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.

The Cold Hard Truth

Today is the day we meet with everyone and talk about our results from yesterday. We go up to our nesting room in the Fetal Care Center. We are a little early so we sit and watch tv and blog. First we see Erin, the genetic counselor. She asks us a TON of family history questions. For most of them we have no idea. It's just not something our families talk about. We are gonna have to make everyone in our families write down their health issues so we know for the future! After we answer her questions she tells us a little bit about our results, kind of prepping us for our meeting with all the doctors. First she talks about our Fetal Echo and says that everything looked perfect with baby's heart. (YAY) She talks about our amniocentesis results and says there are 46 normal chromosomes. No doubles, missing or broken ones.  (YAY again) Erin then tells us that the ventricles in our baby's brain are measuring 14 mm and 20 mm. Anything over 10 mm is concerning. She moves on to talk about the lesion on our baby's back. She tells us it is myelomeningocele the most severe form of Spina Bifida. According to the ultrasound, the opening is pretty large..... Ugh. It is so hard to say!! Ok the cold hard truth. Our sweet innocent little baby has a lesion that starts at T10 and ends at the sacrum. For those who don't know what that means, hang on. Caryn explains more. Erin makes sure we are ok with this information before she leaves.

Then we meet Caryn. She is a nurse who works with Spina Bifida patients. She can talk about what we can expect for the future. She gives us a book for children with Spina Bifida and flips through it pointing out the circumstances we can definitely expect for our baby with a T10 lesion. She says that since the lesion is so high, we are definitely looking at a high level of paralysis. Like from the belly button down. Then she says the words I am most afraid of. Never going to walk and wheelchair. My heart breaks. She continues to talk but all I can think about is how my baby will never play Ring-Around-the-Rosie with Kaleya and Reyden. They'll never feel the grass between their toes. Never twirl around to show off her pretty dress or run for the end zone. They'll never run and tackle Daddy to wrestle on the floor. It is so hard to hear that your baby will never take their first steps! She says just because we saw baby kick their legs in the womb does not mean that baby will have function of them after birth. She talks about the need for a catheter because of lack of bladder control. We also learn that our baby has kyphosis. Kyphosis is like scoliosis but instead of an "s" curve it curves out. The angle is so severe it disqualifies us for fetal surgery. :-( Caryn apologizes for the news and leaves  us until the meeting.

Once she is gone I let go of my brave facade and cry. I cry for my baby and the difficult future ahead. And I cry for myself. Joshua pulls me into his arms and holds me. It's very hard news to absorb. Both of us are completely shocked. Again this is not what we were expecting to hear! Every time someone talks to us the news gets worse! After a little while I feel a little better and start to accept the news. We decide that we CAN do this. It doesn't matter the outcome we love this baby and will do all it takes to give them the best life.
We meet with the doctors and each one tells us what they do. The first doctor goes over our ultrasound. He confirms the size of the ventricles and that our baby has a Chiari III malformation. The next doctor shows us the images from our MRI. It was really neat. It ALMOST made it feel worth the pain lol but the doctor shows us the open lesion and we can also really see the kyphosis. They tells us it disqualifies us for fetal surgery. Our baby's spine curves at a 65 degree angle. The don't do fetal surgery on babies with more than a 30 degree curve and normal babies have a curve that is in the teens. So another thing on our baby that is pretty severe. The neonatologist talks about what we can expect our baby to go through after birth. Babies with Spina Bifida have to be handled more delicately than normal babies. Then the neurologists talks about the multiple surgeries that will happen after baby is born.

They make sure to tell us they can't predict the future. All they can tell us is the information based off of similar patients. Our baby could defy the odds and walk. While the odds seem against us there is always that small sliver of hope.

Test Day at Cinci

We had to be at Cincinnati Children's at 7:30 am Thursday to register for the day. So we decided to leave Wednesday night after Joshua got off work at 11 pm. That way we wouldn't have to worry about sleeping through the alarm or traffic, especially since the hospital is two hours away from our house. We didn't actually end up leaving until 12:30 am. We had to make a couple stops on the way so we didn't arrive at the hospital until 3:15 am. Since it was so late, we decided to "nap" in our car for a few hours. It really wasn't as bad as it sounds! It definitely was hard to get up when the alarm went off at 7 am!! But we got up and went to sign in for our first appointment in Radiology.

