We spent February 18th to March 15th, 2011 in Vanderbilt's Neonatal Intensive Care Unit, which is by far the main reason that I don't like Vanderbilt now. As sad as it is to say, we were treated terribly during our stay. We encountered way more hatful people than kind. With the exception a few doctors and nurses, most were sterile to the fact that my heart was breaking for my new born son who was blind. People who didn't care that they made me cry at their coldhearted remarks. The whole time we were there, I felt like I was missing out on the first precious days of Christian's life.They wouldn't let me hold him until he was 2 days old. They wouldn't let me put clothes on him. They wouldn't let me feed him. The nurses took care of him, and I didn't get a say. They made me go to classes during the day instead of spend time with Christian, which really made me mad. I didn't understand why they would add even more stress on me when I was already dealing with so much. When we finally got to go home, I was overjoyed, but the pain of that NICU stay has left a scar on me that I doubt will ever completely heal.
February 22nd was the day of Christian's first surgery, a little of it was reconstructive, but the main reason was to insert his g-tube. The first 4 days of Christian's life we had watched him eat with a tube down his throat, watched him scream and grab at it trying to pull it out. We were so relieved when they told us they were putting in a g-tube because we were so tired of seeing him suffer. Of course, we were terrified that he was having surgery, but in the mix of emotions and activity surrounding Christian's birth, we didn't even have time to mourn it. We were the sterile ones at this time. We just listened to the doctors, shook our heads in agreement and let them do what they needed to do, almost as if we were zombies, and I guess in a sense we were. We were still trying to greive, to sort things out in our heads, to figure out how we were going to actually take care of Christian once he got home, to see if he was going to live in the next few days.
When we did get to go home, we actually got to become sort of "normal." Christian cried a lot from the pain of the g-tube insertion, and we went to Vanderbilt literally 3 times a week for different appointments. It was stressful, but managable. I enjoyed it, but I was also mad at the fact that Christian only got to be home for two weeks before I had to go back to work from my maternity leave. Not mad at a person, because no one made me go back, just mad at the situation, and upset that I did not get those precious weeks of bonding time in the beginning of Christian's life. It was also hard returning to work and seeing all those kids, all healthy. I wasn't mad at other people for having healthy kids when I didn't, just more sad that I didn't get the opportunity to know what it was like.
May 23rd, 2011 was a day that redifined pain to me. I thought I had experienced it all. I had faced the fact that Christian was blind, I had sucked it up and went to all his appointments, I had even gotten used to the g-tube and the fact that he had undergone surgery already. I knew that my life was different forever and I had accepted it. Then, Christian had a major surgery. It was HUGE is the only way I know how to say it, but I don't think I even have to use words. If you look at the pictures below you can see everything. They say a picture is worth a thousand words. Well, this picture (the post-op one) is worth a LOT more than a thousand. There is a whole story, an entire life, behind this photo. I apologize for the graphic nature of this picture. At least, to me, it is graphic. Every time I see it I literally get sick to my stomach. Just to think of the pain that he went through still tears me to pieces inside, but to know that he will have to do it over and over is what really hurts.
There is no common thread for clefts, no absolute reason why they occur. With Christian, we had genetic testing done, and everything came back perfect, so we know almost for certain that it wasn't genetic. But as far as any other reason, we are in the dark. But really, reasons don't matter, because even in utero, there is no "cure" if a baby is found to have a cleft of any kind. The only "cure" for a cleft is plastic and cosmetic reconstructive surgery.
