Saturday, April 12, 2014

Children's Visit #3 Recap Part 1

I've tried multiple times to write this post.

I tried the day after our visit, but didn't know what to say.

I tried writing it in my head the other day so I'd know what I wanted to say and could blurt it out and get back to the kids.

I tried writing a raw version-from the heart-but it made even myself nervous ;)

I tried writing a normal facts only post, but got a call from Children's in the process of writing it. Literally had to take notes in the blog "new post" page. Glad I didn't accidentally hit the "publish" button on that one.

I'm trying now, but with funny google text messages coming through from my husband, who is downstairs with the kids, and making me laugh and get distracted.

Sigh. I'll try again...

I don't exactly know how to sum up our visit last Monday at Children's. We went in thinking simple, easy ultrasounds just to check on things. We only had regular ultrasound, the echocardiogram on her heart, meet with social work about the Ronald McDonald house, and meet with Palliative Care team {didn't really know why or what we'd discuss there, but weren't intimidated}. We were mainly just thankful it was only a morning of appointments and not all day this time.

But we were surprised at how the day turned out.

First ultrasound went great. Chloe was in vertext (head down) position and got good images and passed her BPP (biophysical profile that checks four specific things) right off the bat. Everything else looked good. Weight made us nervous, being that she was only still at 2lbs 11 or 12oz, but the fact that she put on something this month made us happy.

But then OB came in and was asking if we had dates yet to come over. Nope-that was to be discussed today. So he said that most likely we're still on for coming over at week 38, but that he's a bit concerned at her slowed growth. I asked in what way/how much should she weigh and he said at this point she should be between 3lbs and 3.5lbs...she hasn't even hit the 3lb mark yet, and it made him nervous. He talked slightly about the possibility of us coming over a bit earlier, but sounded like mainly for keeping me close to the hospital and monitoring. The OB left, and I lost it. Not really sure why it hit me at that moment of all moments because he didn't seem too concerned just yet, but he did say it would greatly depend on the round table discussion with the other doctors to see what they thought, and that wouldn't be till later that day after we'd left. Thankfully one of the nurses handed me kleenex and then tried to take my mind off it by complimenting me on my shoes, which worked, a tiny bit.

Next was fetal echocardiogram {aka ultrasound on Chloe's heart}. We were happy to finally know she was in vertex position to get good images, but in true Chloe fashion, the sonotech got started and said, "Um, no she's not-she's transverse." Wait-what? She was JUST vertex at the last appointment! Yep. She flipped around somewhere between the two ultrasounds, and now was back in a not so good position for images, which is exactly what we got...not so good images.

Chloe's fetal cardiologist met with us next, and her nurse coordinator Amy came with her. Amy grabbed a box of kleenex to have ready at hand, but Dr. Swanson laughed and said we shouldn't need those today. She started in repeating what Chloe's heart condition is just to review, but somewhere in discussing this, she started talking worst case scenario, but without actually saying those words. Instead, things like, "...most kids I focus on heart, but Chloe's condition, we look at all the issues, and she has a lot stacked against her. I can't say 70% or 30% or what chance since we don't usually have cases like Chloe's, but there is that chance she might not make it home." Kleenex. NOW. Wow...didn't see that coming. The term stillbirth even came up again, along with a lump in my throat.

After that appointment we sat in the waiting area with tears and thinking how in the world this turned into worst case scenario day. We met with social work next, which wasn't so bad, and then palliative care came in. The idea of palliative care (or PACT Team) is to be a liason between the doctors and us-to give us a voice on what procedures we do or do not want Chloe to have, to explain medical stuff, etc. It is made up of (and I could be wrong) but a social worker type person, and two doctors. We met with the social worker person and one of the doctors.

Wasn't sure I wanted to share the weight of this next appointment here on the blog, but I feel without sharing it, the weight of what we're going through would be somewhat sugar-coated...and I've committed to keeping this as real as possible so that others know how to be praying for our hearts...

The social worker with PACT started off asking how our morning was so far and I burst into tears and explained it was turning into worst case scenario day and we were drained. She listened to us share why, then asked what our hopes are for Chloe, and we answered get her healthy, get her home, figure out the new normal for our family. She responded good-you understand there is ALWAYS hope. That hope might change, but there is always HOPE. Then she said, "What's your biggest fear?" Without a beat we said, "We lose her. She doesn't make it." The PACT lady said something to the effect of good that we understand that possibility. The she asked, "And what are your wishes should she not make it?" Excuse me? We just said we were drained from "worst case scenario day" and you want us to spontaneously answer that question? We shook our heads in disbelief and even said we didn't exactly understand how to answer-what did she mean by our wishes? She said, "Do you want to hold her? Do you want to be alone with her or have family with you? Do you want pictures?..." The questions droned on. I think I used half the kleenex box in about two minutes flat. We explained that we spent two months in limbo thinking we were going to lose her at any moment, and that in that time yes, we did discuss these hard questions, but that now, we were choosing to Focus On Life. We were trying to stay POSITIVE. To keep FAITH in all of this, and that we weren't in denial, but that with all due respect, we weren't ready to discuss this today. This lady was a very nice and caring soul, and I know it was probably just protocol, but she explained further that they needed something on file if the time comes and then we could put it out of our minds and stay positive. Our response was no. Not today. Too much to discuss. Too much to think about and we'd do that in our own time.

No parent should EVER have to discuss their wishes should their child parent should ever have to bury a child...can't even explain the heartache of this conversation that day...and in our case, we've already lost one child to miscarriage...we can't fathom losing another baby...

That was the last appointment we had that morning, and it left this incredibly dark hue over what we thought would be an easy morning of appointments. We didn't know how to take the news and assumed all of the team was just trying to prepare us for the worst...just wish we'd know that's what we'd be in for that day so we could prep our hearts and minds and pray for peace in our hearts for those discussions.

So thankful for my amazingly supportive and focused husband, who, repeating the words of a great parenting message we'd listened to on the way over to KC, reminded me...but God....

There is so much we don't understand, but God does.
There is so much we're afraid of but God is already ahead of us in this and He knows our fears.
There are so many questions but God knows the outcome and He'll work all things for the good of those who love Him.
The doctors let us know the worst possible, but with God all things are possible.

Trying to focus on the fact that we can hate all of this, want to run, want to hide, want to scream, but instead choosing to focus on the fact that God is still present, even now. He will not leave us or forsake us. We will hide in the shelter of His wings.

"When I said, "My foot is slipping," Your love, O Lord, supported me. When anxiety was great within me, Your consolation brought joy to my soul." Psalm 94:18-19


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