We have had a day of ups and downs. I knew this morning that Cayden wasn't feeling well but the mother instinct tells me that I can rub his belly, hold his hand, and rub his head and make it all feel better. Unfortunate mommys touch just didn't do it. A lot of times I try to be strong and hold fast to my faith. I know that God has his hands on us, and I do NOT doubt that he is the healer above all. But on days like this, when he is in my arms and still uncomfortable, my heart sinks lower than low. If you want to know what true pain is, watch your baby cry with no voice. I normally don't blog when I'm feeling down but I feel like I'm being fake for only showing the happy, steadfast side of me. I look at caydens perfect face and study his eyes, his nose, chin, lips... And he is the most perfect baby I have ever laid my eyes on. So tell me this. How is it fair that all of these other moms get to sleep with their babies right next to them. I don't even get to pick my baby up and hold him without the help of nurses dragging all of the wires and tubes with him. I have never been jealous over other peoples lives until now. I know that God doesn't want me to be that way and I'm really trying to work on it. But the human part of me just wants to scream out and cry! Cayden is the best kind of gift from God. He is strong, he is the most loved a child can be and nothing about him makes me wish he was someone else's baby. That's why it hurts so much. He is MY perfect baby. But MY perfect baby shouldn't have to struggle to breath, and he shouldn't have to cry without a voice. He should be at home in my arms. God give me strenght to deal with the daily issues that come before me. Give me courage to stand up to the enemy and say YOU CAN'T HAVE MY JOY! Most of all, give me peace. I do not want to be jealous God. Help me to understand the gifts In this life you have given us. Surround this family with the protection of 10,000 angels and lay your perfect healing hands on our sweet baby boy. YOU ARE A GREAT BIG GOD!!! Thank you for being my strength in all my weakness. Help me to be more like you. AMEN!

faith and friends

Well, its been a long emotional 40 days since our baby boy has been with us. We have had so many emotions running through us. Between the heartaches, anger, frustration, and tears, we somehow manage to ke ep smiling. We know that we are truely blessed to have so many wonderful friends and family who comfort us in our times of need. Most of all, we have found the faith that we shoved in the back of our minds. If there is one thing this whole experience has taught us, its that we are completely lost and helpless without God. Someone recently told me to keep the faith! I replied, I may lose my mind but ill never lose my faith!! It's funny how you can grow up surrounded by people who are constantly pounding our heads with words of God and having true faith, believing that God is the healer, etc. And yet we still think we can go through this life on our own. I guess we just have to learn the hard way sometimes... I was blessed to have a wonderful grandfather who never showed us a crack in his faith. He woke up every morning with a smile on his face, always said his prayers at the table even when he was eating alone. He wasn't the kind of man who pushed his faith on you but it just kinda rubbed off of him. I always felt the strongest and safest when he was around and I know that was his faith glowing! He was a true example of Christian faith. We don't have to walk around screaming in peoples faces to TRUST GOD! If we have real faith, it will show in everything we do. I'm not pearfect by ANY means and I make several mistakes everyday but I am 100% positive that God forgives me because he is a merciful God. I also know 100% that God is totally in control of our lives. I am most thankful that God sends people into our lives to help us when we are in doubt. He has placed so many friends and family and even strangers to get us through these times. If there is one thing I can rely on every day, it is that someone is going to send us kind words that remind us that we are not alone. Our support system is unbelievably huge! I get so many emails, text, and calls daily that I can't even reply to everyone! How did we get so lucky to have so many people who care about this tiny little family?! I know that I have been all over the place on this blog but I have way too many thoughts going on at one time. The true reason that I wanted to blog today is I just want to thank EVERYONE for showing us what true friendship means and to keep the faith and send up prayers with us! Where 2 or more people agree, God says it will be done. So that tells me that our sweet Cayden is going to prevail! He will come home soon, and he will be able to go out and give his testimony to all of the non believers!!! Thank you God in advance for healing our sweet angel!! We are ready to be a part of this plan you have made for us!

Today was the first time I saw my sweet baby boy smile for the first time. Behind that hateful ventilator that gum showing smile melted my heart! I fell in love a hundred times over again! I've been a little discouraged lately because it physically hurts my heart that I can't just pick my baby up anytime because of the tubes and monitors. I can't even give my baby a sink bath like other moms. The only thing I can do is rub on him and kiss around all of the wires. Jealousy sets in. I see these other moms who didn't care as much as I did about their pregnancy who smoked, drank, done drugs etc... And have perfect babies. It honestly hurts! I did everything right. You don't understand what this feels like unless you have been there. But today when I was singing to Cayden and rubbing his belly he showed me that even behind the wires and tubes, he sees me and he feels all the love I am giving him. I am realizing how much of a precious gift god has given me. How did I become so worthy to have this kind of love? Wow. We may not have the ideal lifestyle right now but ill just tell you, I don't care if I have to stay in that hospital for 10 years. Because that's how big my love is for Cayden. If I can love him this much, I can't even begin to think about how much God loves me! So my thought for the day is thank you God for trusting me with this wonderful child. Thank you for showing me the love between a baby and a mother. And most of all, thank you for loving me so much to give your son for me. I can't imagine the pain God must have felt. But now I get it. There are going to be really tough times, especially having a baby in rnicu. But Cayden Noah Willis is a true love gift from God and there will be peace in the midst of the storm!

perfect life? i think not...