8 am- MRI
We get taken back to a room where will fill out more paperwork. Joshua cannot come back with me since he works in maintenance and he is always around metal shavings. The MRI is an electromagnet, so there cannot be any metal in there.  I was given a gown to change into and picked out a movie to watch. The technician tells us it will take about an hour and a half!! In the room there is a machine kind of shaped like a tanning bed except the bed slides in and out of it. I have to lay on my side and be strapped in to a foam "thing" (I don't know how to explain it). She called it an antenna. Okay so she gives me my headphones and 3D looking goggles to watch the movie. Then she tells me not to move, not even to straighten my legs! I am nervous. It is so loud! It's blowing air and even though I can't see, I can feel how close it is. I'm not claustrophobic but I was definitely feeling anxious. She starts it up and OH MY WORD!! Here's my experience:

BEEP BEEP BEEP DING DONG DING 

BOOP BOOP BOOP BI-DO BI-DO 

Basically all the annoying sounds you can think of at the highest noise level possible!! Baby was not happy! They kicked and wiggled and moved all over the place. By the end of it I was in so much pain I was close to tears. It is really hard for a pregnant woman to lay on one side and not move! My hips come out of socket. When she was finally finished it took me a while to stand up. Seriously it was so uncomfortable! When I went to put my clothes back on I had red lines all down my right side.

10 am- Ultrasound
I was led to a room for our ultrasound. The nurse left and went to get Joshua who was still waiting in Radiology. The bed in the ultrasound room was amazing! Ahhhh! The room was dark and quiet and we got to see our baby. Bliss. Baby makes all tests difficult lol the technicians had to work so hard to get all the measurements they needed! But they were laughing and talking about baby's little fingers and toes and how precious they are. We also saw our baby kick!! For SB parents that is so exciting! We left there pretty happy.

11:30 pm- We go to get lunch from the cafeteria. It is huge! And there were so many choices. Joshua knew right away what he wanted (Chicken strips and French fries) and he had to follow me around until I finally made a decision ;-) It was a good lunch!

12 pm- We were supposed to have a meeting but the nurse couldn't see us until later so we waited in our nesting room up in the Fetal Care Center until it was time for our next appointment.

1 pm- Fetal Echo
We go to the Cardiology department and sign in. After a short wait we follow our cardiologist back to a room. She explains to us what she's looking for and tells us it will be a long procedure, about an hour. She tells us it's ok to sleep. And she doesn't talk so she can concentrate. It's like a high tech ultrasound. Joshua gets all snuggled in and prepares to take a nap. Lucky dog. It's almost impossible to sleep with someone pressing on your belly! After a little while, I open eyes and look at the screen.  The doctor says "Do you see your baby? Look at that. Baby has their legs up by their face and is sucking on their toes!!" It was so cute!! I was just cracking up. The doctor smiled and said "C'mon baby you're making my life miserable!" Baby is a stinker all ready. :-)

From 2 pm-4 pm we have meetings in our nesting room in the Fetal Care Center. By the end we are so tired and ready to leave to check in to our hotel room! Guest Services gets us into one of their discounted hotels for patients. We find a place to eat and then lock ourselves in our room and don't move from the bed! Lights out!!

