Subject: Will
Hello to all our family and friends! I've thought over the last few days about what I would write...quite frankly if I would write at all! I knew I couldn't let this day slip away without saying something. I've had so many emotions that I have felt here recently, it's kind of hard to explain, but I am going to try and give you all a little glimpse into our wonderful world and a little taste of what God has done in our life over the past year. I hope you all will consider this your Christmas card..so don't expect anything fancy come December :-) Just kidding! I hope you won't mind me sharing a little bit about Will's birth and chain of events b/c some of you I never got to share this with. Many times I had sat down to start a blog or a caringbridge site and it just never happened, I had too many thoughts and I was going in too many different directions.
September 4th, 2010...our baby Will made his arrival at 6:06pm to be exact. I had gone in the night before because the doctor's had decided to induce my labor due to my blood pressure being high; I was more than ready to get him out! I was expecting a fairly quick delivery because Madi was born in a little over 10 hours from the time my labor started. I was thinking 5-6 hours and he'll be here :-) You all know how that went! What a precious moment when Will finally came out...the doctor was literally clamping his cord and he peed right on Greg! We knew his plumbing worked just fine!! They laid him on my chest and I knew immediately that something was wrong. He had this stark look in his eyes and his little chin was so small and very recessed. He never took that initial deep breath. I handed him over and they started working on him..I knew it was bad when they took him away to the nursery. After that, it's all fuzzy b/c your mind goes in a million different directions. It's pure shock.....what were we going to tell Madi, she was in the waiting room anxiously awaiting his arrival. We had it all planned out that she would be the first to hold Will after Greg and I. Was Will OK and what were they doing to my baby? I was a wreck, but somehow Greg and I mustered up the strength to talk to Madi and the rest of our family. The neonatologist from Duke had arrived and talked to us about Will and told us they were going to transfer him....we requested the transfer to UNC b/c we felt like they could care for Will best. Our family met Will for the first time as he was being rolled out the door to UNC. He was in an incubator and looked like an angel...despite all the cords and tubes. My doctor was fantastic and arranged for me to be transferred to UNC as well. Greg and I arrived at midnight on the dot! All I can say is adrenaline. After they checked me in, we couldn't get to NICU fast enough. Our little angel was so innocent laying there hooked up to so much stuff. All I could do was cry, I wanted to hold him so bad, but he was asleep and I knew he had already been through so much...I didn't want to disturb him...I just laid my hands on him. Greg held me and we cried some more :-) I can't say enough about the staff at UNC, they were fantastic from day one....they will forever hold a special place in our hearts. They're family! Over the next 42 days, we learned more about Pierre-Robin ( what Will was diagnosed with) and the things that come along with that...like a cleft palate, airway obstruction, feeding problems, etc... We were told on more than one occasion that Will would need a tracheotomy or a surgery called Jaw distrators in order to help his airway problems. It was our choice to decide! At this point, Will was breathing on his own, but needed an 8cm nasal trumpet(aka:nasopharyngeal tube) down his nose to keep his airway open. See, without this his tongue would fall back and block his airway due to his chin being set so far back in his face. Greg and I began to ask more and more questions..did a little research and the rest is history! We were told that if we went the trach route, Will's chin should grow on it's own to a "normal" length or 90% by the time he was a year old..then they would remove the trach when he was 12-18 months of age and he should breathe just fine. I kept replaying this over and over in my head. If we went the jaw distractor route, they would break his jaw on each side and they would "re-set" the chin and he would have pins in both sides of his face that we would need to turn twice a day. Really?? Neither of these "choices" sounded like a good plan to me. Greg and I would go to the hospital everyday and we would hold Will and look at him and he had this tube in his nose and he was breathing just fine...why on earth would we need to trach him or do this horrible surgery...he seemed fine. I began to pray ( not that I hadn't been praying before this..just in a little bit different way). Lord, help us to do your will and help us to know how to help our Will. I don't think that it was a coincidence that right before Will was born, our Sunday School class was doing a book called " When God's people pray". I have prayed more this year than I think I have in my entire life. I found myself praying for the other children around Will, people that I would pass in the hallway of the hospital..people I didn't know or why I was even praying for them. I just prayed. Then I began to praise God...on the good days and the bad days...because I knew that no matter what happened, he was going to take of us. I had so many hours to sit and think and talk with God. There were many days I felt like God was rocking Will and I as I was holding him. For some reason I had this sense of peace about things. After having Madi, I felt like a semi-truck had hit me...but this time I felt fine...it was very weird...to some degree I felt like I hadn't had a baby. You know...God doesn't leave a page un-turned. Deuteronomy 31:6" Be strong and courageous. Do not be afraid for the Lord your God goes with you; he will never leave you or forsake you."
Many of you rallied around us...your prayers, visits, calls, food, money...the list goes on and on. Madi said not long ago " you know what the best part was about Will being in the hospital...." she said " all the good meals people brought us!!!" AMEN!! It was amazing! I know for a month or more, we had a meal that came every night...Sunday through Thursday! Not only did you feed our stomachs. but you feed our souls. I can't tell you how much it meant to us to be able to come home to a meal..it gave us time to be together and it gave Madi a sense of normalcy in our up-side down world. Short of writing a novel, I better start wrapping this up...so much I want to say!! As you all know, we finally got to bring Will home October 16th, 2010. I couldn't pack his stuff up fast enough...on the other hand, I was scared to death to leave our beloved nurses and our comfy and secure environment. Will is our little pioneer. He was the first baby to leave the UNC NICU with a nasal trumpet. I am so proud of this and I will forever be advocating for these "Pierre-Robin" babies. I know it's not the route for everyone, but at least it's a "choice". We learned how to take care of a feeding tube and his nasal trumpet, etc....and basically proved to the staff that we would take excellent care of him! I think they were just as scared as we were...it was "new" for all of us involved. Today, Will is doing fantastic. He still has his feeding tube and he's getting ready to have his cleft palate repaired on the 15th of this month. He no longer needs the nasal trumpet and his little chin grew on it's own just as expected. To look at him today, you would never know what all the little guy has been through.