Everyday I am asked by at least one person, "how do you keep your sanity?" Well, my answer is, without the ultimate love of Christ and the support of family and friends, I'd never survive... I wake up everyday and lay in bed, if only for a moment, and thank God for this precious gift that he has given me. Sure, to most it would seem like a heavy burden to bear. If you had asked me 2 months ago if I could do this, I would quickly reply 'no way!' We always want the easiest tasks of life. We always pray for God to give us the best of everything... Are we so arrogant to think that Gods plan isn't perfect enough for us? How ungrateful! I have learned through this experience that all of Gods gifts are precious. Do you think Jesus looked forward to dying on the cross? No. But he made the ultimate sacrifice for us. I'm sure at this point I'm turning into a broken record but I am so ashamed that I ever doubted God and his plan for me. Yes I do have times where the walls cave in and I need to just step outside and breathe. But I know that my strength comes from God. I also know that God has big plans for this family. It won't be an easy task and I'm glad of that. Nothing worth having is easy, and when we finally do leave this hospital, I will appreciate every moment I have with this precious baby boy. Thank you God for blessing me with an imperfect life. I wouldn't have it any other way!

Our Miracle

Like any other couple awaiting the birth of a child, we prayed for a happy, healthy baby. We had a wonderful pregnancy with NO complications. So when we were admitted to be induced on August 16th, we expected nothing less than a smooth delivery. I gave birth by C-section on August 17th to a beautiful baby girl weighing 6 lbs 2 ounces. I wasn't allowed to see my sweet angel until the next day. I wasn't sure why but I didn't ask many questions because I was told that everything was fine and she just needed time in the oxygen tent. While my heart was breaking for not seeing my baby, I knew that it was the best thing for her. The next day was when our roller coaster began rolling on the tracks... I was aware that my baby had a few things going on. She had an extra digit on her hand, extra toe and webbed toes on one foot and the other was clubbed. To me, that is nothing but minor issues. However I was not prepared for what I was being told next. My baby was being sent to UAB due to issues with her lungs and heart. My heart was absolutely broken. Because I had a C-section, I couldn't leave when she did. As any father would have done, Shawn went with the baby, and my mother stayed with me. I was devestated. But it was nothing compared to what I would be facing in the next 2 weeks... Finally after 2 days of not being with my little family, i was finally discharged from the hospital and on my way! We had a good couple of days. She was just like I thought any newborn should be! While she was being fed, the nurses noticed that she hadn't produced any stool so we were sent to children's hospital because they were better with the digestive tract. We were then told that our daughter had Hirschprungs Disease, which affected the nerves in the lower bowel. We would require surgery... There was another issue. All of these things were being caused by one big syndrome. Through genetic testing, we would soon find out that she is positive for Smith Lemli Optiz syndrome. (I won't go into details about that because it would take 20 pages but feel free to look it up) while we were concerned about this, it was kind of stuck in the back of our minds because we were focused on surgery... The great news, is surgery went perfect! Although we are not thrilled about our baby being stuck with a colostomy bag, it was worth everything! That meant we could finally start feedings! After that surgery, a blood transfusion, a spinal tap, and another surgery placing a picc line in to reduce the amour of sticks she would have from iv's... We thought we were over the worst! Then came the BIGGEST shock of our lives... The Dr's eNter to meet with us to review all of the issues and the where do we go from here's. While at first everything was fine, we were then told that our baby girl was actually just the opposite... He was actually xy (male). WOW... What do we do? How are we supposed to deal with this? Everything we have ever known is totally different. We were devestated. I felt like I was mourning the death of my daughter all the while welcoming the birth of my son. All that was for sure was that this baby needs us now more than ever... After many tears and breakdowns that night, we knew that we needed a new name. Cayden (strength) Noah (survivor) Willis. It was perfect. Nowbwe needed to pick up all of the pieces. For a couple of days everything was wonderful. God had given me such peace about this. We were prepared and ready to face the world! Until... The drs called for another meeting... We were asked not to rush into anything. No permanent name change, because even though he was a boy... They had to test both estrogen and testosterone... They wanted to see what he reacted to best... So now we are confused again! How are we supposed to deal with this? Our child can't go without a name! And again after many tears and lots of prayer... I was so at peace with him being Cayden Willis, I decided that God is in control. And no matter what, we are prepared to face anything. So we are now back at UAB to deal with the heart/ lung issues! We have been on meds trying to control the pulmonary hypertension and trying to stay off of the ventilator. He also has a premature pda. Which is a small hole sending blood to his lungs... So. Today we are off of the ventilator!!! Very exciting!!! And with Gods healing hand, we will overcome this heart issue... My biggest reason for posting the blog is, even though we don't have any absolute results for anything, everyone has been so wonderful and supportive and I was so ready to let everyone know!!! And its wierd that everyone keeps calling him Evie! Lol. We have learned so much about the importance of God and love, and strength, and having the ability to hold each other together. Without the love of my God and shawn, i know that I couldn't survive. God has such big plans for this family. And we are so ready to show the world just how amazing our son is!!!! Thank you for all of the thoughts, prayers, and donations. I wish we only knew how to repay each person. Keep the prayers coming because God is faithfully answering everyday!