Amniocentesis

My amniocentesis appointment was scheduled for September 25, 2014 at 10 am. An amnio procedure is a needle inserted into the abdomen and 2-3 tablespoons of amniotic fluid is withdrawn. I was very nervous. Neither of us slept very well. As we enter the room we are greeted by the friendly ladies at St. Vincent. Our Genetic Counselor, Erica, and our ultrasound tech, Kathy. Both can tell that I am nervous and are assuring me that everything will be fine. So I sit back in the chair and Kathy checks the baby on the ultrasound. Heartbeat is good, everything looks fine. Dr. Harold Bivins comes in and shakes Joshua's hand and asks if I'm ready. I try to smile and he pats my arm and says everything will be fine. Kathy uses the ultrasound so Dr. Bivins knows where Baby is the entire time. They lay the chair all the way back and tilt it so my feet are higher than my head. Then they clean my belly and start opening packages. I close my eyes, take deep breaths and try to relax. Dr. Bivins tells me that first I will feel a prick, like giving blood. Then a pinch, then a cramp. It is NOT fun. In fact, it hurt pretty bad. Okay I have given birth twice. An amnio is not the cry-out-in-pain sort but it's definitely more than a discomfort! Joshua watches the whole thing. He watches Dr. Bivins insert the needle into my belly, watches the screen to see our baby, and watches the needle fill with amniotic fluid. It is a clear, yellowish color. It is relatively quick (but felt like an eternity for me) and I had a lot of emotions running through me. I was still in pain (I mean come on, there's a hole in me now!) and I was feeling just very emotional overall. Dr. Bivins tells me I did great and their sample is perfect. They sat me up in the chair before I could ask to just lay there for a while. BIG MISTAKE!! Kathy is talking a lot, I don't remember what she was saying because I started to get really hot. I felt pressure in my neck and shoulders. I look over at Joshua and say "I am going to pass out" Kathy doesn't hear me so I interrupt her and say "Can you lean me back a little please?" She leans the chair back a teensy bit. I still feel horrible! Erica asks if I want a Sprite and I say yes please. I ask her to put the chair back more and Kathy says "Are you sure you want it back, or do you wanna sit up?" And I said "LEAN. ME. BACK!" My head gets heavy, and I am so so hot. I don't know what happens next. I passed out and had a seizure.
For me it was like this: I feel hot but cold, so cold I am shivering. I can't stop shivering and my eyes are fluttering like crazy. I try to squeeze them shut but they still flutter and I am still shaking! I can hear talking. I hear them say I had a seizure and Dr. Bivins comes in and tells them to roll me on my side. I am awake now so I reach for Joshua who is up and right by me. I grab his shirt and sob. Everyone in the room has a hand on me, rubbing me, getting me cool towels. I HATE SEIZING. It is the worst!! Poor Joshua. I can't imagine how scary it is to see me do that. He said he was worried I would bite my tongue because it was sticking out a little bit. Later Joshua said it didn't look as bad as it felt. I didn't convulse violently, just shook a little bit. And my eyes weren't fluttering but they were rolled back. And my jaw was locked with my tongue poking out. :(
I rested on the bed for a while and talked to Joshua until I felt a little better. We get a wheelchair and they take me to the car. On the way home I still felt hot and dizzy. That was a very long hour and fifteen minute drive! I was so happy to be home! I rested all day thanks to my amazing sister Glory!  

Fetal Surgery Research

In the next few days we research fetal surgery. It seems our best option. I mean if you think about it, nerves are being damaged because they are exposed to amniotic fluid. Wouldn't you want to stop that as soon as possible? It definitely seems the most logical choice to us.
 

"Thirty years ago, the first human fetal surgery was performed at the University of California, San Francisco (UCSF). Now, a randomized controlled trial has proven definitively that fetal surgery can help certain patients before birth. Babies who undergo an operation to repair the birth defect spina bifida while still in the womb develop better and experience fewer neurologic complications than babies who have corrective surgery after birth, according to findings from a major multicenter trial led by UCSF researchers. The study is the first to systematically evaluate the best treatment for myelomeningocele, the most serious form of spina bifida, in which the bones of the spine do not fully form. The eight-year trial, which was stopped early because results were so positive, shows that prenatal surgery greatly reduces the need to divert fluid away from the brain; improves mental development and motor function; and increases the likelihood that a child will one day walk unassisted. This is the first time a randomized clinical trial has clearly demonstrated that surgery before birth can improve the outcome for patients."

But there are many tests to do and we have to meet criteria to "qualify" for the surgery. Since I am going on 21 weeks we need to get this going ASAP. The time frame window closes at 26 weeks! So we decided we want to go to Cincinnati Children's Hospital. The Fetal Center is one of only three fetal surgery centers in the United States with the expertise to perform the full range of fetal surgical interventions, including open fetal surgery. They have performed more than 1,459 fetal surgical procedures. It is also the closest to our house and will be easier for people to visit. You can see it by going to the Fetal Care Center at www.cincinnatichildrens.org. After deciding, we called our genetic counselor and had her send over all my information to get the process started. We also scheduled my amniocentesis. I am not gonna lie I am pretty terrified of a needle being stuck into my belly!

Diagnosis

September 23, 2014

We arrive at St. Vincent and check in at the Center for Prenatal Diagnosis office. We're not really that nervous. After all, the research we've looked at showed in most cases parents with babies who had hydrocephalus said that their OB said everything was fine and baby would grow into it. That is what we were expecting. We were not expecting to hear a diagnosis.

