Emsley Pearl

Look at those cheeks!

See? Her nose turns up like mine...it's not ALL Daddy!

Perfect full lips!

And a smile that is already melting our hearts!

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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Welcome Back To Me!

Well hello there! It's so good to write to you again!! We have had issues with our internet company and, let's face it, it's just too hard to blog on a phone! So we finally have everything resolved and I am back! Now let's see...it's been three weeks since my last post! Where to begin?? 

**several minutes later**

In the weeks that have followed our trip to Cincinnati our life has been pretty uneventful. Kaleya had Fall Break from the 12th-20th and I completely spaced it. I woke up at 7:15am that Monday and got  her ready for school! We hopped in the van and drove the looooong three minute drive to her school and were shocked to see no cars there!! OOPS! She was not happy about missing two weeks of school!   
We have seen some progress in Reyden's potty training...sorta. I mean he has only pooped on the floor TWO times and he's only gone potty on the floor uhhh yeah I lost track of that number. But I have seen a real difference this past week. He knows he gets fruit snacks when he goes in his toilet so he will sit down and push just as hard as he can until he squirts out just a little bit of potty. Then he will look up at me all excited and say, "Fruit snacks?!" Haha

So I had an appointment on the 22nd at St. Vincent for a check up ultrasound and a meeting with our genetic counselor afterwards. Our ultrasound went really well they just took measurements and made sure everything was ok. We were able to just watch Baby move for a little bit and we got to see the sweetest picture ever!!

Aaaaaggggghhhhh! I could just go crazy looking at that sweet little face! Baby will look just like Kaleya and Reyden. Now I know that most everyone is thinking, "What is the gender!? Tell me, is it a BOY or GIRL??" Well we are pleased to announce that in the Burke household the tie breaker for Girls VS Boys is..........................GIRLS - 3 and BOYS - 2 Our baby is a GIRL! Kaleya and I are so excited! We have the power! Muahahaha! And nooooo we do not have a name picked out. It is SOO HARD to settle and agree on one! However we do know that her middle name will be Pearl after my paternal grandmother, one of the strongest women I know! We just can't seem to find the perfect first name for someone who is going to be so special! 
So we talked to Erica about what will happen regarding my care from here on out. St. Vincent will take over my care at 32 weeks. Until then I can continue to go to check ups with my regular OB, but I will go to St. Francis for my ultrasounds. My C-section will be scheduled at 37 weeks, so we're looking at the last week in January. So we will have Daddy's birthday, Kaleya's birthday, AND baby girl's birthday! YIKES! I also found out I have to have ANOTHER AMNIOCENTESIS before my C-section to make sure that Baby's lungs are developed and she is okay to come out early. WHAT!? I am so not looking forward to that! One of the doctor's was all "it will be ok though, not like last time." Psh. Yeah you keep telling yourself that buddy! :/  
So we will go back to St. Vincent in 4 weeks and we will have a jam packed schedule that day. They will give us a tour of the facilities, and we will be meeting with as many of our doctors that are available. All I am thinking about is when we're gonna eat...and Erica said they may pay for lunch...I plan on holding her to that! ;)
In the spina bifida sense of things there's really nothing to tell. When I am not talking to doctors or planning appointments I feel like a normal pregnant woman. A lot of times I even forget! She kicks (or punches) so hard my belly actually moves and she is super active! I am 25 weeks pregnant now and really not as big as I thought I would be. And I haven't decided if I like that or not...



Let's Get Real

I've been told that I seem to be handling this pretty well. And up until a few days ago, I really thought I was. But....the truth is, I'm not. I'm struggling. This is really hard. We spent Saturday with my family at the zoo, and it was really fun. My sister and her husband were there with their chubby baby girl. I love RJ with my whole heart! She has the sweetest smile, and she thinks Uncle Josh is so funny (looking). But after our stay at Cinci all I could see was RJ's huge, strong legs. Watching her kick them when she was mad, laughing at her little fat rolls...*sigh* All the while knowing my baby -insert positivity here- has a very likely chance that their legs will never move and will be very thin. I think about my other sister, and how she is not too far behind me in her pregnancy. Then I think to the future. I see 5 kids. All of them beautiful and smiling at Nana for a picture. Just one is different. I don't want to further indulge in my negativity, because it is true, the doctors can't technically predict what our child can or can't do. They can't say what nerves were damaged. And all the Spina Bifida stories I see show happy kids loving life. But it's hard for me still to accept it. Like when I play "This Little Piggy" with Kaleya and Reyden... :/

I get so ANGRY at myself sometimes though. I should not feel this way. I should be grateful I have a baby, right? The book they gave us talks about the stages of grief. It says that it is perfectly normal to grieve as if you have lost a child. Because if you think about it, you have lost the dreams you had for that child. Everything you pictured in your future is completely different now. It's OKAY to cry about it. Now do I let my grief swallow me up and consume my life? Of course not. I have two amazing kids to take care of! Today we made homemade paint! What I am saying is (basically to myself) that it is okay to be sad.

Yesterday we found out that the buyers on our house are backing out. They submitted a mutual release because we said no to replacing our perfectly good roof. Yesterday was hard for me. I didn't understand why God was letting this happen! Wasn't this His plan? I felt like every time I came to grips with where He was leading us, He would turn down another path. Why would he let us lose this sale? Haven't we gotten enough disappointing news this week? My mom saw my doubt and immediately told me to look up Jeremiah 29:11

""For I know the plans I have for you," declares the Lord,

"Plans to prosper you and not to harm you, plans to give you hope and a future.""

 

This is what it says in my Life Application Study Bible about verse 11. "We're all encouraged by a leader who stirs us to move ahead, someone who believes we can do the task he has given and who will be with us all the way. God is that kind of leader. He knows the future, and his plans for us are good and full of hope. As long as God, who knows the future, provides our agenda and goes with us as we fulfill this mission, we can have boundless hope. This does not mean that we will be spared pain, suffering, or hardship, but that God will see us through to a glorious conclusion."

 

I read this to Joshua when he came home from work and we felt a peace about us. We feel that the Lord is telling us to stay. This is our home. This house is where we are most comfortable and will be able to take care of our special needs baby. When we discussed this and decided on it, it was as if a small piece of the weight had been lifted from my shoulders. I can breathe just a little easier.

 

Trusting in God is a daily battle. I have my good days and I have my really dark days. But I know that my family and church family will be there for us, reminding us, should we ever forget, that God will see us through to our glorious conclusion.