Sunday, December 16, 2012

Blessed

I am sure many of you are wondering how in the world the title of my blog can be blessed. Honestly, I myself, wonder how in the world I can feel blessed right now with all I have going on. I have a semi minor problem with the fact that I am 22 weeks pregnant with no name for my son to a huge, major, terrible problem finding out my 2 year old daughter has a brain tumor. So, please allow me to explain. First of all, I feel blessed that we even FOUND the tumor as soon as we did. I can see God's hands ALL OVER the situation. The fact that the ER pedi thought we should do a CT.  The fact that we LEFT the ER and then Nick made me come back. Lastly, the fact that they reccommended an MRI, when instead they could have contributed the results to a very busy 2 year old who doesn't like to be held down and doesn't like to be away from her Mommy. I also feel the neurosurgeon is a blessing from God. I don't know where she is from, whether she moved back to Shreveport after med school or she just "happened" to be here, but I like to think that she is here specifically for us. To operate on MY child if that is the plan God has for us. She is here with one of the best neurosurgeons in the business. She did her residency at St. Jude for goodness sakes!! How better prepared can she be?! I have to say, as much as I am glad she is here, I really, really believe and pray that she will be out of a job when it comes to operating on my baby girl.  I feel blessed from all the prayers, love and overwhelming support we have received from family, friends and people who don't even know us! To know that people in Liberia and other countries are praying for us!! What a blessing! Shayleigh has made an impact on those around us, but is also making an impact on others around the world! What a testimony it will be to be COMPLETELY HEALED!! Hopefully others will hear of her and will realize God STILL DOES MIRACLES! Woudn't it be amazing if people came to Jesus because of my little 2 year old girl?!?! I also feel blessed that apparently many have been praying for peace for Nick and I. I have NEVER been so calm in my ENTIRE LIFE!! I am a VERY anxious person. I worry about EVERYTHING- significant and insignificant....EVERYTHING. Yet, I have a peace. I am a pessimistic person. I have been optimistic. I have had a few "normal" times, but for the most part I have been super calm. Just handling it. I can ONLY attribute it to the prayers! I feel blessed that Nick and I decided to become more involved in church. I needed a few years away from church after going through a church split and drama that unfortunately my parents tried to shield me from, but I saw anyway. Nick and I now have such a wonderful church family. We know them and they know us and we can all love on one another. I am so grateful for that! I also feel blessed that we started studying James in Sunday School. James, a book that Nick was one to suggest. I keep remembering the verse we learned at the beginning of our study "Consider it pure joy, when you face trials of many kinds, for you know that the testing of your faith develops perserverance. Perserverance must finish it's work so that you may be mature and complete lacking nothing. (James 1:2-4)."  I have quoted that verse at least a million times since last Tuesday. I also feel blessed because I am learning to trust. I am learning what faith really is. I am learning to give it all to God. I love my little girl. I want the best for her. It kills me that I can't fix her problem, but I know the Man who can and I am trusting and believing that he will hear our cries and heal our little girl! I was brought up in church. I have always known about God, but never before have I trusted him like I am now! I have always been real unsure about showing faith. I didn't want to have people look at me and be like "well, she says she is a Christian, but she is doing such and such." Now, I have to be the one who is strong. The one who tells others she is going to be fine. God is going to heal her! And I have to BELIEVE it!! God knows I want to take over and fix it all, I think that is human nature, but that isn't what God wants. I know that God is trying to teach us something  by allowing us to go through this awful time. I am also blessed by an amazing husband. He has been a rock! He has been sweet and uplifting. I am also blessed with my little girl. The one who many are praying for. She is such a blessing to Nick and I! She makes us laugh. Her smile lights up a room. Her sweetness is just precious. She has been such a trooper. Children are so intuitive, and she knows something is going on, but she is more worried about taking care of mommy and daddy. She has been giving us hugs and kisses and just been a little cuddle bug. I am also blessed with an amazing family. My mom was able to come up and spend a few days with us after we came home. God bless her. She is the one who reminded us that we need to be praying for a miracle because God can do it!! I could go on and on about the other blessings, but honestly I am worn out from a busy day. We have NOT stopped!! I have been keeping up with my blog as a therapeutic release for me, and I was laying in bed about to take a nap when I felt like I needed to get out of bed and type up this blog. I hope that it helps someone. I hope that it gives comfort to someone. Please continue to pray for a miracle for our Shayleigh. Please continue to pray for us as we have a busy week next week. Please continue to pray for peace for our family. Thank you.

