Tuesday, June 5, 2012

The Hardest Day of Our Lives

A flood of emotion is pouring over me as I sit here to write this. Let me start from the beginning(well the night before surgery.)

Sunday Afternoon/Evening:
 After the boys woke up from their naps  my parents and Matt's parents came over to our house to load up the cars and leave for Chicago. That day was so sad in itself. My sister and brother in law came over to say goodbye to us(she is due to have her first baby ANY day so she was unable to be here) and of couse we shed lots of tears when they left. I know how badly she wanted to be here for us and so did he and we were hoping that we wouldn't miss being there for them on their special day either(so far so good). As we headed to Chicago it seemed like a black cloud was hanging over me, and I felt as thought I weighed a thousand pounds. We got to our hotel that night a little after 7 and after settling in we had to get the boys to bed so they could have a good rest for the day ahead. Well Lane wouldn't sleep in the pack in play(he says that is baby Luke's bed because that is currently in our room for him) so for the first time he slept in bed with Matt and I slept in bed with Luke (there was no way the 4 of us could fit in a double bed as much as I would have liked that). Luke slept fantastic. I however did not. I slept from approximatly 1230-2am and that was enough for me. The worrying started in so I just began to pray, and pray, and pray and pray some more. At about 2:45 I got dressed and ready for the day and got the breastmilk warmed up for Luke. I was trying to stuff him with a whopping 6 oz knowing it would be the last time he ate(he ate 5). I got him dressed and ready to go without him even waking up and fed him...he slept until we left at 530am. Luckily my parents had an adjoing room with us so we were able to just prop open the door and leave Lane there with them.

We met Matt's parents in the lobby at 530 and as I waited for him to pull the van up I just stood by the doors and held him and cried. I had stewed and stewed and stewed about this day and it was finally here. I just could barely contain myself. The drive to the hospital was even worse. It was silent. When we got here we went to the waiting room for Pre -Op surgery and they called us backa bout 630. Luke was still sleeping and slept until about 7:15 until we had to wake him to put his gown on. I am SO incredibly greatful he slept because I was worried that as soon as he woke up he'd be happy for a little bit but then he'd be starving. He did really well and was a happy boy smiling at every nurse and doctor we saw, and trust me we saw alot of them. It was almost like a parade. They just kept coming in one after another. All so wonderful and loving. I am sure they were even more compassionate because my husband and I were crying pretty much that entire time. Every person that we spoke to reassured us it would be ok but we were so over whelmed. Luke on the other hand was great, hungry but the binky helped and he just let us keep passing him back and forth between the two of us holding and kissing him over and over and over. His little gown was so cute and he had white pajama pants and thick hospital like socks. Once everything was ready about 8:00 am the anestesiolgist came to get us, and I thought I was going to get sick. I felt all the blood rush out of my face. She let us walk with her to the big doors that said OPERATING ROOM above them and they made us stay behind a red line...the doors were open and there were TONS of people in baby blue scrubs waiting for him...it is haunting and sickening to even re think this so detailed. The walk to the line was absolutly awful. Matt held him and just bawled and I did right along with him, I then got to hold him and cry and in the midst of all that he fell back to sleep. He was so precious! As soon as we handed him to her he started crying and seemed startled...it was awful. We just stood in that hallway and SOBBED. Hearing those doors click shut sent goosebumps down my spine.

THANKFULLY Matts parents were in the waiting room along with my sister in law Danielle and our Pastor Paul and his wife Lynne. Then the waiting began. Luckily Lane and my parents showed up about 45 minutes later from the hotel and that helped alot. The first 45 minutes were soooo long then when Lane came it got a little better to pass time. At 11:00 they called and said they just got started because it took so long to get the iv's in. Luckily they gassed him so he didn't feel all of it but there is approximatly 5-10 needle holes on each hand and foot and ankle and the iv's are in his groin (one on each side). His veins are so small and he is so chubby and then on top of that they were dehydrated from not being able to drink anything so thats why it took longer. We sat in the lobby along time watching Lane run around and play, they went to the building next door for lunch while I sat in the waiting area and read a book on healing. I had to keep shaking the thoughts out of my head the entire day just knowing what was happening to my wonderful baby at that very minute. It was torture. But torture that was in my control, sometimes I did pretty good other times were not so good. It seemed like 3 years had passed by in one day. Thankfully a nurse called us about every hour and a half to update us and each time they said Luke was doing good and everything was going great and the pediatric neurosurgeon came out half way and said his part was done(the removal of the bones) and that everything was routine and pretty much boring on his end which was great to hear. At about 230 we got the call that they were closing up the incission and that the plastic surgeon would want to talk to us in the waiting room. Our family and Lane waiting in the ICU family lounge while Matt and I waited to talk to him. About 30 minutes later the pediatric plastic surgeon came out and said he was done and everything looked great and that we'd be able to see him in ICU pretty soon . PRAISE THE LORD IT WAS OVER! We waited and waited and waited in the ICU family lounge until 430 when we finally got to go see him and he looked better than I imagined he would...of course we cried out of the shock but tears of joy that he was breathing and ok. I have had the weirdest feeling inside me ever since....have you ever felt Happy, Devestated, Thankful, Scared, Confident, Worried, Nervous, Secure, Strong and Weak all at the same time? Well I do and it is weird let me tell ya. Pretty hard to describe...just taking each moment as it comes.

