Tuesday, February 18, 2014

We Wait...

The waiting is the hardest. We're not exactly ready or prepared (physically, mentally, emotionally) for what all will go on at her birth, so you would think we're ok with knowing we have nearly 12 or 13 weeks left in preparation for her. And yet, each week, waiting is the hardest. Sometimes it's all I can do to distract myself and get through the week until the next heartbeat check appointment. I live for Mondays. I live for hearing that heartbeat, for making sure we're growing right on schedule, her and I both. For the reassuring answers from our doctor to even our hardest questions that week.

And yet, oddly enough, we've hit a spot where other than ultrasounds every two weeks to measure growth, the heartbeat checks are all we can do. We scheduled my 28 week labs for a couple weeks from now. We plan ahead with our doctor that we'll do all the routine stuff, even for the most un-routine pregnancy. But otherwise, it's week to week and waiting.

Please don't misunderstand...yes, we're so thankful for yesterday's appointment going good and hearing a strong heartbeat as my facebook status said. But it was also hard for us. We had so many questions after KC, and sadly, not all of the reports from those doctors were in yet for us to discuss with our doctor. That was a bit frustrating. We're working on this puzzle, and each doctor in KC has a piece or two, and we're waiting for them to put that puzzle together and send us the final product so we can look at the whole and not the pieces. Dr. P did an amazing job answering all of our crazy questions and concerns, but again, there was still hard questions for us to ask and him to try to answer. It was a good appointment, we heard her heartbeat, we were encouraged and reassured that our doctor didn't believe I'm not necessarily at any certain higher risk of preterm labor or stillbirth based on her condition(s). But words like preterm labor, signs of it, what to do, what will game plan be, what happens if Chloe drops below the 10% percentile on any of these scans...hard questions were still asked.

We have a diagnosis:
*She has a rare chromosomal abnormality:  Mosaic Trisomy 22.
*She is small. IUGR is the technical term. Inter-Uterine Growth Restriction.
*She has Tricuspid Atresia.

Many look at it and say ok, we have a diagnosis, we have a plan to deliver at Children's, she'll get help. Things are good, things are looking better, things are improving. Great! Yay-then can do surgery for her heart!! So glad to know there's no more club foot! And so on. Please know, we are so thankful to the Great Physician for these things as well...

However, please know, there's still this cloud hanging over us. I'm suddenly picturing the Peanuts character that has that constant rain cloud over him. It's somewhat how we feel. We function, but it's not always up to par. Some days we go through the motions. Other days are good, depending on what our definition of good is. Yesterday Alan got us out of the house, took me and the kids to lunch, ran errands before dropping off the kids at the sitter for the appointment. It was a good family day. But it still involved an appointment where there were some tears shed (lighthearted laughter too, thankfully) and prayers said. The kids fell asleep at 6pm on the way home, and were easily transferred directly to bed, so we had a sort of in-home date night to end our day, watching Olympics together, playing Wheel of Fortune on the computer together, having a late dinner together. It was a good day. Probably the best day we've had as a family in a while. But there was still that cloud over us...even our best days can be challenging.

So we have her diagnosis, but we don't have her growth each week.

We don't have a set-in-stone birth plan, and won't till we're closer to...well, hopefully full-term. We can't have one because that's the Lord's timing.

We still don't know if she'll decide to come early. We're still anxious about preterm labor. I'm still very anxious what to watch for, or what is a normal contraction vs. labor contraction since I didn't have them with the other kids. Sometimes the slightest Braxton Hicks can bring worry to me.

We're still trying to explain this to the kids. We're still trying to hold back tears when our son asks us how much longer before Chloe comes and can she come tomorrow? Yesterday he said, "Today is Chloe's birthday!!!," to which I hollered back, "Better not be!!!!"

There's still the looming thought of how we'll make it through all of this financially.

We won't know till they can monitor her at birth if she'll need that first surgery or not.

We don't know how she'll feed, and have been told the possibility for a feeding tube, especially with the cleft lip, and feeding/gaining weight before surgery is vital.

We don't yet have the education to know how to medically care for our own sweet daughter once she does make it home with us.

There are still so, so many questions at the back, and front, of our minds constantly. So when people ask how we're doing, and we say one day at a time, this is why we answer that way. Each new day brings a new set of questions and thoughts, and prayers. And if we say we're ok/fine/not so too bad today, then please just smile and give us a hug, and let us just smile back.

And in the meantime, we try to have hope. We try to trust each bit of this journey, but I can't lie, I have my moments.

Earlier into this journey, a dear friend who I know we have the friendship where we can ask each other pretty much anything, said, "I honestly don't know what to say. Can I ask, what would be helpful to hear? What are things I shouldn't say to someone going through something?" I loved her honesty, I think more than anything anyone has said to us thus far on this journey. Today Alan happened to listen to this, and it hit home with us, and not just in light of our situation, but for our hearts to know how to respond to others going through trials as well (good learning for us as well). Please take the time to watch, listen, and consider it. And please know how grateful we are to each of you following the blog and praying us through this.

And on a lighter note: Alan is trying to convince me to let him grow a mustache like that. I vote no.

What Not to Say to Someone Who's Suffering from The Gospel Coalition on Vimeo.


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