Until next time,

Nikki

Friday, December 14, 2012

Thanks & News

Thank you guys for all the prayers, texts, messages and comments!! Nick and I have been overwhelmed with amazing love, support and prayers! In the midst of the greatest trial of our lives, we feel so blessed. I want to start off saying that Nick and I continue to pray for a miracle. We are praying specifically that when we go in for an MRI before surgery, that they are completely unable to find ANYTHING! And everyone is completely baffled and the ONLY explanation will be God!! What an amazing testimony for our family! Shayleigh is such a blessing to us. Many of you don't know what an amazing little girl she is. Ya'll have never met her or heard her sing. Yet, many of you join with us praying for a miracle for our little angel. That is soooo amazing to me!! With that being said, please continue to pray for a miracle and complete healing!

Since many of you don't know Shayleigh I would just like to share a few little things about her so that you will feel like you really know her. She is a little red headed firecracker! We can't go anywhere without someone stopping us to talk to her. She literally stops people in their tracks! She is super friendly. She loves to sing. Her favorite songs are Amazing Grace, The old rugged cross, twinkle twinkle, jingle bells and Jesus loves me. She can sing them all! She loves to dance and Nick and I are going to have to lock her up when she gets older because she likes to shake it. She is super smart and has been talking in sentences since about 16 months. She is very intuitive. After we found out the news, I started crying and she said "Take a deep breath Mommy. It is going to be ok, Mommy."  And then she started singing Jesus Loves Me. She is super sweet and so very smart. She loves to read! She is such a mommy & she likes to mommy everyone. She is also bossy (she gets that from her daddy-haha). She loves babies and she will stop whatever she is doing to kiss on them. She is very busy and hardly ever stops. She is always moving. She loves to run. She also likes to play outside, swing and take wagon rides. I could go on and on,but I will quit now. HAHA. She probably sounds like every other 2 year old to those of yall with kids, but to us..she is soooooo super duper special!! She has been such a blessing to our family!!

Shayleigh has no idea what is going on. I am sure she knows something is going on because she is sooo super smart, but I Nick and I decided to keep everything as normal as possible. Her life could potentially change overnight, but we are keeping it as normal as possible up until that point. We do not plan on altering any of our plans. The only changes we are making is that we are having Christmas this Monday. This doesn't mean we don't believe that a miracle will happen, we just really wanna have something to celebrate after the news from this past week. She told us the other day "I know Santa Clause loves little boys and girls, but I just don't love Santa Claus." Maybe after she gets her gifts she will feel different. lol.

Now, lets get down to the nitty gritty. If it is needed, we have scheduled surgery for next Friday December 21 at LSU. We were offered 4 dates. 2 before Christmas and 2 after. The neurosurgeon told us that we could wait until after Christmas, but Nick and I won't be able to enjoy Christmas anyway so we might as well go ahead and get it taken care of.  The first date was next Tuesday. Nick and I felt that was way to quick and we needed to get things in order. The other dates we were given were all at LSU. We felt that LSU would be a great place for her because we know they see this more often. Plus, Nick's cousin works at LSU and she will make sure that everything is taken care of. She has already done a ton of research for us and helped us out tremendously. We will be meeting with the surgeon again on Wednesday. We are bringing our parents & Nick's cousin (who has been super amazing through this) will be coming as well. I have been in touch with a child life specialist at LSU and I am awaiting a call back from her to set up a meeting. The child life specialist will take her around the hospital and show her around and I don't really know what else they will do. Basically, whether or not we have the surgery it won't hurt her to be brought around a hospital.

I believe in a miracle. I really do, but I also believe that if a miracle isn't in God's plan we need to be prepared. I don't know if that is the correct way to go about it, but it really helps keep me calm. I am a planner and I like to have things in order.

Many of you might be wondering how I am doing. And even if you are not, I am about to tell you. lol. (as if this blog isn't long enough) I am doing suprisingly well. I honestly spend so much time NOT thinking about it so I don't break down in front of her that I feel like I am a robot. I have been suprisingly calm. That alone scares me because I am a very anxious person. I haven't been completely optimistic, but I am not as pessimistic as I normally am. It is so weird. The only thing I can attribute this too is all the prayers!! Again, I can't thank you guys enough for that!!  I know these posts are super long, but I want to keep people updated. Plus, it has been therapuetic for me to put my feelings into words.

Until next time,

Nikki

Picking out a pumpkin at the pumpkin patch

Nick, Shayleigh and me

The cutest little pumpkin ever!!


