Monday, May 21, 2012


Last week I got to speak to the neurosurgeon on the phone. I felt some what honored to be speaking to him directly and on his personal cell phone and at 10:00 at night. He went over a bunch of my questions we had about the surgery and helped us get this into perspective a little bit. So before you continue reading this post I need to warn you that once u read it you may feel slightly haunted knowing what Luke will have to endure during this surgery (I know I sure am). The surgery will be approximately 6-7 hours. What they will have to do is make an incission behind his hairline from one ear across the top of his head to the other ear. Then they will peal his skin back and remove all the bones from his forehead and cut apart the suture that is prematurely closed. They will also remove his eyebrow bone and the bones all above his eye socket. Once everything is taken out by the neurosurgeon the plastic surgeon will step in and put all the bones in their correct place spreading them out to the space that they should be and he will secure All those bones with pins an screws and wires. Then he will have his blood transfusion (which I was able to donate since Luke and I have the same blood type) and then he will sew up his incision using stiches. This is so disturbing to type and even think of the fact that this is actuallly going to happen. It makes me sick to even think about it.... So I often try not too. I usually do ok except when I am alone. The other day I was in the shower by myself an it was quiet and I couldnt hear the kids and everything just started flooding me all at once. I quickly turned off the water and had to get out of there because I  almost dropped to my knees at the thought of it. (and I am sure that day I will)Later on that day I took the towel off my head and realized I hadn't even rinsed my hair out. It isn't easy to be alone sometimes at the thought of all of this. Anyways the surgeon also said the pin and screws Are dissolvable and the stiches should be also. He said that the worst part is that when we see Luke it won't even look like our baby. He will be bandaged and his eyes will be so swollen. They will even be swollen shut for a few days. We can hold him right away and they usually want to be held. The back of his head will be ok but the top and the front will be very tender. I can try to nurse him right away or give him some of the milk I have froze for him but he said there is a chance he wont eat. Most babies don't want to eat for a few days but some will breast feed right away so we shall see. I can stay in ICU with him... We will have our own room with a fridge in it for me to bring all his stored milk. Luke will be in ICU for a couple days and then he should be able to go to regular recovery. Then we will stay there unil he is eating normal and can open his eyes well. Some babies do well by the 5th or 6th day and some babies take longer. I am believing Luke will be the fastest healer they've ever seen (by the grace of God of course ) The surgeon also informed me that he will be on morphine for a day or two then tylenol with codeine and then regular Tylenol as needed. I asked him how they will tell if he needs more or less pain medicine and for how long and he said that is where the mom and dad come in. Of course they have a pretty good idea of what he will need but they trust us parents & want us to tell them how he is doing since mom& dad know best. He will be very groggy from the anistetic & won't seem or look like himself for a while (this makes me so sad) Once the swelling goes down he won't look exactly like himself either. The hard ridge on his forehead will be gone and his eyes and everything will be more spread out. I told the surgeon this was hard for me to phathom because I think he looks perfect but he reminded me that he will be a new version of perfect and his brain will thank us that it's not squished and his eyes will have less Likly of a chance to have vision problems later. With that being said I keep trying to remind myself that he has to have this and it's for his own good.... But that DEFINATLY doesn't take away how sad I am. SAD is what I am. Worried.... Yes! Scared..... Yes!! But above all just plain down right sad!! God has been working in me... Helping me with fears, giving me peace , and holding me in His arms but the sadness is still deep in me. I realized though that it's ok to be sad. God understands that I am sad... After all he made me this way and every mother this way. Of course I am going to be sad and have this deep devastation in me... I am suppose to I'm his mommy and he is going through a major surgery. So everyday that it gets closer it seems to hurt even more(how that is possible is beyond me because I don't know much more I can take) We are on our way home from Chicago now. I had to go in to donate my blood for his transfusion and he had to have blood redrawn for his pre surgery lab work since the last blood they took clotted. It took three nurses to get it this time too. He cried his eyes out. I have never seen a baby cry that hard and I just cried along with him. After we got done his daddy even told him that he was so strong .... Even stronger than his parents. Two weeks from today is the day. I am dreading it so much. I just so badly want this all to go away. I am just soooo thankful for Luke and approximatly three weeks from today we will be heading home with our two normal completely healthy boys and I am REALLY LOOKING FORWARD TO THAT!
Here is a picture of Luke and I today after our blood work....
And here is a picture of our happy boy even though his vein blew and it took 3 nurses to get the blood drawn! Such a strong happy boy:)


  1. Yes, that was very hard to read. A friend of mine here in STL has a nephew that had to have the exact same surgery. Today is is 4 years old and is 100% healthy and happy. You can't even tell that he had the surgery. I'm sorry that today was a sad day for you. It is clear that Luke is a very brave little boy and will do just fine! I continue to pray for your family all of the time. I love you. I can't even imagine what you are going through. Someday soon this nightmare will be over and Luke won't even know what he went through. He is a blessing and God will make sure that he is taken care of.

    1. Thank you so much Katie!! So nice to hear your encouraging words about your friend's nephew. SO glad to hear he is happy and healthy...did she say if she had any tricks to keeping herself sane through it all? (Hee hee just kidding I'm still considered sane) Thank you for commenting and being a good friend and for your amazing devotion to pray for us. The 4 of us love you tons!

  2. Hello again...

    I commented on your first post as I didnt even see these. This was very hard to read as I remember when my daughters dr told us exactly what they had to do during her surgery... it tore me to pieces. I would find myself crying all the time when I was away from her. Pure heartbreak. Please know I will definatly be thinking of your family and Luke on June 4th probably all day. I almost wish my daughters appointments where that week instead of next week for I would definately try and find you and just give you a hug. lol. I found great comfort in talking to others up there that knew exactly how our hearts felt. God bless you. you are in my thouhts and prayers