Well this sucks.

I think we've said that statement a few times in the past year, but about a hundred or more times in the past weekend.

This sucks pretty much sums up the emotions and feelings and everything that the past weekend has brought us. Sometimes I paint an image for you of where we were, the emotions that we felt, but it's hard to relive this past weekend without a huge amount of dizziness and world spinning type feelings.

When I didn't know by Thursday the results of the MRI's (heart and head) for Gabe, I was becoming a little interested in what was taking so long, since they had told us that it would be the next day, and it had been two days at that point.

The Neurology team wanted to schedule a meeting for Friday afternoon at 2pm, and something about that made me wonder aloud to Nick... "Why didn't they just tell us. Don't they usually just tell us his results? Why a meeting, is there something wrong?" And Nick told me he didn't have any feelings about it. I brushed off my fears, and we enjoyed Thursday together, getting mistaken for newlyweds (though I explained a month and a half apart can really rejuvenate a relationship, haha)...

Then the next day came around, I held Gabe for a while and we waited for Neurology (and we thought cardiology too, but they didn't have the availability). Around 2pm, one of the doctors watching over Gabe in cardiology came in to talk to us. She was talking to us about his mitral valve news, that it was too small after all of this, and needed to be replaced on Tuesday (too soon!, I had thought) About his bleeding and their concerns that one of his lungs had been punctured in the cath lab causing some of his issues. Then, in her last sentence, my whole world changed. "And with the extensive damage to his brain." I'm not sure where that sentence was headed, but I'm sure the blood drained from my face at that moment.

"Wait, what?" Either Nick or I asked, though I'm not sure which one of us now.

"How much do you know?" She asked us...

"Nothing. We don't know anything." Nick said.

Then, as she explained what she was talking about, I felt the sudden feeling that I hadn't felt before, that I would surely pass out at any moment. The room was spinning around my face, my adrenaline was rushing, my heart pounding, and her sentences made no sense to me. I was practically certain my body was about to give in and leave me in a pile on the floor.

I stared at her, not at Gabe, and I was both angry that this was the way we found out, and relieved that we were slightly prepared for the meeting. I didn't cry, and I resolved very much at that moment not to cry.

Then, the neurologists came in at 3pm.

They told us that on his scan he had suffered severe cerebral atrophy, globally- and they didn't know entirely what this meant for Gabe. Some babies, they said, still remain mildly unchanged.... and the ones they knew of (which were very few) typically didn't do 'a lot' for themselves. Including walk, talk, communicate...

I thought of the signs Judah and I have been learning for Gabe. We watch signing time every night before bed.. Judah signs a lot of things... But the world around us still failed to stop spinning for those moments.

The doctor chimed in after the neurologists gave their small and limited information. "This doesn't change who Gabe was 2 days ago." I choked a little as I said. "I haven't seen him awake since he was 7 months old. I don't really know who he was 2 days ago." and they all looked at me with a very sympathetic look... and I began to sob. Between sobs I apologized for sobbing, they apologized for the news, I told them not to apologize, I told them they had the worst job on the planet and I felt really bad for them... and then I asked them "What are we supposed to do with this information?"

"That's a tough question. Some parents choose to ignore it, based on the variable that it holds, that it could mean nothing for your family, or it could change the way you proceed." Quality of life, compassionate care... were mentioned for the second time in his life.

I sobbed some more. "I never thought we would be here again." I said. Then I described for the doctor his entrance to the world and the moments we were given a 1 percent chance at him surviving... Nevertheless surviving to be here- once again... staring at an option that didn't seem like much of an option.

Nick's parents had surprised us with a hotel room that night. We went to the hotel room and I cried. And I asked for hope on facebook until I realized that I had posted in a group that was visible to everyone. And then the cat fell out of the bag.

"I would take Downs Syndrome any day. It's nothing." I recall saying at one point. Which I do believe. And then I said other things... like "I wish I had one more day with him before all of Boston happened. One more day with the Gabe we brought into this."

So many questions arose in our minds.

Mostly fears.

And then the beautiful part happened for me.

God put me up high enough to see from a distance the fight we have been in for the past year. And it was beautiful.

"We have gotten to actually fight for something, Nicholas. How many people get to pour their whole heart into something and fight for it? And we had three months of complete time with Gabe, with Judah... our family. It was worth it, we always said it was worth it, for one day, for one week, for one month. We always said it was worth the fight for even one day."

But nothing was clear to us. To stop treatments now, what would that even mean for Gabe? To stop repairing his heart?

Today, walking into our meeting with Dr. Del Nido, we didn't know what we were going to say, or do, but we had been praying... Praying that God would direct us one way or the other, because we could not make the choice to let our son suffer in either direction.

Dr. Del Nido made it clear to us. He said that the MRI was such a variable thing. That it could mean nothing, that he's seen kids with worse scans walking around talking... And that he's seen kids with less on their MRI's that were wheelchair bound. He said to stop now, to just stop surgeries, would be a slow and painful thing for Gabe, just waiting for the next thing to 'go wrong', whether it be infection or a sudden turn for the worse, he considered it not an option.

We asked him what he would do if Gabe was his son, and he said with certainty that he would continue forward, and I believe him very much.

We praised God for those answers, which confirmed our hopes and left us with the big risk and big reward scenario.

No matter what the future holds, my hope is in God for whatever he provides. Whether Gabe is here for a day, a month, a year. We will do our best to give him the best of ourselves. Just like we always have. And we will think of our whole family.

Thank you for your love, support and prayers as the new chapter has dawned on us.


Aleisha said...

I found your blog through another blog and have been for several months now... I am praying for you and sweet Gabe daily, and will continue to. Pray that God continues to give you strenght and encouragement for each new day, and that he would give the drs all the wisdom and knowledge they need to take care of your sweet baby, and that he help Gabe through all of this. Proverbs 3 :5, 6 , God bless you

Carrie Delaney said...

You are right that you are FIGHTING for something. You are fighting for your baby and whatever happens, you will know you did EVERYTHING you could to give him the best life possible. I miss Gracie every minute of every day, but one thing that gives me comfort is that we did everything we could have done for her. That's all a parent can do.
Gabe is so young and clearly a fighter. I will be hoping and praying for the best.

Hope's Blog said...

Continuing to pray for your family. I am so glad you have Dr. Del Nido in your life. He is right with the MRI...you just never know. You are beautiful for giving him the chance to show you how strong he is!

Mandy said...

Yay for Dr. Del Nido!! I so agree with him, and I praise God for his sensible, heartfelt answers. Babies are so resilient. I know you've heard that a million times by now, but only God knows what that sweet little brain in that sweet little boy is capable of. And His plans are so very, very good.

We had those conversations so many times...with neurology, with cardiology, etc. I can picture it too clearly...and yet God is sovereign over it all. The story He is writing in Gabe's life is a beautiful one...and all the waiting is part of it...but so very hard. I am praying for you, thinking about you all the time, and looking forward to seeing what God does through your sweet little guy's life.

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