June 6- June 10

I am absolutely exhausted as I type this, so it will be short and sweet. I am so ready for bed!
I made two trips to UVA this week for various appointments. On Monday, Sean and Isaiah were able to go with me. It was a fun little family road trip. Thanks to a gift a family member sent we were able to stay the night in a hotel.  Isaiah had a blast running around the hotel room and we ate Mellow Mushroom pizza.... which I love! I had two appointments that day: one with high risk OB to make sure I was doing ok and ultrasounds to make sure Sadie was ok. I am doing fine and thankfully, Sadie is stable as well. Her fluid was at a 10.5 which is higher than it has been in weeks. Her right kidney hadn't grown any. Bed rest has been good for both of us.Today I had two appointments: one with ultrasound and the second with a doctor from the NICU (Neonatal intensive care unit). Again- Sadie is stable. Her fluid and kidney are basically the same as Monday... which is so amazing considering for a couple of weeks it seemed like her fluid just kept going down and her kidney just kept getting bigger. She has stayed stable for 2 weeks now! What a blessing! Every week that she is able to stay in me is a week that she gets to grow bigger and stronger! My meeting with the NICU doc was basically to go over their "projected plan" for after Sadie's born, just to try and prepare us for what is to come. Then we toured the NICU as well as the unit that Sadie will be on after her heart surgery. There was a lot of information to take in and I asked lots of questions. There are battles yet to come, but I am grateful that I will never go into a battle alone. The Lord goes before us and surrounds us. Our trust is not in the skill or knowledge of the doctors or surgeons, but the Lord, who holds Sadie's life in His strong and loving Hands.
    Another piece of good news is that because she has stayed stable for 2 weeks, they are going to allow me to go to Roanoke this Monday instead of driving to UVA. So it will be an hour drive one way rather than a 3 hour drive one way. The doctors that had been monitoring me up until a couple of weeks ago, will continue to do ultrasounds and echos. As long as Sadie stays stable, I will continue to go to Roanoke twice a week. If anything changes in Sadie they will immediately send me back to UVA. But I am grateful for a break from the long drives. We are so grateful for how the Lord is not only sustaining Sadie, but us as well.   Again- we have been overwhelmed by our church family who have brought us meals, driven me to Charlottesville, and been willing to watch Isaiah when we couldn't take him with us, as well as continuously lifting us up in prayer. I can't imagine doing this without them. Honestly, I have struggled with having to be so dependent on others.  I realize it is pride to think you are independent in the first place, but it is so much harder to be served than it is to serve...I am learning. The Lord is teaching me so much about who He is. He continues to provide for us through His bride and through His spirit. We have been so blessed to see His hand working so intimately in our lives. It is truly humbling.  We know that there is still a long road ahead, but His grace is sufficient and He promises to daily bear our burdens.... He has been so faithful and we trust in His unchanging love.
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Enjoying being home with my boys