The moments before Christian went back for the surgery were horrible. I felt a heaviness inside of me that I can't describe. When the nurse came to take Christian from my arms to carry him back to the operating room, I thought I would faint. I absolutely did NOT want to hand him to her, but I didn't have a choice. We waited somewhere around 7 hours, getting occasional phone calls to the waiting room from the operating room. The actual surgery consisted of breaking the bone above his nose and pushing his nose back, and sewing the cleft closed on either side of his nose in an attempt to make his mouth close. The doctor also sewed up his right eyelid a little while he was there. Christian did amazingly well and the doctor was very pleased with how everything went. But walking back to recovery to see Christian was the most painful moment of my life. The picture above is what I saw. He wasn't asleep, unfortunately. He was breathing heavily and moaning. I was trying to talk to him and calm him down but the pain was just too much. I remember him trying to cry out, but his mouth was so swollen that he could barely open it to make a sound. He hurt so bad for the next 24 hours that I thought I was going to break down. That night as we got set up in the PICU and ready for the night, I was scared to death that Christian was going to die, and that I was going to be there alone, all my family an hour and a half away. I remember also, sitting in that PICU room, listening to the monitars beep exactly like I had done when Christian was in the NICU, and all I could think was "This is my life now. This is what it's going to be from now on, surgery after surgery, day after day in this hospital." I had been able to handle everything else, but I wasn't sure I could handle this one. And although Christian cried all night that first night, he didn't die. He recovered as quickly as we could hope for, thank God!
We stayed at Vanderbilt Children's for 5 days. We went home on a Saturday, Memorial Day weekend, May 28th. This time our stay at Vanderbilt wasn't as bad. The Pediactric Neonatal Intensive Care Unit was a pretty scary place. I had to fight several nurses on several occasions. About an hour after the picture above was taken, a nurse thought that she was going to put a mask on Christian's face. As I was telling her that she couldn't because he had just had the bone broken above his nose, she placed it on him. He screamed out in a horrible fit of pain and it took everything I had not to jump her and beat the crap out of her for her stupidity. I screamed "Get it off his face! He's not wearing it!" She began to say something again in argument but I guess she saw the rage on my face or heard it in my voice and decided not to. She went and got a humidity box instead to sit over his head as an alternative to the mask. There was also a nurse that literally tried to take his blood pressure about 7 or 8 times in a row, while he was screaming to the top of his lungs. She had just taken it an hour before and Christian was so tired. He had not rested since he'd the surgery because student nurses came in literally every hour during the day, and regular nurses every 3 hours through the night. Finally I told her to stop, she wasn't trying again, and not to come back to take his blood pressure until the next day. I felt kind of like a jerk after that because she was just doing what she was told as a student, but I was so stressed and exhausted that I just decided that it was for the best and let it go.
To sum it up, it hurt. I don't know what else to say. It was THE most painful thing I have ever had to do. Having to helplessly watch Christian go through so much pain was almost unbearable. I'm not even sure if this will make sense to anyone who's not been there, but I'm going to try to put it into words. Have you ever heard that someone can be in so much physical pain that they pass out or even die because their body just can't take it? Well, there were literally moments where I thought my heart would stop beating right then and there because I was in so much pain, I didn't understand how I was going to live through it.
Maybe I am blogging this to face my own fear. I am not ashamed to admit that I am completely petrified of the next time Christian has surgery. I am not afraid to say that I dread every single second that I will have to wait in that waiting room or that I'm not even sure that when we are called back to recovery, that I will be able to walk under my own strength. I do know that we face this routine several dozen more times (maybe up into the 60's) and I have no clue how I am going to handle it.
After this surgery we went home and started being "normal" again. We still had a lot of Vanderbilt appointments. I remember that the first week we didn't go to Vanderbilt at least once was in August, when Christian was about 6 months old. We had such a fun summer with Christian. We took him to the lake once or twice, we went swimming all the time. Christian LOVED swimming, and I loved seeing him in his tiny little swim trunks with the red lobsters on them. :) He got him a little float that he could sit in and he would sit in that thing and float around the pool for an hour or two at a time.
