Ladies and Gents we have happy news, and I have no doubt your prayers and the power of our God are the reason for it.
In my last post I shared with you the news our specialist gave us about Mabee's heart and the stress it was under. Whether it was due to the genetic abnormality or pressure from her very enlarged kidney, we don't know, but her heart was working too hard and fluid built up around it. We went to the doctor a few days ago and through ultrasound he noticed the fluid is back to normal levels! We are so happy to share this news, and this victory with you! Thanks so much to everyone who is partnering with us. In the past I've called this "our struggle" and "our journey", but the more I think about it, it's just life. Joy and I are seeing the Body of Christ working the way it was designed to, with people bringing us meals, prayer groups when we are at worship, and an unnumbered group of prayer warriors petitioning God on our behalf every day. I've also noticed another prayer being answered. One of my main requests to God, and it took time to become an honest prayer, is that he be glorified through this. And I've got to say that we are watching people all over, friends and family, and people we don't even know, who share with us the new depth and understanding of God and how he loves. It sounds weird to say, but I am truly humbled that He has given us the opportunity to share Him through our pain and struggle. To all of the many people who have sent prayers for Mabee's prayer box, thank you; to the 50 women who took part in the baby shower on Saturday, you were a real encouragement to Joy and the other women present; to the men who set aside time to have breakfast with me on Saturday morning, I was uplifted. God is working. He is making all of us better by learning his love. My Prayer For Today: God, I'm encouraged right now, and it's not by anything I've done. But I'm watching your work through the hands of your people, whether they know they are doing your work or not. Thank you for the family of neighbors and friends you have put in our life. Thursday we go back to the doctor and I ask you to impress the doctors with Mabee's growth and stamina. I'm scared to have a handicapped child, but God, I'm learning to not worry about the future. You are teaching us to live one day at a time. We can't control the future, but you can. Please continue to grow us every day and continue to grow our patience and peace.
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The doctors aren't saying it, but it's pretty clear by their actions that they expect Mabee's birth to be sooner than later. They're rushing us to tour the Neonatal Intensive Care Unit, and their demeanor is increasingly somber. If we trust only in them, it won't be long. But, if we had trusted only in them all along we wouldn't be planning to have a little girl in the upcoming weeks. Our God is still growing and molding that little girl.
She is growing, but slowly. At our appointment last Wednesday she was up to 2 pounds 10 ounces, which puts her in the 18th percentile. A month before she was in the 25th percentile, so her growth is slowing, but not enough for emergency delivery. That's the next step. Each week we are going into the doctor's office for an ultrasound to measure her growth. And at this point it's a call for all hands on deck. If they see that her growth has stopped we deliver. Joy is seven months along now! She looks great, feels pretty good (accept for the heartburn), and continually feels our girl churning and turning in her womb. If we hadn't been going to the doctor we never would have known there was anything wrong. On the surface all things look and feel normal. There is one new development that I beg you to pray about. We've been placing a lot of hope and confidence in Mabee's strong heart over the last 3 months, but at the last appointment that hope was challenged. Her heart is strained and fluid is gathering around it. The doctors aren't sure if this is due to the genetic abnormality or if the polycystic right kidney is pushing up and causing problems, but her heart seems to be straining to do its job. And there is one other issue that I haven't mentioned, but it's been giving Joy great heartache. As we learned many weeks ago, there are two parts of Mabee's brain that are missing. The doctors haven't offered any conjecture as to what difficulties that may cause, but case studies show that people who are missing those parts of the brain often suffer from blindness and/or deafness. Maybe we just haven't prepared ourselves for that yet, but either or both are challenges we aren't ready to deal with. We know there is a high chance of delayed mental development, and we are ready for that, but to add a lack of sight or hearing is just heartbreaking for Joy to think about. Please pray for Mabee's sight and hearing, as well as our preparedness for whatever may come. A major answered prayer came Monday morning when my boss told me they had decided to make my job full time immediately! Financially, this is a huge blessing. In addition to the costs of preparing for a baby, medical bills are not cheap. We are seeing our specialist every week and our normal doctor every other week. We will also begin consultations with brain and kidney specialists very soon. I don't lay this out for pity, I want to share how God is providing. He is good. While work, hobbies, friends and yard work help distract me from