The LA state fair


Thursday, December 13, 2012

Terrible, no good, very bad news

This is a post I NEVER, EVER thought I would be writing. Yet, here I sit struggling to put everything into words.  As many of you know, Nick and I received devastating news earlier this week about our sweet baby girl Shayleigh. I plan to use this blog to keep people updated on everything that is going on. I am going to go ahead and start at the beginning. Late Monday afternoon Shayleigh was sitting in her booster chair at the kitchen table playing with her new favorite toy- playdoh.  I was right by her, but had my back turned unloading the dishwasher. The next thing I know I hear a thump and I jump around and she was laying on the floor. I ran over and picked her up. She was stunned. She cried, but she never shed a tear. After that she wanted me to carry her and she didn't want to walk. Then she wanted to snuggle and kept saying "Mommy I want to go night night. Mommy I want to rest." That is not something she normally does.  She likes to snuggle, but she NEVER wants to rest in the middle of the day. When Nick got home about 30 minutes to 1 hour later I told him. I made him look at her pupils because I thought they didn't look right (and I wanted to make sure I wasn't paranoid). He didn't think they looked right either. So, we loaded up and headed to the pediatric ER. I work at the same hospital in the adult ER. Thank goodness or we might still be waiting. I actually became the person I NEVER wanted to become. I wouldn't touch the note pad or pen to sign in and I walked straight to the back and completely bypassed triage. (I HATE when people do that). But, the Peds ER was AMAZING!! I can't say enough good things about them!! Anyway, the Dr came in and said we could do a CT scan. He never said anything about her pupils, but I just kept telling him she wasn't acting right. Shayleigh was acting really clingy and quiet (which is totally abnormal for her). I really didn't want a CT and eventually decided not to do it because Shayleigh perked up while we were waiting for the CT tech. Also, the CT tech that did CTs on kids wasn't coming in until 9 and we didn't want to wait for 1 1/2 hours for a test while our child was running around the room & acting completely normal. Literally running around the room. And beating up her daddy with a ballon one of the staff had given her from a party earlier that day. So, the dr came back in and told us to come back if she started vomiting or acting really funny. We loaded up in the car and drove to chick-fil-a for dinner. We sat down and Shayleigh proceeded to projectile vomit ALL OVER ME, her daddys pants and shoes and the booth. Nick said "We are going back to the Emergency room."  I was still unsure about going back, but Nick was adamant so we went back.  The Dr came in and told us "lets go ahead and get a CT scan." I still didn't want to, but I didn't feel like I had much of a choice since Nick wanted one. Since I am pregnant, I had to wait in the hallway while they did the CT. Nick went in the room with her and did an AMAZING job!! Unfortunately, it is really hard to get a CT on a really busy 2 year old. The doctor came in and told us that they saw something on it, but they weren't sure if it was due to her movement or if there was something wrong. So, he suggested either another CT or admission to the pedi floor for an MRI that next morning. Nick and I decided on the CT. The second CT didn't go any better so we were admitted for an MRI. She had her MRI that morning at about 0800. She had to be sedated and we were sent back to the room to wait. We were called down to recovery after the procedure. We waited forever for the results. The nurse told me the radiologist had a question and had contacted a pediatric specialist. Then she got the results and said we would wait on the pediatrician who was headed over to talk to us. The pediatrician who came in wasn't my regular pediatrician, but she was amazing. She told us that they found a mass on her brain & that they thought it was an astrocytoma. She said she had contacted a neurosurgeon and she would be coming to talk to us. She gave us worse case scenario, which I really appreciate. I don't want it sugar coated. I want the toughest stuff first. The neurosurgeon came about 30-40 minutes later and showed us the CT results. We saw the tumor. It was pretty obvious (once she pointed landmarks out of course- lol). Shayleigh has a tumor, they believe it is an astrocytoma, the size of a ping pong ball on her cerebellum. This is a very common pediatric brain tumor. The neurosurgeon told us she thinks it is separated enough from the brain stem that she can go in and get it all without having to mess with her brain stem. She explained the surgery to us and patiently answered all of our questions. Unfortunately, she wasn't able to tell us for sure that the tumor is an astrocytoma or if it is benign or malignant. She won't be able to confirm any of that until surgery. She will send off a piece of whatever she gets to the lab at the facility we choose and to St.Judes for further testing which will take approximately 2-3 days. She told us that if she gets in surgery and the tumor is too big or too advanced or will cause more damage than she originally thought she will only take out what she can with minimal amount of damage and close her up and then we will determine what to do from there. Nick and I left the meeting feeling overwhelmed, but very pleased with the neurosurgeon and the explanation she had given us. We feel like EVERYTHING from finding the tumor to the neurosurgeon is an amazing act of God! I am still shocked that the Dr even CONSIDERED ordering a CT on a child who didn't even have a very big fall. It is a blessing this was found out AT ALL this early! I will continue to update, but please continue to pray for us as we begin to make decisions.