The fall was a really fun time, too. We took Christian Tirck-or-Treating and our course he dressed up as Superman. My favorite memory, though, would have to be when I carved out a pumpkin and sat him down in it to take pictures. Christian absolutely HATED it, but oh my, how I cherish those pictures. It was absolutely precious to me! Everyone who saw this picture would say "Oh how sweet! He's grinning ear to ear!" When really, he was screaming to the top of his lungs while this picture was taken! haha! But I didn't spoil anyone's pleasure by telling them different. :)
Thanksgiving and Christmas was also an exciting time! We took Christian to Opryland Hotel with some good friends and just enjoyed the day on Christmas Eve. We had lots of dinners and Christmas parties. But Christmas morning was probably the best. Christian was still a little young to completely understand what was going on, but he had fun none the less. I only let him help open one present because he liked to try to eat the paper, but he had a ton of fun playing with all his new toys. Chris and I got him a handmade wooden toy box for Christmas because we knew he would need it with all the new toys! And it came in handy! :)
The new year came and passed as quickly as I type this sentence. Christian stayed with my mom while we went out with friends on New Years Eve, and as the new year began, I began planning for the BIG birthday bash. January flew by just as fast as the new year, and my baby boy was quickly approaching toddlerhood.
I am so sad that Christian is already about to be out of the infant stages, but I am thrilled that we have made it this far already! Of course I left out SOOOOOO many other things that have happened this past year, but I wanted to highlight the ones that were most significant to me. There is just no way to incorporate everything!
I especially want to thank some people for their constant support and love throughout this last year. I would NOT have been able to make it through this without them.
My Mom and Dad, who taught me what it meant to be a parent, long before I ever realized what they were doing; and who love Christian so unconditionally that it's ridiculous. They saw past his birth defect the second they laid eyes on him, and that is not something just anyone can do.
Tracy Higgins, who has put up with my emotional roller coaster self on almost a daily basis for the last year, and has never blinked an eye at my taking off of work constantly for doctors appointments. I will never have another a boss or friend like her!
Some new friends who I met solely because of Christian, and who have encouraged me, helped me, and lifted me up in my darkest times, Pam Randolph, Lauren Johnson, Amanda Parks, Melissa Whitehair, and many more. I know that God placed all of you in my path so that I would be able to make it through those tough days and have help when I needed it.
Some old friends, who never once treated me differently after Christian was born, but just kept on loving me and let me know that Christian was just as loved. Just about my entire life changed when Christian was born, but my friends stood steadfast and that means the world to me. Especially Tabitha, Jeanette, and Shawna.
To Harvest View Church, who opened their hearts to Christian immediately the first time we ever visited there. They didn't ask what was wrong with him, or why he looked different. They wanted to know his name, and what he liked, and if they could hold him; another rare thing in our lives. The instant acceptance that we felt there was so refreshing and much needed.
To Special Kids and Dr. Chandler's office, two of the most AMAZING places in the world, who always have answers to my endless questions, and never even act like they mind that I've already called them six times today. :) Who love Christian and root for him to win, even when the odds are stacked against him. They never give up hoping and pushing him to be the best person that he can. I COULD NOT do everything for him that he needs without both of these places to help me.
And to SOOOOOO many people that I could never possibly name them all, I'm talking hundreds! So many people have showed us so much kindness this past year and have reached out to us in ways that we never would have imagined. We are so blessed to have so many amazing people surrounding us, ready to help in any way they can. So many people have offered to help babysit, offered us financial support, sent cards just to encourage us, messaged me or emailed me just to let me know that they thought Christian was wonderful, were ready to pounce to defend me or Christian at any injustice, or bought Christian gifts for no reason at all, just to name a few of the kind acts that have been bestowed upon us this past year.
I hope you all know just how much we appreciate every single one of you, even if we don't say it enough!
Now that we've made it through this year, I don't doubt so much that we will make it through the rest of them okay as well. So here's to the 1st year of Christian's life, goodbye! And to next 119 years to come, I can't wait to see what an amazing person he will grow into, and how God is going to use Christian! Bring it on!
If you have a special memory of Christian's first year of life, I would LOVE if you would share it in a comment below!