all of these issues, my eyes were opened this week to a new depth of this struggle that Joy deals with alone. I can put other things on my mind to get away for a little bit, but she can't. Every time Mabee moves Joy is reminded of our struggle. No matter where she is she can't get away from the reminders of worry and stress. It hurts to know she deals with this constantly, and it hurts even more to know she deals with it alone. I thought all of this time that we were dealing with the same emotions, but her struggle is so much more involved. Please be lifting her up to our God. We are both ready for a conclusion of some kind, but the best case scenario means 8-10 more weeks of waiting and wondering. The longer Mabee safely stays inside of Joy's womb to grow, the greater chance she has to develop the tools she needs to live on the outside. God gave us a good piece of hope last week during the ultrasound. I didn't even think of it until I was laying awake in bed that night, but during the procedure the ultrasound tech said, "She's practicing breathing." She went on to explain that babies practice flexing their diaphragms in the womb to learn how to breathe, and the tech could see her doing that. My little girl knows how to do that. Her brain knows that's what she needs to know how to do, and she is already working on a fundamental skill she will need "on the outside." I can't wait to see her. But I hope I don't for another 8-10 weeks. I don't think God's done with her yet. Well ladies and gents, it's been a few weeks since my last post but there really hasn't been any big news. So I figured I'd just fill you in on a few odds and ends, all of which are encouraging things! I can use the encouragement, and I'm sure y'all are ready for some happy news too, right? First of all, I forgot to put into my last post a piece of info the doctor gave us that was VERY exciting to hear. About a month ago Joy and I both had our blood drawn so they could look at our genetic makeup to see if either of us has the same funky sixth chromosome as our girl. Both of our tests came back normal. According to the doctor that means we should not worry at all about future pregnancies. This was a one-time deal. (Insert prayer of thanks here.) About 10 days ago Joy went to the specialist for her standard two-week check up and they spent a lot of time looking at Mabee's heart. Everything looks great! She has a strong beat and they don't see any abnormalities in the heart at all. (Another prayer goes here.)
On March 3 Joy and I hopped on a plane and flew up to Colorado for a five-day getaway. What a blessing. The doctors originally told us they didn't want Joy getting away from town just in case, but they later changed their minds. A great man (Rusty Ridley) put us up in his family cabin near the Wyoming state line for a few nights, and we finally got to unwind. Cheap airfare and rental car made it even better! Two major blessings came from the trip. First, Joy and I learned how to be normal together again. With so much craziness going on it's really tough to be natural in the short time we have together every day, or every other day. Being away from television, internet, cell phones and work let us communicate naturally and learn how to be natural again. Thank you God. Secondly, God made himself so evident to us through his people. Whenever Joy and I have time off together we use it to go see family or friends. We LOVE our family and friends. But it's important to have getaways where it's just the two of us too. That was the plan for this trip. Don't spend time with anyone. That didn't happen, and I know it was God's plan. God showed his love through everyone we came in contact with. Rusty at the cabin, the Bullock family in Cheyenne, the Pattons letting us stay at their house on short notice, and the body of believers in Cheyenne where I went to church through high school all showed us Christ. I had no idea that whole church knew what we were going through, but we were so blessed by their encouragement and prayers. We tried to get out of town and away from people, but God had other plans. He wanted us to see his people - the other parts of his body - working on our behalf. We saw it and we were encouraged. Thank you to everyone who we ran into on the trip, and to all of you out there who are blessing us through emails, and messages of all kinds. When we got back from the trip there was a wooden box waiting for us. My sister Amy sent out a request over Facebook to anyone who wanted to hand write a prayer for Mabee. She collected them all together and put them in a beautiful box made by another friend. Through many tears we were unbelievably touched by the honest words of so many people out there. God used each of you, and I hope each person who wrote a letter was brought closer to Him by sitting down and writing it out. The box is still open for more letters! People keep asking how they can help, This is one way. We want to collect a strong cornerstone of faith for our little girl to look back on. If you want to send a letter for the box you can send it to me at: 1401 London Rd. Round Rock, TX 78664 We go back to the doctor on Wednesday at 10 a.m. for another ultrasound and measurement. Please lift this time up in prayer. Grace and Peace I'm behind the ball on blog posts, I know, but here is the latest update on our baby girl. (I've also updated our prayer request page if you are wondering what to pray about.)
