Jolie Lauren
Our dear, precious Jolie Lauren Monroy was born on Saturday December 20, 2008 at 10:49am. She weighed 3 pounds and measured at 14 and a half inches long. In the first few minutes after birth she was whisked away by the NICU staff, she had a hard time breathing, and she had a tear in her lung. She had arrived 2 months early due to Preclampsia (very high blood pressure). It has gone away since giving birth, thank God! The staff was able to stabilize her when they took her to the NICU. She recovered quickly with flying colors for the first 11 days. She was able to wean her self off the ventilator and was breathing on her own. She was doing great. On December 31st she began to rapidly slow on her breathing and her heart rate was dropping fast. The wonderful NICU staff reacted quickly and Jolie was put back on a ventilator to help stabilize her breathing and give her some pressure assistance. She is currently still on the ventilator. She is feeding more and more daily. She LOVES to eat. She has a full head of hair, and she looks just like her daddy, what a lucky girl.
What an amazing gift from God she is!
On January 2nd we received confirmation from our doctor that what he had feared was indeed true: our precious little girl, Jolie Lauren, has a chromosonal abnormality known as Trisomy 13 or Patau Syndrome. What this means is that she has an extra 13th chromosome, which consequently puts her little body at war with itself. She is, as the medical world deems her, “incompatible with life.” It’s hard to put into words what you feel when you hear the news that, barring a miracle from God, your baby does not have a chance to live. Already we have experienced shock, grief, and such an intense sense of loss. I feel loss at the thought that I cannot joyfully tell people that Jolie will be ok without a miracle. I feel the loss of knowing that Miguel and I will not be given the opportunity to raise this little angel and watch her grow up. That is definitely the hardest reality of all. But in the midst of that, we are so grateful to God that He has given her to us. We have been praying for a miracle since we received the news that things seemed a little abnormal. I know with everything in me that God has heard every one of those prayers, and He is answering us with a miracle. I know that however long she is here, Jolie is a miracle. Do we understand why this is happening? We don’t even begin to. Yet, even without the understanding, I know that God has chosen to give her to us for a reason. It wasn’t a “freak” occurrence, but rather something that God wanted for us. That doesn’t mean I would have chosen it on my own, because it would have been the farthest thing I would have ever allowed. But there is great peace and joy in knowing that there is a plan for her that is beyond my human understanding. It is my hope that through this blog our friends, family, and anyone else who wants to be part of our journey will be able to better understand what we are feeling and thinking and know better how to pray. I know we can’t do it on our own, but maybe that’s the whole point. Maybe one of the biggest lessons our precious angel Jolie will teach us is daily dependence on Him. As we remind ourselves daily, God just asks us to go in the strength we have. That’s what we plan to do each step of the way. Thank you for walking this road with us.
Jolie is a beautiful baby girl! In fact, to my untrained eye, I’d say she looks absolutely flawless. This was one of the hardest things for us as we sat through the diagnosis the doctor gave us on January 2nd. As I heard the diagnosis and the description of the disorder all I could see was this sweet flawless baby. She moves and kicks and has a character all her own, all signs in my mind of a thriving healthy little baby. But the reality is that by the time they had finished, the doctor had come up with a laundry list of problems: 4 holes in her heart, premature lungs, extra finger and two extra toes, rocker foot, cataracts in her eyes, and the list went on and on. All of these things on their own are fixable, but each symptom simply points to the greater problem, which is that each and every cell of her body contains too much information because of the extra 13th chromosome. This is the condition for which there is no cure. The weird thing about trisomy 13 is that there is no way to predict the severity of her case. All of the problems with her organs are not really indicators of how long she will survive. If she does, she could live any time from a moment, a day, a week, a month, or possibly even a year. Medical science just doesn’t have any accurate way to give us an estimate. Not knowing is certainly one of the biggest challenges; another is being completely powerless to do anything to help her. As her parents, that is so hard to accept! That’s where the day-to-day thing comes into play. This continues to be my biggest prayer request, that God will give me strength for each day and that that will be enough.
