Hello, Norah Mae.

Our StoryJoanna Zuidema1 Comment

I've been both excitedly awaiting writing this post, and dreading it with every fiber of my being.

I know many of you follow us on Facebook and Instagram, but there are also those of you who do not. Because I posted most frequently on Facebook, I'm sharing those posts with you to act as an overview of the joy and heartbreak that has filled our past few weeks. 

February 28th, 3:18pm

Alright, Team Norah - bring on the prayers! Its induction time! 

Here we go. 
We're in God's hands now.

March 1st, 6:44am

Well, we made it through the night with some ups and downs. My body doesn't seem ready for labor and Norah doesn't respond well to the induction meds. We'll be chatting with a doc from MPP at about 7/8 regarding next steps. 

Our guess? C-section. 
And we're ok with that. 

Oh and the picture? Our lovely view. But really, the designer in me doesn't mind :)

March 2nd, 5:36am

Norah Mae was born at 10:58am on 3/1/17 via c-section, weighing 6lbs 6oz. 

I am recovering well and Lane is able to sleep and eat more now.

We have a tough road ahead of us and don't know what the next days will bring; each moment we have with Norah is a miracle. 

We'll post more as we are able. Love you all and thank you for your prayers ❤

PS - NICU nurses are amazing - that's where she got her bow :)

March 3rd, 10:44pm

Trisomy 13 - we knew this was a possibility from the beginning.

There are miracle T13 kiddos that live for years, but that is not going to be the case with Norah. She has so many abnormalities that her body wouldn't be able to handle even the bare minimum of the required surgeries. If she had a simpler case of T13, her prognosis would be better, but she has 5 severe abnormalities that would each require an incredibly intense surgery. 

What does this mean? 
This means no surgeries for our baby girl. 
This means we won't be bringing her home.
This means each moment we have with her now beyond precious. 
This means planning our daughter's funeral while I'm still in the hospital recovering from the c-section.

We prayed for clear direction once she was born, and this diagnosis gave us exactly that. God knows what we need, but sometimes blessings just look a little different than we expect. 

Although His plan makes no sense to us right now, God is still good. Even in this, God is good.

Joshua 1:9 "Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go."
Isaiah 43:2 "When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you."

March 5th, 11:20am

You're 4 days old today, baby girl. 

Happy due date.

March 5th, 7:33pm

I don't know who's holding on tighter - Norah or her daddy ❤

March 5th, 11:47pm

I could stay here forever.

March 6th, 10:24pm

This weekend, a lot of friends and family met Norah. 

Today, at 4:06pm, in Lane's arms, Norah Mae met everyone waiting for her in heaven. 

(This photo was from Saturday, thanks to a wonderful organization called Now I Lay Me Down To Sleep)

Lane and I invite you to join us in celebrating the life of our sweet daughter, Norah Mae Zuidema on Monday, March 13th. 

March 13th is Trisomy 13 Awareness Day. Trisomy 13 causes there to be 3 copies of the 13th chromosome, that's why the awareness day is 3/13. No, we did not plan this - we found out after posting the service information. Norah clearly had a hand in planning her party❤

Though her life was short, Norah's story impacted people all over the country. Now we tearfully rejoice that her story continues on in heaven. 

We celebrate that Norah is watching over us in a perfect body, a painless body, a body no longer defined by a diagnosis. She is being raised by angels and we will one day see her again. 

God is good. 
Even in this, God is still so good. 

Lane & Joanna

Cards can be sent to:
1810 Donegal Dr #4
Woodbury, MN 55125

We request that in lieu of flowers, donations be made in Norah's honor to one of the following organizations:

- Ronald McDonald House at Children's Hospital, Minneapolis [this was our refuge during Norah's life]
- Now I Lay Me Down To Sleep [An incredible organization which provided us with free, stunning, professional photographs of our precious daughter that we will cherish for the rest of our lives]

Many have asked if I will continue to post on the blog.

My response?

Norah has given us a beautiful story and while we have shared much of it already, there is so much more to tell.

I don't know what to expect in the coming days, months, or years; I can't predict the future and 'plans' are a laughable concept at this point.

What I do know, without a sliver of doubt, is that Norah and God aren't done yet.
I don't believe that Norah's story will ever be 'finished'. 

She wouldn't let it be that simple.