Thursday, May 10, 2012

Introduction to Deckerville and the current situation...


Well here I very first Blog post. Wow where to begin? I so love reading other peoples blogs but as I sit here to begin my own I can't really think of any clever punchlines or opening statements?!? Guess it's a good thing this isn't getting a grade:) I have been reading a few of my friends blogs  and have really enjoyed keeping up with them and have been wanting to start my own for a while now. Recently my husband and I have been put into a situation that is by far the hardest thing either of us have had to go through(and we haven't even got to the half way mark) and that has lead me to want to blog even more. Before I begin to share that....let me catch you up to speed. Matt and I have been married for 3 years now and he is the most amazing person in the entire world! I am always humbled by the calmness and paitence that he brings into my life of "busyness". We had our first son "Lane" April 16, 2010. Here we are on his 2nd birthday! Isn't he so adorable!! Our lives changed forever the day he was born in the best way! We are sooo blessed to have him! He is the funniest, smartest, greatest little 2 year old on the planet!
On Valentiens day this year we were blessed with our 2nd son "Luke". We were again lovestruck and are now doubly blessed!!! He is such a GREAT baby and almost 3 months old now!!
Here he is on the day he was dedicated to the Lord!
We are SO thankful for our children and SO greatful for the happiness they bring to our lives!
 I feel absoluly complete being a wife to this wonderful man...
                                            and a mommy to these beautiful boys....

I could not be happier....
I am so in love,
and that is why it hurts so bad when something goes wrong....

So here begins our journey...once Luke was born he of course seemed absolutly perfect to us! We had a great two days in the hospital and Lane was so happy and in love with his new little brother. The day we were getting to come home our pediatric nurse in the hospital (who we had with Lane also and absolutly love) came into our room and asked the discharge nurse if she could have a few minutes alone with Matt and I. The minute that nurse left the room tears entered her eyes. She told us that Luke's head was not normal and that she had asked our pediatrician to do an xray and he refused thinking everything was ok. She informed us that about 30 years ago she had a baby boy born in that hospital who had a bone on his forehead that was hard, and not soft and pliable as it should be. She suggested to his doctor to get an xray and he also refused thinking it was fine. The nurse however did not agree and she went above that doctor and found some one to give a second opinoin and do some imaging on that baby. Come to find of his facial sutures had closed prematurely and he was going to need major surgery to fix it in order for his brain to grow properly in his head . With this being said...she told us that she thought Luke had the same condition....and well, unfortunatly she was right.