I know this story..."Will's story" didn't happen the way WE had planned...but you know what...it's what God had planned. I thank God everyday that he has entrusted in Greg and I to be Will and Madi's parents. It's such a gift. God changed our lives for the better. He brought Greg and I closer together, he made us look for the good in everything and more importantly, he taught us to hunger for HIM. Not just to call on God in a time of need, but to talk to him on a daily basis because we wanted to...we need him on the good days and the bad days. For lack of better words, Greg and I needed some direction and through all of this, we got it. We have met more people..like the family whose child that was next to Will in the hospital...who passed away 3 days after we brought Will home. This child and his story brought me to my knees and humbled me. I will NEVER forget him or his family. All the many nurses that cared for Will...including Will's first home-health nurse..Curt. I know without a shadow of a doubt that God sent Curt to us. Greg and I have joined the NICU family advisory board and taken some training so we can hopefully be there for others in similar situations. Looking back on all of the chain of events that have happened this year....I don't know how anyone could possibly begin to explain. People have said to us, "we don't know how you did it",,,,yeah well...we don't either other than we had Jesus Christ on our side. He carried us. It melts my heart every time I see Will accomplish something new. He has come so far this year and he is our miracle. Today, he turned one! Poor Greg had to work, but Madi and Will and I got up and went to church...I couldn't think of a better present to give him. We had a little cake for him this evening and it was so much fun watching him! He had no trouble destroying the cake! Thank you for loving our family and for letting me share. I hope you all have a fabulous labor day. Happy Birthday Will...your one special little boy!! Good night to all...and to all a good night! Kyla
Ok..where was I?? After Will had his cleft palate repaired, the insurance company kept telling us that they would no longer send us a nurse and I keep telling them that no daycare was going to take my child with a feeding tube in his belly...We won the fight and that's how we got Maria! Maria started with Will in January of 2012 and tomorrow is her last day with us! It's very bittersweet! Maria is an absolute angel sent from God and she has done so much for Will and our family. Just to tell you a little bit about Maria, she is one of the hardest working ladies I know. Let's face it...taking care of a toddler day in and day out is not an easy task...then you throw in the fact that he has some special needs to attend to like tube feedings and speech therapy...it's a hard job. Maria has the sweetest disposition about her and she NEVER gets upset...she has patience beyond belief. Maria has worked with Will to help him grow into the mischievous little toddler he is today! In fact, she has worked with Will so much and encouraged him that he has not had 1 single tube feed in almost 2 weeks! That's huge and we are soon to getting rid of that thing. When he gets that thing out of his belly, I am going to throw a huge party and you ALL are invited!! He's growing and thriving and talking up a storm! We've had some good nurses and some not so good, but after our beloved Curt ( Will's very first nurse) left I felt like we would NEVER find anybody that would live up to the standards he set! Maria exceeded those expectations and she brought unconditional LOVE and COMPASSION to Will for the past ~15 months! When talking with Maria when she first started, I knew it was her goal to work with hospice patients one day.....I was thinking "wow, that takes a special person". Little did I know just how special she was and is! I'm thrilled to report that Maria got a job working in hospice. I can't think of ANYONE more suited for a position like this....other than Maria! HR from her new employer called to ask me a few questions and I told them how lucky they were to get her! You can interview someone all day long and size them up, but you really don't know what you're getting till you work with someone....I told them they hit the JACKPOT!!
Maria, Thank you will never be enough, but please know how much we LOVE you! You will ALWAYS hold a special place in our hearts..... we are forever grateful! Will asked to put his 2 cents worth in...so I said OK...just this one time!
Dear ReRe,
Thank you for taking care of me just like my mommy and daddy would do ( maybe sometimes a little better, shhhhh...don't tell them i said that!) I Loved you from the very beginning and I knew we were going to best buddies when you let me finger paint with pudding for the first time! Only you would laugh at me and smile...you even smiled cleaning up my mess! You let me twirl the fan, climb up on you like a monkey..drink pepsi and coffee...anything I wanted! I would try and test your patience sometimes and you still talked sweet to me! Even when I threw my plate of food in the floor! My mama would say "put that boy in time-out" and you would hold me and love me and tell me to straighten up before we both got in trouble! You let me watch " Yo Gabba, Gabba" for as long as you could take it! When I would cry to get out of my crib, you would hold me and let me snuggle with you and sleep until your arms and legs went numb! Sometimes I didn't want to learn or say my words but I knew it made you happy so I would try my best! You would let me take us to the park and you didn't even get upset when I got in that puddle of water on the slide! We've had so much fun together, running, playing, jumping...reading books ( I know...sometimes I like to read the same book..over and over and over!) I could go on and on. For the record, I know your name is ReRe, but I still like to call you ma-ma :-) I'm going to miss you, but you are SO smart and I know other people need your help! I'm so glad you are going to church with me now...I'll get to see you every week! You need to sign up for the nursery so you can teach some of those people how to play with kids! I love you ReRe! I hope you LOVE your new job! Tell my mommy to schedule us a play date for the trampoline real soon! Love always, Will
"Whatever you do, work at it with all your heart, as working for the LORD, not for man."Colossians3:23
