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!!