We left the hospital scared as could be but spent that entire weekend praying and asking God to give our pediatrician the wisdom to know if Luke needed some imaging done. We left the hospital on a Thursday and had Luke's check up on Monday. As we entered into the room we had high hopes that it was nothing....within seconds of looking at Luke our doctor placed his hands on his head and said "You are going to have to go to Iowa City." Shock immediatly came over us and we were both in tears. As most of you know Iowa City holds one of the most prestigious hospitals in the country...and as great as that is, hearing you are going there with your new PRECIOUS baby was the most awful thing we had ever heard. Our pediatrician told us that he did indeed think that Luke's skull had closed and that he would need to get a ct scan done to find out if he would need surgery. That was one of the hardest days ever...I think the initial finding out is something I will NEVER forget or beable to erase from my memory. We left there so sad, and scared. On the way home we agreed not to get on the internet and start "googling" because we know that would only make things worse. We decided that we were going to go home and call that nurse from the hospital and ask her to give us as much information as she could so we didn't have to frighten ourselves anymore by reading horror stories online. When we pulled into our garage from the appointment I was trying to gear myself up to get out of our van and go inside and tell my mom(who was watching Lane at our house for us) without crying and scaring my toddler. As I got out of the van and I looked out of my open garage door and my Dad just so happened to be walking up the driveway...and I just lost it. Something about being a daddy's girl and having him there in that moment just about brought me to my soon as I saw him I dropped my head and before I even made my first gasp of tears he said "What's wrong baby?" and in a second he caught me in his arms as I just exploded into tears. It took me a little bit to even say the words..."We have to go to Iowa City" my mom opened the door holding our 1 year old she instantly was scared and panicked too seeing us all upset as we walked in from our "well baby check up" in complete tears.
That evening was pretty awful...we called our immediate family and informed them of what we had found out and it was so hard saying it over the phone. Matt called his dad and as he tried to tell him his voice cracked and he broke down into tears, and luckily my amazing father in law just hung up the phone and came right over and prayed with us and for us. When our nurse got off of work she came over with information she had printed off of the internet that was informative about "Craniosynotosis" and a website that she called "safe" where you could see children that had this before surgery and then see them after surgery. (We still haven't ever had the strength to look at all those pictures.) We did however find comfort in knowing a little bit about it. From what we gathered it sounded like Luke's "metopic" facial suture had closed in my womb.(The closing of the metopic facial suture is the rarest form of this.) We did read that it is fixible...PRAISE THE LORD....but he would need a surgery in doing so. The next day I woke up feeling as those I had just had a nightmare....I literally had to sit and think a second if this was all true. I had to call my insurrance company and tell them that Luke was born and to add him to our plan and that he was going to need "special attention". I cried just saying that and again just now as I typed it. Such a hard thing to speak out of your mouth. I struggled alot(and still am not perfect) with wondering why this happened my baby. The baby I prayed for EVERY SINGLE DAY as I carried him in my womb...that he would be "healthy whole and strong in everyway"....but I have managed to get a grip on that and now be thankful it is my baby.(Sounds a little crazy but I will explain more in a little bit). Anyways after calling my insurrance and family and being prepared to go to Iowa City...we found out our insurrance was not accepted out there and we were going to have to find some where else. This set us into another whirlwind of emotions. Knowing how excellent Iowa City is we were scared at the thought of going anywhere else. Our doctors office said it would be a little bit and they would do some research in Chicago, Peoria, and Rockford and try to find us somewhere to go. Well when they said it would "be a little bit" that didn't sit well with my husband. He instantly got on the computer and starting researching himself and found a "cranio facial clinic" that specialized in this. He found an amazing doctor who is not only a Pediatric Neurosurgeon but he is also a professor and teaches students how to do what he will do to our son. We felt great about his Bio and the information we found about the University of Chicago Medicine and the Comer Children's Hospital and asked our doctor to refer us there...and they did that day. The next day we recieved a call from the neurosurgeon's nurse setting us up with an appoinment on March 5th to go in to the University of Chicago Medicine and meet with the pediatric neurosurgeon, pediatric plastic surgeon, and the pediatrician and geneticist to discuss Luke's condition. It was a LONG 3 weeks until we got to go and meet with them all and learn what we were dealing with. It took alot of prayers on our behalf and on the behalf of those that love help us get through the fear of unknowing what to expect. I robbed myself of some of that precious time with my newborn crying everytime I looked at him rather than smiling and staring in awe of him. It took a while but I finally (with God's grace) I recieved the peace that passes understanding in my heart that God himself will take care of Luke and this entire sitution. I am not going to first I was mad....I prayed everyday for my unborn child believing he was fearfully and wonderfully made! That he was perfect in everyway...and after all of that he isn't perfect. I took a little bit of time to have a pitty party but was QUICKLY humbled by the fact that Luke is in NO pain what so ever, that even tho he will need surgery that he IS fine and will continue to be FINE after it is all said and done. Some children are born with issues and condtions that effect them their whole lives....but not my child! My child has a condition that WILL be fixed and he will live a LONG, HEALTHY, NORMAL LIFE!! Am I still sad? I still scared? .....ABSOLUTLY! But the flesh I walk in is sad and scared...but my spirit and soul is at peace. is much easier to walk in the flesh of this world and not in is harder to be a Christian and walk in faith than it is to not be....but I wouldn't have it any other way! I will continue to feed my faith and pray for my child, the doctors, nurses, and every person and thing that ever comes in contact with Luke. So better my child than someone who doesn't have a parent of faith. After I noticed in Luke's ultrasound(about a month ago) that it was fused even at 20weeks and I could see it on the ultrasound I realized that he was made this way....made this way just for me and my husband! So everyday I surrender this to God and ask him to make me strong for my children. Somedays are hard and some are easier....but everyday God is with me...even when I'm mad, scared, sad, ect...He is with me, covering me with his grace and paving a perfect path for us all to walk down as we face this trial. "NOTHING AHEAD OF YOU IS BIGGER OR STRONGER THAN THE POWER OF GOD BEHIND YOU"
On March 5th we went to Chicago (and were blessed with a perfect ride there and home with Luke) and had a great experience with our doctors. We spent an hour and a half total talking to them and learning about this. We set up a Ct scan for Monday May 7th to be done so they could see perfect imaging of Luke's prematurely closed suture. Just the other day we went again to Chicago but this time to the Childrens Hospital...and let me tell you that is a wonderful place. Every inch of that huge building is made for is so sad being in there knowing it is filled with children that have problems but more importantly it is such a happy feeling that an amazing place like that exsists and that it is filled with educated people that love kids and are there to help them.
Luke was suppose to be sedated and have a Ct Scan. We prayed like crazy that everything would go perfectly! We were in tears at the thought of him needing to be put to sleep to have it...but we had come to terms with the fact that it had to be done so they could get the absolute perfect picture of what needed to be done. Well GOD IS SO GOOD....and blessed us with more than what we could have asked for....wonderful rad techs that did everything they could to get it WITHOUT SEDATION! Thanks be to God! Luke did great! They had lights, music, toys, vibration tools, assist with keeping his still. They got the imaging they needed and then Luke had to have blood drawn to do some lab testing. The first nurse that tried to draw it couldn't get it so they called in doctor. She finally got the blood they needed but called me 2 days after and said it clotted and we will need to have it redrawn.
(Which we can do locally if need be.)
So now I think I have caught everyone up to date. We are waiting to have the surgery date finalized, and then I will have more information to update everyone with. As for now...thanks for reading, and please pray for our wonderful little boy! We surely appriciate it!!!