          The last blog update was from the night before I was released from the hospital. Before I left I was able to speak with the urologist and cardiac surgeon and got some good news. The urologist said that though he wouldn't know for sure until Sadie was born, he was fairly certain that her right kidney is not a multi-cystic kidney after all. He believes that it simply has a blockage. Which would mean that it wouldn't have to be removed and once unblocked, it may even be able to function! He said he wasn't yet concerned about the left kidney even though it seemed a bit larger than normal. The cardiac surgeon was very nice and realizing the task at hand seemed hopeful of its outcome. He said that he thought that the aortic coarctation and the hole in the ventricle wall could be fixed in one surgery and she shouldn't need any other procedures after that.
         I was released Wednesday afternoon on bed rest. The doctors in UVA and Roanoke agreed that since UVA would be delivering Sadie and responsible for her upcoming care, that it would be best to continue to go to UVA for follow-up until Sadie had been stable for a couple of weeks.  So... I will be going to Charlottesville twice a week for the next 2 weeks at least. If she continues to stay stable, they will consider allowing me to go to Roanoke for evaluation once a week and UVA once a week. The goal continues to be to do whatever necessary so that I may carry Sadie for as long as possible. She needs to grow stronger and so do her lungs. If there are any changes in the amniotic fluid or how her kidney is affecting the rest of her body, I will be readmitted and delivery may be necessary.
            I was pretty exhausted when I got home Wednesday night, but I was so thrilled to see Isaiah and he was thrilled to see me. Thanks to my mother-in-law, I came home to a clean house and a meal a neighbor had brought by. That night I slept better than I had in over a week. Thursday seems like a blur, I think I slept most of the day.... I was so tired.  Sean's mom did my laundry and Sean helped me repack my bag in case I was readmitted Friday. Friday morning my sweet friend Elzeline drove me 3 hours to Charlottesville and four hours back. On our way home, five miles from our exit, the interstate was closed and traffic was at a complete standstill for an hour. However, our trip there and back was such a blessed time. We enjoyed such wonderful fellowship that it didn't seem like we had been on the road for that long. Friday night (last night) my mother-in-law began the journey back home. I am so grateful for the week that she spent here caring for Isaiah and Sean while I was in the hospital. I just hope Isaiah didn't wear her out too much!
       I have two appointments at UVA on Monday. Sean, Isaiah, and I are heading up there Sunday night, thanks to a gift a family member sent that will cover the cost of a hotel. (There is actually a hospitality house that Sean and I could stay in for $5 a night, but sadly, they don't allow children to stay. ) We, as well as the doctors, are still just taking things one day at a time. We know that I could have to be hospitalized or go into delivery anytime, so we are enjoying our time at home together.  Bed rest at home is difficult, but Sean is so selfless and tries his hardest to do whatever necessary to help me rest. We have been so blessed by our church family offering to bring meals, visit, or care for Isaiah. Though it is humbling to have to be so dependent on others, there is no where else I would rather be. Our church is proving to live out the Gospel in our lives and truly act as the Bride of Christ. It is overwhelming to be so loved and cared for. We are beyond grateful. We know there is a long road ahead, but the Lord has been and will continue to be so faithful. Every day and week that I am able to carry Sadie, the better her chances will be. But as always, we don't look to statistics or chances, but to the Living God. He has made Himself so evident in this situation that we can't help but to trust in Him.

Possibly going home for a few days.....

        It has been a pretty uneventful weekend since I was admitted into UVA Thursday. They have been monitoring Sadie's heartbeat and doing ultrasounds every other day. Today I had an ultrasound and had my first fetal echo with the specialists here. The amniotic fluid, though low, is "stable", meaning it hasn't gone lower than what it was when they admitted me.  The pediatric cardiologist confirmed that Sadie will need an open heart bypass surgery within the first week or so after birth due to a sever aortic coarctation. She also has a medium sized hole in her ventricular wall. And though she has aortic stenosis, it is mild and not of much concern at this point. They are trying to take into account and prepare for how the condition of her lungs will affect her capability of withstanding surgery when she is born. This will contribute to decisions that need to be made concerning exactly when and how the surgeries are performed. I am currently waiting on the cardiac surgeon as well as the urologist to come by and discuss these issues further. I won't have any new information or insight considering her kidney until after I meeting with the urologist this evening. After all the needed medical personnel has evaluated me and Sadie, they will confer with one another and try as best they can to begin to build some sort of plan for the remainder of my pregnancy as well as Sadie's birth and care thereafter. They are looking at the possibility of releasing me tomorrow and having me go back to Roanoke on Friday to see how she does with me at  home for a couple of days. They will then reevaluate whether or not I need to be admitted on a long term basis, until it is necessary to deliver.
       Although my doctors are wonderful, I do not expect them to be God. They will plan the best they can, but I realize that they do not and cannot have all the answers. Even a well thought out plan can be thrown to the side at the moment of any change or "hiccup". Thankfully, God's plan cannot be thwarted. His plan is not based on possibilities or limited observations. He is not a doctor with limited capabilities, giving medicine in hopes that it will work.  He speaks and His will is accomplished, period. With a word, His plan is breathed into life.  His Hand is Sovereign and steady.  He is the Great Physician and perfect Healer.  He is the Creator and Sustainer of life.  Sadie will be born the moment He calls her forth and she will go home the moment He calls her home. I gratefully and joyfully rest in His Sovereignty. Again- I have amazing doctors and am so thankful for them, but my hope does not rest in their hands, but in Hands that are infinitely more capable, Hands that have held me not only throughout this journey, but my throughout my life, and Hands that have promised to never let me go.

In UVA until........