Every day I find myself more and more thankful that God did not make us for this world. I realize that technically speaking, He did make us for this world for a certain period of time, but the days He ordained for us here are short! Whether it be one day or 100 years, in the grand scheme of things it is never long enough. I don’t know whether I would have been excited about this, say, just three months ago. I can guarantee I wouldn’t have been doing handstands about it in high school. I thought there was just too much life to live, to be happy about the fact that it is so short. But, with each passing day, I find myself more and more aware that this life is not what we were created for! The pain we are all going through is just not what was supposed to be! Just today I have heard from people who are experiencing a variety of sufferings and heartaches from all ages. My eyes have most definitely been opened! No one is immune to the hurt and pain that can hit at a moments notice, and the pain is all around us! Regardless of whether a person knows God or not, the pain is real and unavoidable. The only difference is, that for the person who knows God, he has the concrete assurance that there is a reason for joy and hope in this life because of promise of being with God for eternity in heaven where everything is actually exactly as God intended without any of the scars and blemishes of this world to mar it. There will never be enough words for me to express how grateful I am to Him for that!I don’t want to give the impression that I now feel like life is a burden that I must endure, because that’s not how I feel at all! I love life, and I think that God intends for us to live, even in this vastly imperfect world, with laughter and fun and enjoyment. However, I give thanks everyday for giving us life. I think about the specifics of her condition often, but she also reminds me of the condition of the world around me. She has helped me to see past myself and my own small concerns and to see the world around me with new eyes. She has helped me to see other people’s hurts, and she has helped provide me with an empathy that I was lacking in up to this point in my life. God has done all this through her already, and I know He is certainly not through using her in my life and the lives of other people. She is without doubt one of God’s greatest gifts to me.
Jolie is a beautiful baby girl! In fact, to my untrained eye, I’d say she looks absolutely flawless. This was one of the hardest things for us as we sat through the diagnosis the doctor gave us on January 2nd. As I heard the diagnosis and the description of the disorder all I could see was this sweet flawless baby. She moves and kicks and has a character all her own, all signs in my mind of a thriving healthy little baby. But the reality is that by the time they had finished, the doctor had come up with a laundry list of problems: 4 holes in her heart, premature lungs, extra finger and two extra toes, rocker foot, cataracts in her eyes, and the list went on and on. All of these things on their own are fixable, but each symptom simply points to the greater problem, which is that each and every cell of her body contains too much information because of the extra 13th chromosome. This is the condition for which there is no cure. The weird thing about trisomy 13 is that there is no way to predict the severity of her case. All of the problems with her organs are not really indicators of how long she will survive. If she does, she could live any time from a moment, a day, a week, a month, or possibly even a year. Medical science just doesn’t have any accurate way to give us an estimate. Not knowing is certainly one of the biggest challenges; another is being completely powerless to do anything to help her. As her parents, that is so hard to accept! That’s where the day-to-day thing comes into play. This continues to be my biggest prayer request, that God will give me strength for each day and that that will be enough.
Every day I find myself more and more thankful that God did not make us for this world. I realize that technically speaking, He did make us for this world for a certain period of time, but the days He ordained for us here are short! Whether it be one day or 100 years, in the grand scheme of things it is never long enough. I don’t know whether I would have been excited about this, say, just three months ago. I can guarantee I wouldn’t have been doing handstands about it in high school. I thought there was just too much life to live, to be happy about the fact that it is so short. But, with each passing day, I find myself more and more aware that this life is not what we were created for! The pain we are all going through is just not what was supposed to be! Just today I have heard from people who are experiencing a variety of sufferings and heartaches from all ages. My eyes have most definitely been opened! No one is immune to the hurt and pain that can hit at a moments notice, and the pain is all around us! Regardless of whether a person knows God or not, the pain is real and unavoidable. The only difference is, that for the person who knows God, he has the concrete assurance that there is a reason for joy and hope in this life because of promise of being with God for eternity in heaven where everything is actually exactly as God intended without any of the scars and blemishes of this world to mar it. There will never be enough words for me to express how grateful I am to Him for that!I don’t want to give the impression that I now feel like life is a burden that I must endure, because that’s not how I feel at all! I love life, and I think that God intends for us to live, even in this vastly imperfect world, with laughter and fun and enjoyment. However, I give thanks everyday for giving us life. I think about the specifics of her condition often, but she also reminds me of the condition of the world around me. She has helped me to see past myself and my own small concerns and to see the world around me with new eyes. She has helped me to see other people’s hurts, and she has helped provide me with an empathy that I was lacking in up to this point in my life. God has done all this through her already, and I know He is certainly not through using her in my life and the lives of other people. She is without doubt one of God’s greatest gifts to me.
I cannot thank our friends and family enough for all of their prayers, love and support. This has been a difficult time for Miguel and I and we thank you from the bottom of our hearts for all your love and kindness!!!!!!!!
I will continue to update this blog to continue to keep you informed on Jolie's progress.
Feel free to leave a comment on our page. XOXOXOXO