  1. Hello...

    I know you do not know me. I saw your story on one of my friends facebook page. My name is Kristy Smith and I just wanted to write and tell you I truely know the pain your heart is feeling now. Not for the same reasons but my daughter Kylee was diagnosed late at 4 1/2 years old with hip dysplasia which ended with bilateral hip osteotomies and a pelvic osteotomy on her right side. By the time they found this she was in alot of pain and damage was already done. She ended in a body cast and brace and was bed ridden for two months.I wanted to let you know your son is in good hands with the Dr's at university of chicago and comer's. That is where my daughter goes as well. She sees a pediatric orthopaedic and neurologist and we love them all! That surgery was 10 hours of long awaiting agony as we paced the floor. It felt like that day would never end. We expected to get through the two months and things would be fine. But to our surprise she started taking steps backwards and 6 months after surgery started tests to find that she has a slowly progressive neuromuskular disease. Since the first surgery she has had two more one of which was on her right hip again with the body cast and all and another this past December on both feet. She will possibly need another on her right hip again in the future as her muscles seem to keep fighting aginst her. I also wanted to tell you when your son has surgery you will be given the oppertunity if you havent already to stay at the ronald mcdonald house there near the hospital. Once again a wonderful wonderful place!! My parents were actually able to stay and take care of my other two children while we were there for surgeries and also to be there for my daughter. The people and the house are just so great!! We will actually be going up next week for two days of appointments and as weird as it may sound my kids love to go there. LOL. I just really wanted to express to you... you are in great hands and I know that feeling of pure heartbreak as you never want something to be wrong with your baby. God will get you through this as he has done for us and still does on a daily basis. I will be praying for Luke and for god to wrap his arms around his little body and your hearts as you go through this process and for god to guide the drs hands while he is in surgery!

    Kristy Smith

    1. Kristy-
      WOW...what an amazing comment. Where do I begin...I am flooded with emotion right now in so many ways. First of all THANK YOU SO MUCH from the bottom of my heart for taking your time to write to me (even when not knowing me!) It is so encouraging to speak to other people that have an idea of what we are going through...and you my dear have more than an idea! I am so sorry to hear about what you have been going through(before I forget do you have a blog? I'd love to follow it...and if not you should start one...what an incredible story) What you have been going through with your daughter sounds so taxing. You are so strong...thank GOD for HIS strength!I will be praying for her for sure!! I truley will because I have a new profound understanding on how much it means to me when someone says "I'll be prayin for you" and the acctually do! We are staying at the Ronald Mc Donald house which I am so thankful for ...(eccspecially in the financial department) I am so glad your stay was good...I wasn't really sure what to expect with them...I've only heard good things but it is kind of hard to imagine it all you know??! We have been so blessed by the Comer Hospital so far and I hope we fall in love with them all as much as you have. How great your kids love it!! It is a bright wonderful kid friendly place! I am so encouraged by your faith and knowing it's God who gets you through on a daily basis. Everyday is so hard just wondering , worrying, hoping, and praying our wonderful precious baby will be fine! (obviously you know the feeling ten fold) I am so thankful for God's grace!! THANK YOU THANK YOU THANK YOU for your comment. It means so much!

    2. You are more than welcome for the response. I just couldn't see not commenting because I remember how encouraged and how much better we felt when we were able to just know others knew what we were feeling. You know everyone can always say they know how you feel and its wonderful that they are thoughtful enough to try and help but I understand now until you have something like this happen you truely have no clue how heartbraking it really can be. I understand how you would feel a little unsure about what to expect from the house. We felt the same but I promise you, you will feel right at home. They have always made us feel like it was "our home" from the second we walk in the door. You will not be disappointed. In every room they have a book or journal for families to right in about thier journies that brought them there. That is always the first thing I do when we go in our room. Even though some stories are heartbraking and far worse than ours it just somehow gives me a peace and comfort to go on. I do not have a blog... I probaly should. I always tell my daughter Kylee she is my HERO so I really should have one. :). I just know your son will do great. I will continue to pray and check back for updates. :)