusting to the baby. Bo was suddenly retching and dry heaving. This went on all afternoon until bedtime, ending with a little boy so lethargic and exhausted he could barely sit up for bedtime stories. Anyone who knows Bo knows that I am not exaggerating when I say that the first time I experienced his behavior like this I wanted to rush to the ER. I should have followed that instinct. Turns out that his potassium was dropping to a critically low range (too high or too low will lead to seizure or heart failure), low sodium, low chloride, high BUN, rising white count. Good Lord.

His beloved nephrologist left our home hospital and I was paralyzed with fear that the remaining docs in the practice would not be up to the challenge of managing Bo. And while I am still committed to following this guy, once we find out where he's gone off to, I am happy to say that his clinic does just fine managing Bo, thank you very much! And, I have to admit, I was highly skeptical at having an effective and efficiently managed stay that started with a Friday afternoon admission (who is even on service, will they bother to round, let alone look at the labs?) and in July (bring on the goat rodeo: new interns, residents, nurses, nursing techs, PAs, etc.).

Having a newborn and one in the hospital is not a relaxing weekend program I would recommend, but it was a LOT less sucky with the support of my MIL who graciously dropped everything to pinch hit for us. It also helps that DeVos has a hospitality house attached to it that had vacancies the day we were admitted straight from clinic. With all that gratitude, I have to say that I am out of practice cowing interns, residents, hospitalists and nurses. Usually the nurses I'm all good with, but I cannot get with the ones who insist on drawing labs or taking vitals on Bo at 4am. He is not the kid who falls back asleep. So save that part of your plan for some other baby.

Bo's nausea has been resolved, we can sleep through the night again (only punctuated by late-night nursing), and I can marvel at the speed with which my maternity leave is disappearing. The end.

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.

Comment on Japanese Regenerative Medicine: Intestines

While I see hope that medical advances may provide, if not a cure, a partial reprieve from some of Bo's medical complications from his condition, I felt a need to comment on the recent publication that seems to be making the rounds. This technology is great, and may prove to be a cure for those with gross anatomical short gut: kids whose intestines were removed due to NEC, or volvus, or even pseudo obstruction. However, for those of us whose kids are on TPN due to genetics (MID, Hirschsprung's, tufting enteropathy, etc.) this technology's usefulness only comes into play when a second step can be successfully accomplished: gene therapy. I for one don't think Bo needs more centimeters of the same non-absorbing surface that he currently has. And really, if that second step is possible, you might even hope you could bypass that step of needing additionally created artificial intestine and just apply the gene therapy directly (like the gene therapy that has returned some vision to blind patients whose conditions were genetically caused http://www.reuters.com/article/idUSTRE57B5PN20090812).

7-10 days

Well, Bo seems to slowly be recovering from his cold, and Jose seems to be getting worse. Hopefully we all come out alive at the end of the weekend. I'm already exhausted. Those pre-natal vitamins have kept me healthy all winter (knock on wood).

Throwing up all night

We are again sleep deprived and a little panicked. Took the boy to the pediatrician, who listened politely to our concerns. And with a completely straight face told us that a teaspoon of honey has been shown to be more effective than medication for toddlers with colds at night, and sent us home.

Just a cold. An ordinary toddler cold. Go home to your sleepless, coughing boy, and rest in normalcy.

I suppose it's just as well, seeing that I'm too uncomfortable to sleep much anyway.

Pain Appetizer

The hormones from post labor and delivery are in favor of evolution and against my personal comfort. Which is to say, that while I can intellectually tell you that 30+ hours of labor was a long time, those hormones make you forget the visceral part of the experience. I'm not even close to that experience. I'm just trying to get and stay asleep. Without excessive protest from my lower back. Ugh. I'm sure it was worse with Bo. But I don't remember this real-time, persistent ache.

Please help the pregnant lady!

Nuff said.

Preparing the Way

I remember when Bo was still very unstable and it was still questionable whether we would have to say goodbye to him before he would even be old enough to remember us, before he was old enough for us to actually make memories with him, long long long before we would even know what it meant to be ready to say goodbye. It was very hard for me to be around others' pregnancies. It gave me the irrational longing to be pregnant, the condition that kept Bo the safest. In my grief-striken reveries I would imagine having child after child, like each was a layer to buffer the pain. Insurance. Talismen. A continuous hormone high.

And now that we are more than halfway through this second pregnancy, it is a struggle to keep a lid on the hysteria. And I just can't stand being the exhuberant, joyful expectant mother- so much the thumb in the eye of who I was just so recently. And certainly, to any of those other mothers waiting to be mothers.

Maybe that's why I still follow and have so much empathy for the families I follow on the links included on this blog. They all walk paths that are the alternate universe we may have so easily been on, that we might find ourselves on again any day, that we feel we are on some days more than others, still. Saying goodbye, struggling with hospitalizations, searching for therapies, for answers, for support.

Life is uncertain. Anyone might be faced with these realities, but having been so close to them so long, breathing the same air, sharing the same bed with anguish, night after night. It can be paralyzing. And then this child, always on the move, gives a kick, tumbles, morning, noon and night. And we keep moving too. Grateful for the chance.

Maybe that's what they mean when they say someone "found religion." That you've found your stronger self emerging from the broken bones and ashes. I've seen the bright white of extra calcification where a broken bone has mended, stronger than before.

Week 22

The Baby Present is more than half-baked!

Housekeeping: I'm moderating comments now as someone's spambot found blogger, and I unlocked those videos in the last post. I'm not the most technology-loving person and I wasn't sure how to do it. But it's done. Also, I don't think there's a solution to the blogger layout cutting off the right side of the video, so if you want to see the full frame, you'll have to click the link in the vid after it's done to go to vimeo and see the whole thing.

Enjoy!

Hawaii on the Brain

Thinking of our Hawaii families expecting very soon!! Can't wait to meet you!

Gestation Redux

All told, I am feeling well, and continue to marvel at how lucky we are. Above are 9 and 10 week shots of "Baby Present," as Bo affectionately refers to it.

But the day-to-day behind my gratitude is a cascade of complex emotions: conflicted, anxious, exhausted; hopeful, grateful, contented. I see this picture of myself, 6 weeks pregnant with Bo, fit, happy and expectant. Today, at 19 weeks, there are times when the worry and fear leave me breathless (well, that and just the sheer size!). An age has passed.

It is scientific fact that I am and have been bathed in a sea of hormones which certainly has an effect. But it is also true that the gauntlet we have travelled from that sunny regatta day to this has been fraught with its own set of unforseen and unimagineable anguish and triumph. And that time's accompanying elevated cortisol levels. And sleepless nights, and tearful days. And moments of wretchedness and relief. While I wouldn't trade a moment of this life, I certainly wouldn't recommend it as a way to preserve your youth.

We are changed forever. And I have lost forever those days of unfettered, carefree joy. I have finally arrived at my adulthood, burnished, polished, glowing.

All Quiet

So, I'm having a mental block and just can't get pictures up. I figured a shout out to the world that all is quiet and well would be good just about now. Bo is sleeping peacefully. We've been approved for another 3 months of nursing care. Jose's got a sculpture entered in CCS' alumni show. And all the pre-natal testing has come back so far as normal. I'm at 17 weeks (but as big as 25!!) and am past the morning sickness and terrible fatigue. Now I'm just hampered by my size.