       I have been wanting to update for the past couple of days, but have been a little busy. Everyday this week I had been driving to Roanoke for them to monitor Sadie and keep an eye on my amniotic fluid as well as some other things. Thursday after the ultrasound the doctors decided that it would be best to admit me into Roanoke hospital and transport me to UVA in Charlottesville, Va. UVA is three hours from our house and where they plan on delivering Sadie. Their choice to send me to Charlottesville was based on a few things: 1. The level of amniotic fluid.  2. Her diaphragm wasn't expanding.   3. They felt it necessary to monitor her daily and we were coming up on a 3 day weekend.  4. With so many different issues going on in her body, there is a possibility that she will need to be delivered soon and didn't want to wait until June 6 to get me established with the doctors at UVA.
      Yesterday they did an ultrasound and monitored her heartbeat for 24 hours. Now they are monitoring her heartbeat twice a day and doing other things as they see necessary. I know that I will be admitted through Tuesday. Tuesday they will do some more tests, reevaluate, and decide whether to send me home on bed rest or whether to keep me. Things are kind of on a day by day (sometimes minute by minute) basis. They could decide at anytime to deliver her. Things can change quickly so they are taking it one test at time. I am so thankful to know that the Lord is in control and He holds all things in His hands.... otherwise all the ambiguity and possibilities would drive you crazy. It is a blessing to rest and trust in Him and know that there is a plan that will faithfully unfold, even if I or the doctors don't yet know what that plan is. Nothing will surprise the Lord or take Him off guard. He is the Great Physician and Great Comforter and I am His.
        I have been blessed to be able to talk to a few of my nurses about Jesus and have had two couples from a church plant here come to visit me.  Although it is EXTREMELY difficult to be away from Isaiah (much harder than I had anticipated), I know that the Lord has purposed this time.  My body needed rest and bed rest is hard to do at home. (It is hard to lay around with a two year old.)  Plus- when I have two babies at home there won't be many times when I can just be still and relax.  I can see clearly that these days are not only for monitoring Sadie, but a gift from my Father.  I am trying to use it to study and meditate on God's Word in order that He might strengthen me physically, mentally, and emotionally. The Lord has brought a passage to my heart for me to dig into, so I am excited to see what He has in store. Just pray that my heart would stay focused on Him and not how much I miss Isaiah (and Sean). Pray that I would be the fragrance of Christ to the nurses, doctors, and other patients around me. Pray that I would grow and be strengthened in this time. And obviously, pray for Sadie. Pray that I would be able to carry her as long as possible so that she can be ready for birth and whatever may come afterwards. Pray for Sean and Isaiah at home, and for my sweet mother-in-law who is there taking care of them in my absence.
        I will update the blog after the tests Tuesday and if there is anything new between now and then.  Thank you for all your prayers and love.

Trusting and Praying...

