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 out....one 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 knees....as 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"....as 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 us....to 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 lie...at 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?....YES....am I still scared? .....ABSOLUTLY! But the flesh I walk in is sad and scared...but my spirit and soul is at peace. However....it is much easier to walk in the flesh of this world and not in faith...it 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 kids...it 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, ect....to 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!!!