Before I get started I want to again thank everyone who has kept us and our little girl at the feet of God through prayer. We are slowly learning the meaning of the words trust and faith while battling Satan's attacks every day. It's pretty easy to listen to his daily suggestion to worry and think only about the terrible things that could happen, but we are battling every day - only through God's power - to trust in the Lord and take this one day at a time. Joy has been doing this for a while, but my newest resolution is to cherish every day we have with our baby girl. I regularly get on my knees to talk to her through Joy's stomach, and thanks to the encouragement of our good friend Genevieve we are consciously making the effort to give Mabee wonderful experiences with new foods and views. We want to spend as much quality time with her as we can, not knowing what God's plan is for her. About a week and a half ago we went to see our specialist for an in depth check up on Mabee. We spent nearly an hour looking at her through ultrasound, which was great, but the news that came back was a little tough to handle. When he came into the room one of the first things he said was, "I am a glass half full guy, but I have to be honest and tell you that your risk of still birth is very, very high." The first very was enough, but the second one (which I wrote down in my notes) really hit home. He doesn't think she's going to make it and that was his way of saying it. His issue wasn't with any of the problems we already knew about, this time it's her size. At her age she should be growing at 100 grams per week. She is only gaining 80 each week. Eighty percent isn't so bad right? Well, the way they measure her weight is with physical measurements or her body, and her abdomen is swollen from the kidney cysts and extra fluid. So the weight of 1 pound 11 ounces they gave her is probably a little more than she really is. Everything else was status quo. There was a little bit of good news - the fluid in her abdomen was very minimal. We were pleased to hear that. He was most worried about her stunted growth. If her growth slows more, or even stops, there will have to be some decisions made. Do we deliver early to try to give medical science a chance? Do we let her stay inside and trust that God has designed a gestation process that works for babies that are fit to survive in the world? These of course are only hypothetical questions and I REALLY don't want 50 people giving suggestions on what to do, but they are real questions that may have to be answered. Very scary questions. So here is my daily prayer: God, I trust you. You have been faithful to your people for thousands of years in their successes and failures. In our weakness you are faithful to discipline us and lead us down the right path, and in our triumphs you are faithfully glorified. Be faithful now and hear this prayer. Please take away any decisions we may be required to make on behalf of Mabee's life. You are the God who gives life and takes it away. Please be the one who makes this decision. If this child, this little girl you have blessed us with is meant to live in this world, please make that evident to us. Please let her live until it is safe to deliver her. I'm scared of making decisions God. Every day I ask you to be in control of my life, and I know you are in control of this process. Please take us out of it. As I mentioned in the intro for this website the purpose of this blog is two-fold: to inform everyone of the updates on our precious baby girl and to give myself a creative outlet for the stress and uncertainty that comes with being out of control. Today I don't have any updates. This post is solely to release the pressure that is building inside of me. (Click the left arrow at the top of your browser to return to Facebook, CNN, Twitter, or whatever page you were on before you got here if you aren't interested in my ramblings.)
If you've ever met me you already know I'm paper thin. I wear my emotions on my sleeves, discord hurts me deeply, and it doesn't take much to emotionally drain me. My physical body is pretty weak, so when the emotional energy is gone the physical follows. For the last seven weeks - since we found out about Mabee's physical problems - I've been a shell of myself. Emotionally exhausted, I've become a hermit and have let the guise of rest become my passport to self pity. Rest does nothing but perpetuate the problem, because my struggle isn't physical it's mental and emotional. After three hours of television tonight I finally decided to start moving. I thought about going running (another way to ignore the real problems I'm dealing with), but it was too cold outside so I went to the book store in search of good reading. I wanted something along the lines of, "Lost in the Dark: Finding God When You are Literally Laying Around the House Lost in the Dark", or "When God Comes to Find You Because You Are Depressed and Won't Try Hard Enough". As you can probably tell by the book titles I was looking for, but never did find, I've been convicted recently of my impish efforts towards a real relationship with the Living God. Preparing for what is to come, could possibly come, or what could be taken away from us has forced me to take a rigid inventory on my faith and the way I look at God. I'm not surprised by what I've found. Until 7 weeks ago, through 27 years of life my faith had never been tested with doubt, and I've never REALLY turned over control of my life to Him. I believe in Him, but that's not enough. I talk to him throughout the day, but I think it's hard for Him to hear half-hearted prayers from a man who rarely falls to his knees to experience true communication. I need to offer more. Not for any benefit that could come to me, but because I'm grateful for the grace and mercy of a glorious God who loves me. When anxiety and stress overcome me I nearly always use the same outlet. Knowledge. I LOVE to learn about new things, and it's nearly a perfectly guilt-free distraction, but it's still an avoidance from real issues. Tonight at the bookstore I came across "The Imitation of Christ" by Thomas a Kempis. Reading through the first few pages convicted me almost immediately with quotes like: "Esoteric words neither make us holy nor righteous; only a virtuous life makes us beloved of God. I would rather experience repentance in my soul than know how to define it," and "If you are looking for knowledge and a learning that is useful to you, then love to be unknown and be esteemed as nothing." This took care of my thirst for knowledge that was keeping me from addressing real issues, but it was the opening passage of the book that really grasped me. ""Whoever follows Me will not walk in darkness," says the Lord. These are Christ's own words by which He exhorts us to imitate His life and His ways, if we truly desire to be enlightened and free of all blindness of heart. Let it then be our main concern to meditate on the life of Jesus Christ." And there it was. I wanted a book for when I was "Lost in the Dark" or one that counseled me on "Letting God Find Me", but Kempis had the answer in the opening verse of his book. Whoever follows me.... I knew what I was lacking, and I've always known the scripture, I guess I just needed to hear it from a man who has been dead for 540 years. Maybe I should have listened to the man who originally said it, a man I know personally, a man whom death could not hold 2000 years ago. Pretty powerful stuff. So this is where my journey begins with my main concern being to meditate on the life of Jesus Christ. And it's all thanks to a little girl I haven't met yet. Thank you Mabee for being such a strong conviction and connection to the God who made you just the way you are. You're sharing God's blessings with me already. First, I want to thank everyone who has been petitioning the Father on behalf of our family. There is no doubt we have been living by His strength lately, strength you have asked him to grant us. Your notes on Facebook, email and through the mail lift us up every day. Each morning I reach for my phone and a message from someone gives me the strength to get out of bed. Thank you all.
