Bird on the Street

Another Surprise

12:50 am

I’ll keep this brief since I’m sure you all have better things to do than worry about my uterus.

I’m having two boys. Two. Boys. I still don’t believe it–but I saw the ultrasounds and there are some things you can’t deny–boyhood is one of them.

I love the idea of a house full of boys, but I had started to dream of little pink dresses, so I’ll have to adjust that idea a little.

Hubby says, “it’s real now.” He somehow missed the first 17 weeks of this adventure.

I have no idea about any abnormalities they might have seen. The tech had both babes done in one hour, though, so I took that as a good sign. One had a faster heart rate–160 and that makes me nervous since Charlie’s heart rate was always high and then it went super-high and almost killed him, but I looked online though and it seems 160 is perfectly fine. I will talk to the doctor next week and let him know my concerns. I’ve decided to decline the triple screen–if the ultrasound finds anything, I’ll deal with that, but I don’t want any invasive testing, so the triple screen is a waste of time.

The boys have first names, but not middle names yet. We were forced to throw out Henry because my husband’s boss is named Henry and it felt weird. We went a little wild card on that third name, but we love it and that’s the most important thing.

So. . . the boys will be Louis and August a.k. Louie and Gus.

Can’t wait to meet them. ultrasound of twins

Filed Underpregnancy

Priorities

12:43 am

Not even sure if I’ve mentioned this yet, but I was finally able to get Charlie into a private PT program that has a Lite Gait. I’ve been intrigued by the Lite Gait for over a year and when the spot opened up, I had to take it.

We’ve been working for a couple of weeks–starting slow with standing, kneeling, and even a spin on an adaptive trike.

Seriously, what is this thing?

There’s a little boy who’s about seven and who also has cerebral palsy, that comes for occupational therapy at the same time we’re there for physical therapy. He’s engaging and sweet, he speaks clearly with all the therapists he meets. I was looking at him this afternoon rather closely as his therapist decided to work on trunk strength and I could see that his abilities strength-wise were nowhere near Charlie’s.

And when I went to my mother-in-law’s for dinner later, I was talking about the little boy. I marveled at how much he could do, but was especially amazed by his speech. I mean, he walks with a walker, but the ability to speak! Incredible. It wouldn’t matter if he were in a wheelchair–he can get his thoughts across.

Take away his iPad, and he'll thank you like this.

And so my wheels started spinning. Walking has never been a true goal of mine. Yes, I want Charlie to bear his weight on his legs to assist with picking him up, transfers, and so forth, but the other day when the doctor said for the first time, “Charlie might walk,” well, it wasn’t the moment you would expect. It was fine. I’ve made my peace with the chair and will A-Ok if it lives with us forever.

So why are we in walking practice? This ridiculous I know–we’ve just started!–but is that really where I want to put our energy? our time? our money?

Two weeks ago, the physiatrist handed us a fist-full of prescriptions–he pretty much told me to go after whatever I could. He expressed his belief that Charlie really needs to work on his communication. The next week I spoke to a local speech therapist who is familiar with the iPad and Proloquo to Go, but who said that working on augmentative communication with a child that young could be difficult. A few days later I asked the neurologist and she said he’s not too young and said the best place in the area is one that’s about an hour from my house.

I’m confused. I’m worried. Worried that I’ve lost focus of what I what our true goals on. Worried about changing gears and having it be a colossal waste of time. Worried that this is pre-baby panic. Worried that I could sign him up for this great speech program and then get side-lined by bed rest.

I’ve never been this unsure before. Never been so hesitant to take a step.

I keep waiting for a handbook with all the answers to show up and it’s still not here.

Pregnant woman standing with hand on hip

More people with whom I can mangle the art of parenting.

Filed Underdecisions

One Moment

11:39 pm

I’m sitting in one of those hospital wheelchairs that are usually littered about the Emergency Room entrance. I ‘m in my son’s hospital room; an imposing machine takes up a majority of the real estate with tubes of bright blood flowing out and returning to it. A giant dial turns methodically and a man stands guard–his sole purpose to monitor this machine, the machine that is keeping my son alive.

I am not at his bedside, though. I am sitting in my wheelchair, my husband standing behind me as we wait to hear from the doctor what we already know will be bad news–they had warned us over the phone when they requested our presence at the hospital.

The doctor sits across from me. He is seated so we are eye to eye. In the background hovers a woman who I will later learn is a social worker and she smiles reassuringly. There are a lot of people in the room moving here and there, but I can only focus on the immediate. Is it possible that the lights are dimmed? Or is that just my memory softening the moment a little?

The doctor begins talking about brain bleeds and about the grades of bleeds. I’m in a haze of medication, but I know that this is not going to be a conversation with a happy ending. A grade I is the best type of bleed and grade IV is the worst. I say a quick prayer that it’s a III–anything but a worst-case scenario, but my prayer is too little, too late, and the doctor reveals that he has had a Grade IV bleed. And then the discussion turns to “options for removing support.” This is, of course, a euphemism for “let you baby die,” and it is at this moment that my ears stop working. I am unable to process the words as the doctor lays out these “options” for us. I do know that I now hate the soft-faced man who would like to help me end my child’s life.

The doctor stops speaking and I turn to my husband unsure of what we are supposed to be deciding when all the options lead to a dead baby. My husband, however was unwilling to choose–unwilling to select from the myriad of bad options and says, “we’ll wait until all the tests are done.”

The tests? My mind spins and I look up at him as I try to remember what tests they could be doing. Of course–THE test. Already pronounced “likely brain dead,” they will do an EEG to verify and they are in the process of hooking him up to a million tiny wires as we sit there. The other doctor in the room–a neurologist in blue scrubs–assures us that it is a foregone conclusion. He averts his gaze after making this statement and becomes very busy with the wires.

My husband says we will wait and in that instant I know that is the right decision. We will support our son–a life we waited for with high hopes. We will handle things if they take a turn for the worst, but we won’t speed up the process. We are his parents.

Everything that we are now is a result of that instant, that decision.

And there are no regrets.

baby in hospital

This post was written in response to a link by The Red Dress Club:

For this week, we want you to imagine that after you have died and your daughter/son will be given the gift of seeing a single five-minute period of your life through your eyes, feeling and experiencing those moments as you did when they occurred. What five minutes would you have him/her see? Tell us about them in the finest detail. Let’s have a maximum word count of 700 words for this post.