            Ok- So here is a quick rundown on the last couple of days. Yesterday I went to Roanoke so that my doctor could monitor my amniotic fluid. When I got there I found out that the amniotic fluid was actually the same level as it was last Tuesday. But Sadie's kidney had grown a centimeter in a week. It will have to be removed  or drained soon after birth.  But right now it is beginning to threaten to her other organs.  The perinatologist was very concerned that fluid was building around her heart because of the size of the kidney. So she decided to give me a steroid shot to help Sadie prepare for delivery if necessary. She then sent me immediately to the cardiologist and told me to come back to her first thing in the morning. After my shot I went to the cardiologist and he did a very thorough echo of her heart. He didn't think the fluid around her heart was getting much worse and didn't think that it would be necessary to deliver immediately due to her heart. However he was able to diagnose the aortic coarctation that they hadn't been able to see clearly before. Unfortunately the coarctation is pretty severe. It looks as though she will have to have open heart bypass surgery within the first week after birth.
             This morning my friend Elzeline went with me to Roanoke. The ultrasound showed that the amniotic fluid had dropped significantly since yesterday, almost by half. If it drops anymore they will have to either hospitalize me to try to stabilize the fluid or they will have to deliver. Also they saw that her kidney is pushing on her diaphragm and hindering it from moving the way that it should. So they gave me another steroid shot and put me on bedrest until tomorrow. I will go back to Roanoke again at 8am tomorrow to check my amniotic fluid. They have told me to prepare to be sent to UVA for possible delivery. However it is also possible that they will send me home on bed rest and just have me continue to go back to Roanoke everyday to be monitored. At this point it is just a day by day situation. They obviously want me to be able to carry her as long as possible because of the surgeries she will need. But if her kidney begins to do significant damage or the amniotic fluid continues to drop they will have no choice but to deliver. I am now at 29 weeks, which would mean she would be 11 weeks early. If they decide not to admit me or deliver in the next few days, I have all day appointments set up at UVA on June 6. So, if I make it until then, that will be my initial visit and when UVA will begin to take over care of me and Sadie.
         We are confident that Sadie is securely in the Lord's hands and trust Him completely. Emotionally and spiritually we feel steady and strong. The physical part is the hardest for me right now. I am not the kind of girl that is good with bed rest. It is hard for me to lay around and moving around is getting harder. My belly has actually gotten  a little smaller due to the drop in amniotic fluid but it is more uncomfortable. Isaiah has been so sweet. Whenever I try to get off the bed or couch he will pat the pillow and make me lay back down. He will also come up and kiss my belly. He is taking good care of his mommy :o) We are so thankful to have church family and neighbors that are willing to do anything I need and offer without us having to ask. One of my neighbors came over to check on me today while Sean was at work and did my dishes :o). I am blessed.
       Continue to pray for Sadie and for wisdom for the doctors. I will try to update as much as possible. If we aren't able to update the blog we will contact a few people that will be responsible for sending out mass emails to our family and church family. Thank you for all your prayers, love, and support!
     

How sweet is the Lord's kindness toward us!

I am continuously in awe of the Lord and His hand in my life. It amazes me how He knows my weaknesses and is so patient and loving in the midst of them. Thursday was a stressful day. I had a doctors appointment in the morning with my regular OB. It was the one where they test you for gestational diabetes and you have to drink that icky stuff... which is even more icky for someone who doesn't intake white sugar on a regular basis. About an hour after drinking the stuff I had a sugar crash and yawned my way through the rest of the visit. I was so ready to take a nap, but had errands to run after the doctor. I got several of them done, but the most important was to register a car at the DMV. As I finally got up to the lady in line, I realized that I forgot to have Sean sign the title :( . No big deal, at least I hadn't waited for a long time. I finally get home and was exhausted. Isaiah was napping, so I planned on eating something and taking a nap myself. While I was eating lunch the specialist in Roanoke called to let me know they had set up an appointment for me to go to Duke this week. The only problem was that with my insurance I needed to stay in Virginia for the best coverage. Long story short, I ended up spending the next THREE HOURS on the  phone calling insurance companies, the financial department at Duke, the nurses at Duke, my doctor. Back and forth, back and forth.... FRUSTRATION! I finally ended up crying on the phone (like a little weeny) and a sweet receptionist at Duke had pity on me and got me the information I needed. Which was that I couldn't go to Duke. This didn't seem to be a problem considering UVA is the same caliber hospital as Duke and my doctor feels confident in the staff and surgeons at both.... Except the secretary at my doctors office was offended that she had made an appointment at Duke and was going to have to change it. She made it clear that she was not happy about it. I got off the phone and just cried,  thinking, "Doesn't she know how difficult this is, couldn't she have a little bit of mercy?  Wasn't it her job to make all those phone calls anyway?"  As soon as all the phone calls were done, Isaiah woke up. I was so exhausted, so I cried some more.
        I was suppose to have tea with someone that day and decided to call and cancel before I got Isaiah out of bed. She and her family moved here less than a year ago and had recently bought some land about 6 miles from us (which is closer to us than anyone else we go to church with, since we live out in the boondocks). She has a daughter Isaiah's age,  a 4 year old son, and is pregnant with a little girl... due a couple months after Sadie. I have been wanting to get together with her to get to know her better for awhile, but days have turned into weeks and we haven't gotten together. I felt bad calling to cancel, but I really didn't want to get a full blown version of my ickyness the first time we hung out. So, I called to cancel. She understood and began to say that another woman at our church had just told her about Sadie's condition. She had recently missed several weeks of church and was unaware of everything that has been going on. I gave her a very short version of the situation and of God's faithfulness. She began to say how much it blessed her to see the joy the Lord has given us because her sister, who is her hero, has Turner Syndrome and is coming here to visit in July.  She went on to tell me that her sister, who is now 35, has been a missionary to Uganda and Israel. Though she cannot have children of her own, the Lord has blessed her with a love for children on the mission field. She can't drive and gets lost easily, but she made it through college and has the memory of an elephant. She can only focus on one thing at a time, but she is an amazing Sunday school teacher and loves the Lord with all her heart! I immediately began to praise the Lord! I had allowed the tedious events of the day stress me out. I had gotten wrapped up in civilian affairs and the Lord had pity on me! What an amazing blessing!!!! I don't care what Sadie looks like, I don't care if she is at the top of her class, and I don't even care if she is has health issues.... I just want her to be the Lords! I just want her to know Him and love Him and spend her life living and dying for HIM! And here the Lord sent such a great confirmation of His marvelous power! Here was a girl who has Turner's, 45x I might add, not Mosaic (which is the more severe type that Sadie has)....and has spent her life serving the Lord, not only on the mission field, but doing the jobs that most people don't want to do, the dirty jobs that have little reward from man, but those that store up treasure in heaven! That is the kind of woman I want Sadie to be! Not that she has to be an overseas missionary, but I just want her whole heart and mind and soul to be devoted to the Lord. Again- I began to cry.. but this time tears of joy at the sweet lovingkindness of my Savior. How faithful He is. How tender and merciful He is. I stand in awe of Him.  I have gone through trials without Him and experienced the darkness and hopelessness of it... how different it is to be the Lord's! He cares for our every need, we are never alone or without hope! I am so grateful to be His.
BTW- I have a doctor's appointment tomorrow morning in Roanoke with the perinatolgist to check the level of my amniotic fluid. We are praying that it would not go low enough for me to have to be hospitalized for the rest of my pregnancy... but we are trusting the Lord to work everything out it that does happen. Please be praying for us in this matter.  Thanks!