Joy and I are walking side by side on two different paths right now. I can still hold her hand, but we are definitely in different places mentally about everything. I'm being cautious. Joy is not. She has decided to move forward full speed and throw caution to the wind. She even painted the nursery last week because we are having a baby! That's a very real thing to her because she feels our baby girl kicking inside her belly every day. Joy knows our daughters strength through the pain she causes though each somersault in the womb. I don't get that. I hear what the docs say, I research it, and I draw conclusions from that. Currently I'm prepared for the worst. The "snow-pocalypse", as the southerners are calling it, hit the north end of Texas. We didn't get much of it in Austin (just cold), but Dallas got hit pretty hard and that's where we were set to go for our MRI appointment. After a VERY rough day filled with anxiety that manifested itself as gut-wrenching sickness, we finished the drive to Dallas and spent the night with my Aunt Susan and Uncle Buddy. It was a real blessing to spend time with them. It was great to have their prayers before we left and Aunt Susan has the "mom hug" down pat. I needed that this morning. The MRI was pretty incredible. I sat in the back of the room while Joy sat motionless for 40 minutes. Who knew they did MRI's on babies? Aside from a short bout with claustrophobia, Joy did great. Her ability to lay still for that long without moving was quite admirable! I know it sounds silly, but I love her for that. We weren't expecting to get results from the MRI today, but when it was finished Dr. Twickler -- one of the top baby radiologists in the nation -- sat down to give us her findings. She started at the brain and quickly showed why we made the tough trip. The ultrasound photos weren't conclusive, but the much clearer picture from the MRI showed me that the brain situation wasn't quite as bad as I had expected. While her brain was formed without two parts (the corpus callosum and the cavum septum pellucidem) the doctor speculated that a child with a brain like that would experience slower learning and struggle with coordination, but could live a pretty normal life. That's good. What wasn't so good was the next finding. We talked about the right kidney that is non-functioning, then she pointed out what she called abdominal ascites. This means there is fluid in the abdomen that shouldn't be there. That's scary. The brain and the abdomen have fluid out of place. The truth of the matter is that any one of these issues would be something the doctors monitor throughout a pregnancy. But Mabee's list of concerns is getting into the double digits now. That's a problem. And for the third appointment in a row we had a doctor talk to us about the real possibility of losing our little girl before or right after birth. So, now we wait. We are planning to have a happy little girl who we will have a long life with, but first we have to make it to the due date. Then delivery. Then through surgeries. There is a long journey ahead, but we're going to take it one step at a time. Lets just get this girl born. I'll be very honest. Satan is working hard on me right now. He's beating me up and I see him sneaking into the lives of the people around me too. This is my prayer: God I'm tired and I feel worthless to the world around me. While I know I need to recuperate and take care of myself I know Joy and other people in this world need me. Please fill me up Father. Please let me experience my grief in a more healthy way. Father, through this agonizing process teach us to lean only on you and your strength. We went to the specialist's office on Wednesday afternoon to find out what the final results were from the amniocentesis. We already knew they were abnormal, but we weren't sure how abnormal they would be. We were very pleased to hear the doctor say that the ultrasound showed nothing had gotten any worse and our baby girl is strong. They said she looks petite, but strong. I can deal with that.
