Thanksgiving Pity

Thanksgiving was very overwhelming for me this year. I was pretty much dreading everything about it, except for the eating part! It was hard for me to list things that I am thankful for this year. First and foremost I am thankful for my husband, Joshua. We been through a lot over the years and he's never given up on me. I know that he'll always be there for me no matter what is thrown at us. I am thankful we own our own house and a van. I am also thankful for my children... 

But putting those feelings aside, it was overwhelming because there are just so many people to see. So many people to talk to. And everyone is happy and saying "How are you!?" "Oh I see you're expecting too! Congratulations!" When two other women in your close family are also pregnant it makes things so much more difficult. Everyone assumes your baby is perfect and fine because why wouldn't she be? There is no history of any problems with babies in the family!

But there's also the people who do know your situation and give you the pity looks. That's right. I got my first pity look. Oh how I wanted to go crawl under a rock and cry! It makes it so much harder to see those looks! I can handle telling the facts. Joshua and I could talk your ear off about Spina Bifida and how it will affect Emsley. It is so much worse to only give us sad looks and NOT talk to us about it. Or to avoid us entirely. Please ask questions! Don't hide. Yes, it's an awkward conversation. Yes, it is a terrible situation. But alienating yourself doesn't make it go away. Not talking to us because you are uncomfortable or scared doesn't help. In fact, it makes me feel more alone. I will admit sometimes I don't want to talk about it. Sometimes it takes a few questions to get me to open up about it. And yes, you may say something that might offend me. But the point is that you are showing you care. By talking to us and asking questions about Emsley you are saying "I am here for you. You are not going through this alone." And that is what is most important. That's something to be thankful for.

All Day Appointment at St. Vincent

So today we had an all day appointment at St. Vincent Women's Hospital. Because we live so far away, we have to fit as much as we can into one day! Here was our schedule:

 

9:00am- Tour with Monogram Maternity- We really enjoyed the tour. St. Vincent is so beautiful and everyone there is very nice! She showed us where I will get prepped for my C-section and the waiting rooms. We were also shown NICU and we were pleased with how everything looked. I was totally lost the whole time and will not remember how to get here and there!

 

10:30- follow up ultrasound appointment with Center for Prenatal Diagnosis- Our ultrasound was my favorite part of the day (maybe besides lunch)! Emsley weighs 3 pounds 2 ounces and is right on target, according to the growth curve. I had the tech check her feet and they are not clubbed! But we were able to see very vividly her lesion level at T10 and her kyphosis. Her kyphosis starts at L4 and comes out of her back. She was in the perfect position for 3D/4D so we were able to watch our beautiful little girl practice sucking, and she even smiled 3 times! We were so happy! She is definitely a Burke baby, with Daddy's broad nose and hers turns up a little like Mama's. :)

 

11:15- Social Services Consult- We learned so much during this meeting, and a lot of our fears were eased. Obviously she will have a ton of medical bills for the foreseeable future, but hearing she will qualify for SSI and other benefits is a load off of Joshua's shoulders!

 

12:00-1pm  Lunch- YUMMY!! St. Vincent has a delicious cafeteria! Our food was made to order and it was so good, my stomach is grumbling just thinking about it!

 

1:15- Neurosurgery Consult- We weren't as impressed with this meeting. The doctor seemed really rushed and by some of the comments he made, it seemed like he didn't take the time to look at our records or Emsley's ultrasounds. So that was kind of a bummer. We did tell our nurse about it and we're hoping the next meeting is better. Normally she is with the patients but she was busy today. However, he did tell us that she would have her surgery the next day and that he will close up her back and place her VP Shunt as well. This was new to us, we were hoping to wait and see if the swelling would go down first. But due to her condition he said that she will need one and it is better to only have her go under anesthesia once rather than twice! 

 

2:30- Neonatology Consult back at Women’s Hospital- Neonatology nurses are the people who will take care of Emsley while she is in NICU. The head nurse explained to us the tests they will do (an ultrasound of her head, belly and kidneys), and kind of gave us an idea of what she will look like after surgery. They explained that it can be very overwhelming to see your baby with a tube down her throat and an IV in her forehead.

 

We finally left the hospital at 4:00! I was so exhausted from walking back and forth through the hospital! Our heads were so full of all the information we received! Poor Joshua had to rush to work and had to work over to make up his time! But I am feeling a little more prepared (hospital wise) for when she is here.

Baby Girl Has A Name!

We have finally decided on our little girls' name! We have been going back and forth for weeks trying to find the perfect name! I would find one that I thought was really neat, but Joshua would just look at me and say "no." He would have a suggestion and I would say "no way!" :) So it has definitely been more challenging! We wanted (and when I say "we" I mean me mostly) her name to have six letters and have a "y" in it like our other two kids, Kaleya and Reyden. Her name also needed to have a really great meaning. I can't tell you how many times I thought I heard a nice name only to look it up and see that it has a HORRIBLE meaning! So finally, after a little convincing on my part, we decided to name her...

Emsley Pearl Burke

 

I love it. I think it is so unique and that it goes really well with her big sister and big brother. Kaleya Marie, Reyden Todd, and Emsley Pearl.

 

Emsley means "gift from God" and Pearl is my paternal Grandmother's middle name! So both are very meaningful!

The Dark Valley

With everything that has been going on with us this last six weeks, we have gone back to my home church in Indianapolis. It's an hour away from us but I am finding it to be soo worth the drive. (If only gas prices were lower!!) I can see my kids blossoming and developing a love for Jesus, not to mention what it does to me to be back in the place where I grew up! To be surrounded by people who have known you your whole life and love you almost as much as your parents do! They are our biggest prayer warriors and I am so thankful for them! (THANKS UHBC) I am also thankful for our pastor and his wisdom! He is doing a series on Psalms 23. Coincidence? I think not. Yesterday he talked about the dark valley.

"Even though I walk through the darkest valley, I will fear no evil, for you are with me."

First he talked about how we will walk through the valley. We aren't building a house in the valley, God will lead us and see us to the end. He also talked about how grieving and mourning are important for a healthy soul. This was so important for me to hear. My valley is a very long, dark valley. Thanks to doctors, I get a glimpse into my valley. I can see the tests that I have to endure, the weekly visits to check on baby and we've already gotten a glimpse of the bills to come! *Yikes* But I can also see the C-section, the surgeries my baby will need and the two week stay in the NICU! This is terrifying for me and sometimes I just need to cry! And hearing that it is important just makes me feel so much better! Pastor also advised us to keep following toward the light and to guard our hearts. Anger is okay as long as we do not sin in our anger. We are to fear no evil because we have a BIG GOD and a little devil. Nothing can separate us from God's love. He will be there beside us through our darkest times, we need to just trust him and keep taking steps!

Even though I walk through the valley
Of the shadow of death
Your perfect love is casting out fear

 

And even when I'm caught in the middle
Of the storms of this life
I won't turn back, I know You are near

 

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

 

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

 

And I can see a light that is coming
For the heart that holds on
A glorious light beyond all compare

 

And there will be an end to these troubles
But until that day comes
Well live to know You here on the earth

 

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

 

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

 

You keep on loving
And You never let go

 

-Matt Redman

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