We go into the ultrasound room and get all set up and see our precious little baby on the screen again. We see the little mouth with the same big upper lip as our other two kids. And tiny little fingers and toes. The ultrasound tech pays a lot of attention to the arms and legs and feet. Multiple measurements on those areas. We see the baby's head and for the first time really see the shape. It's not round like a 'normal' baby. It's lemon shaped. This is concerning.

The ultrasound tech measures the ventricles and other last minute things before finishing up and calling in our doctor. His name is Dr. Harold Bivins. He looks over the images and asks us if we knew why we were referred to him. I told him that we knew the ventricles in our baby's brain were measuring large and were sent here to see why. Then he said two words that changed our life forever. Our baby has SPINA BIFIDA.

 

 Spina Bifida is an opening in the spine. It happens in the first 6 weeks of pregnancy when the cells are still forming. Dr. Bivins turns and talks to our genetic counselor, Erica. We follow Erica to her office to talk about options. First, she asks us how we are. It's a lot to take in! Then she asks us if we want to terminate the pregnancy. I am crying and cannot really speak but Joshua and I both shake our heads and he says "NO." She says that she has to ask, 50% of babies diagnosed with Spina Bifida are aborted. "Are we sure that we want to keep this baby?" Again we say we do not want to abort our baby. This was a planned pregnancy. We wanted this baby. Who are we to say this baby is not good enough? God makes no mistakes.

 

Erica talks to us for a long time about what the future holds for us and our baby and about what our options are. Surgery is inevitable. The nerves in the baby's spine are exposed to amniotic fluid and are being damaged. This causes paralysis and any number of other issues. So we can do Fetal Surgery, where they do the surgery now while I am between 23-26 weeks pregnant. There are a number of risks and criteria to meet to be qualified for fetal surgery. The other option is to go to term and the baby will have surgery after they're born. Most likely needing a shunt to drain the fluid in the brain and definitely needing assistance to walk, if they can at all. The damage to the nerves is not reversible. We are interested in fetal surgery and ask for more information. They need blood work today and eventually an amniocentesis. We leave the office numb and in shock. How are we going to tell our family? How are we going to deal? What do we do? So many questions. All we know is that everything happens for a reason and God has everything under control. We just have to take this one day at a time.



The Burke Family

My name is Hope Burke. My husband Joshua and I have been married since 2010. I am a stay at home mom to two beautiful kids. Our daughter Kaleya was born January 24, 2010 and she is so amazing. She has always been a good little girl with excellent manners and a caring heart. She became big sister to our son Reyden on July 31, 2012.  Reyden is a spunky redhead and full on boy! He is quite the handful and is always getting in to something! But his sweet little smile always wins us back over!

After deciding we were ready for another baby we started trying. We found out we were expecting our third child on May 30, 2014! We visited the our local pregnancy care center and after an ultrasound were told our baby was due February 8, 2015. We were very excited!

Our life was pretty simple. Our life was normal. And all of that changed on September 19, 2014. We went to our normal doctors office for our 20 week ultrasound. Kaleya was so excited to see the baby. I told her about the "magic wand" that they use to see inside my belly. The ultrasound tech is very nice. She lets the kids feel the jelly that she put on my stomach and they really liked that. She is talking and taking measurements and everything is fine. After a while she starts asking questions. About my LMP and what my due date was. I told her if you go off LMP my due date is January 25 but at our 10 week ultrasound they told us February 8. She is busy with her measurements. And you know the thought never occurred to me "something is wrong." Not even when she didn't take the time to show us our baby's face. Still not when she didn't print any pictures for us. She hustled out the door saying she had to talk to Dr. Cline. She comes back and says Dr. Cline wants to talk to us. So we pick up our stuff and move to an exam room and wait. We are a little irritated because Joshua has to work today and they were already behind schedule. Dr. Cline comes in and asks us how we are, talks to the kids and tries to get Reyden to give her a hug. She then looks at us and tells us that the ventricles in our baby's brain are measuring too large. Ventricles hold fluid in the brain. That's normal. Our baby has TOO MUCH fluid. She doesn't know what caused this. She refers us to a High Risk OB at St. Vincent. Their technology is better and they can tell us more about our baby. She said most of the time it's nothing, they say "Oh this will be fine, Baby will grow into it" but -worst case scenario- it could mean Down Syndrome, Mental Delay, or other health issues. I can not explain to you exactly how it feels to hear that the baby that you thought was perfect, isn't. That something is wrong. It's absolutely terrifying. This was Friday. Our appointment was Tuesday. That was the longest weekend of worrying I had ever experienced.