The doctor told us that all of the chromosomes were there, and that was a relief, but the #6 chromosome had some extra matter on it. They aren't sure if that's what is causing the problems for Mabee, so in an effort to rule out some possible causes they had Joy and me go get our blood drawn. They will send the blood off to draw out a picture of our chromosome's, and if either of us has the same malformation on the #6 chromosome it will mean the issues with the baby aren't caused by the genetic makeup. They would have to look elsewhere for the cause. We also got to spend an extended amount of time with the doctor talking about holoprosencephaly. He basically said he wasn't positive that was what the problem is, but he's pretty sure. So we are planning a trip up to Dallas this month to get an MRI done on the baby. This will give us a clear picture of her brain, so when we go to see a neurologist to consult about what we should do at birth he/she will have a good idea of what we are dealing with. There are four different stages of holoprosencephaly, and it looks like Mabee has one of the less severe ones. It's called semilobar, and it basically means the lobes of the brain haven't separated. This means the part of the brain that holds the spinal fluid is right next to the brain.... not good. Our doctor estimated 1 in 5,000 babies in our area are delivered with holoprosencephaly, but the numbers in many case studies I have been reading paint a much tougher picture. About 1 in 250 babies formed in utero have the disorder, but only 1 in 16,000 live through birth. SO, there are the facts. Now we wait again for two weeks. I think both Joy and I are at peace right now. There are a lot more things to do, many more doctors to visit and consult with, and an unnumbered amount of hours we will both spend thinking about this baby girl we love, wondering if we will get to meet her. I sure hope so. That's a word you don't want to hear in reference to a test on your child's genetic code.
Yesterday Joy got that call from our doctor's office. Two weeks ago they performed an amniocentesis when the ultrasound showed "great concern", and a few days later they said the initial results showed no abnormalities. The more detailed results show otherwise. Until yesterday I had been enjoying the peace God provided, but Satan took over again with fear and worry. Sleep was terrible, work is unproductive, and I don't feel like myself. Maybe that's because the results of this test will tell me more than I want to know right now. I've been prayerful about a lot of things over the last month (It was a month ago today when I got the call from Joy telling me the ultrasound showed some scary things.) But I've noticed my prayers changing. I still pray for miracles, but more often I'm asking God to prepare my heart and make me the strong man Joy needs. Most people's response when I tell them what's going on is, "God is making you stronger for things to come." I've got to be honest, I hate that answer. I don't expect people to understand where we are emotionally right now, but I'm just not mature enough to accept that answer yet and that's not anyone else's fault but mine. So, we go to the doctor at 1:30. Less than three hours away. I'm scared. Life changes today. Here is my prayer. God, I'm ready for joy. No matter what happens today I pray that we have enough information that we are able to accept what is happening so we can find joy in our baby girl. I pray we can be happy and peaceful enough to celebrate the already effective life of our baby girl. Here is one of the ultrasound photos we got from the specialist. I know it just looks like a huge head, but REALLY it's the little girl God gave us. She is wonderful!
I'm exhausted. I feel like I haven't slept in days, and even when I sleep it's really hard to get out of bed. I don't feel depressed -- I know that feeling all too well -- I just feel like I can't get enough rest. And as a Colwell man I'm prone to crying at the mere appearance of an emotional moment, so that doesn't help. Every time I have to re-tell the story or explain what's going on I get drained all over again.
Joy and I had a great day together on Saturday. After a rough and emotional morning we took our dogs for a hike through the woods, I took her to get a foot massage, and then we had a date night at the movies. It was a fantastic time to spend laughing and smiling; it was just what we needed. One of my goals while dealing with all of this is to be honest with myself, God, and everyone else around me. I know what people want to hear, and I know what I'm supposed to say when asked certain questions, but I'm throwing all of that away and just being honest. This made church especially hard on Sunday morning. We have a large circle of friends who love us there, so everyone asked the dreaded question "How are you doing?". Is there a way to answer that question honestly without yelling? Worship was equally hard. The final song of the service was "Blessed Be Your Name". There couldn't have been a more hard hitting song for me, and when the final verse came in, repeating "You give and take away, my heart will choose to say Lord Blessed be Your Name", I lost it. Prayer time with people who love us followed, but I was wiped out for the rest of the day. I've had a lot of time to reflect today, and I think I've covered the entire spectrum of emotion while doing so. I've been angry, but I've also felt peace while hugging Joy and while spending time with my neighbors after she went to work. I am ready for rest again. My Prayer For Today I know how blessed we are as your people God, but I'm also a weak man. It doesn't take much for Satan to push me over, and once I'm down my first instinct isn't always to reach or look for you. God I ask you to control my eyes when I am hurting. Firmly fix them on you. As much as I want them, I don't need answers. As much as I struggle, I don't need control. When I see you clearly I am at peace knowing that you know what is best for me. |
AuthorStephen Colwell Archives
April 2012
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