Monday Night:
After everyone got to see him Matt and Lane left for the Ronald Mc Donald and my parents stayed with me and Luke and Matt's dad got him and Lane settled in. That place is AMAZING. It is so nice and totally new. Matt said they are so nice and helpful and everything has stickers that says "help your self on it". Lane is sleeping in bed with Matt everynight which is an adjustment because in 2 years he has never slept in a bed...guess it is good prepartation for his big boy bed we will be moving him into soon. He slept 11 1/2 hrs his first night at the Ronald Mc Donald house! Our first night in the hospital was scary for me because of all the beeps and monitors making noises(now I have it down what each sound, color ect...means ). I got about 3 1/2- 4 hours that night of sleep. Everytime they had to be in with Luke(about every other hr doing vitals ect...) I wanted to be right next to him holding his hand. It was so sweet everytime he'd squeez my finger or let out a deep sigh....even on Morphine I know he knows I'm here.

Tuesday Morning:
Luke was so adorable and even awake and eyes open. He was looking around and everything. It melted my heart. Matt and Lane came as soon as they got up and so did my parents and Matt's dad. Only 2 people plus Matt and I could be in Lukes ICU room at a time (it promotes good resting for him). So we took turns spending time with him in the morning and then all left to go to the cafeteria for lunch while he rested. After lunch Matt and his Dad took Lane to an awesome playground they have here and a HUGE playschool area where they have sibling lifestyle specialist. They were soo good with Lane. My parents and I took him back after supper too so Matt could have time with Luke and I could have time with Lane. That place is a GOD SEND for sure! I am so glad he loves it in there and it's safe and so much to do I don't know how he'd ever get bored. (I'll take pics today:) Matt and Lane went to the Ronald McDonald house and had a nap after lunch which was good for Lane for sure ...and Matt's dad left then. (A shout out to my great father in law and mother in law who were up here with us and helpful and loving every step of the way! My father in law is so compassionate and cried just as much as we did. He said it "doubley" hurts being the Papa because he's hurting for his grandson and for Matt and I.) My parents stayed another night and I'm so glad they did.

Tuesday Night:
Sleep was a little better but Luke's eyes became swollen shut about 9:00 so that is so hard to see. He has the best blue eyes from Daddy and Brother and I so love looking into them and him seeing me in this time of pain and now that is gone...hopefully it will return soon. Still Morphine about every 3 hrs and Tylenol every 4. He is pretty comfortable and eating every 2-3 hours.

Wednesday Morning:
Today they are suppose to take his bandages off, his drain out, and remove his central IV line that is in a large vessel in his groin. They are talking about getting another IV put in today. He has over 25 sticks in the OR to get the iv's he had so I am praying they get it is ok today. Every fuss and tear puts pressure on his head (which hasn't even been that much) so having him cry and cry and cry to get this IV is not good. If he still needs Labs drawn every few hours it would make much more sense he had and IV so they could get the blood easier. I wish they could leave the cental line his that vessel in(that's how they have been giving him the pain meds and antibiotic(to prevent in infection ) and taking his blood however in regular recovery they don't do those types of IV's. So we shall see. I am just praying and praying and trusting that God is in control and will be in the hearts and minds of those nurses and doctors to make the right decision and get it the first time. His swollen eyes and face make him look so much worse even though I know it's him getting through it all but it's so hard to see. I watched it happen gradually, however Matt and My parents will probably be pretty shocked.  I will post later on how he is doing today and what happened with the removal of things today.

WE ARE BLESSED BEYOND  MESSURE by you all. I can not even begin to describe in words our gratitude for ALL you've done for us ECSPECIALLY your prayers DON'T STOP THEY ARE WORKING!
*Thank you to our AMAZING parents who we could never have gotten through the day without them here and without their comfort. Even as a parent...sometimes we still need our own parents and we are soooo greatful for the most loving parents on this earth!
*Thank you to my sister in law Danielle and my Pastor and His wife Paul and Lynne for sitting here all day with us Monday. Your pressence and prayers were certainly needed

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