What an honor it is to be the daughter of the Living God

     "I will give thanks to the Lord with my whole heart; I will recount all your wonderful deeds." Psalm 9:1

         I am steadily amazed at the Hand of the Lord. It awes me to see how intricately involved He is in every aspect of my life... What a thoughtful, kind, and loving Father He is and at the same time the Sovereign, Holy King of all eternity.  It is more than my mind can comprehend, and I love that. In my daily routines of wanting everything in order and in place, I am so grateful that He cannot be grasped. Though you can learn more of Him as you walk this life, you will never comprehend Him in His fullness until you see Him face to face. His will is full of surprises and blessings and it rests on His promises to those who are His.
        Yesterday I woke up with sinus congestion and a sore throat. As the morning went on, I decided to call the friend that was suppose to ride with me to Roanoke and tell her I thought it would be best if I went alone. I honestly just didn't feel like talking... not that I was emotionally down in anyway, it simply hurt my throat. Isaiah has had the crud too, so a couple hours in the car by myself sounded relaxing. She was exhausted so it ended up being a blessing to her as well.
           Our car is in the shop so I had borrowed a friend's car. When I got in, she had an old school Christian artist in the cd player. It immediately made me smile and I sang my heart out the whole way there...(my heart, not my voice!)  I got to my first appointment a few minutes early so I started going through the mail I had grabbed on my way out the door.  As I opened the mail, the Lord had sent such an encouragement and gift to me that only He could give. It was of such a personal nature that only the Lord could have known or moved in such a way and it touched on so many different levels in my life. Again- I continuously stand in awe of the Lord. I sat in my car crying my eyes out and overwhelmed by the Lord's kindness, grace, and goodness to me. Before I ever even stepped foot in the first doctor's office the Lord had set my heart and eyes so completely on Him. He had wrapped His arms so tightly around me and I am not sure my feet ever touched the ground as I stepped out of that car. I am His daughter, what an  honor!!!
        The first visit with was with the pediatric cardiologist. The aortic stenosis isn't severe enough to be of much concern. However there was a small amount of fluid around Sadie's heart which was not there a month ago. It wasn't enough fluid to be of a huge concern in of itself, but because it is a new issue that has developed, it will need to be monitored.  The aortic coarctation, common to Turner's, is of the most concern.  It is difficult to diagnose before birth, but after birth it can go from minor to serious very quickly. Because of this my cardiologist feels confident that I should deliver at UVA or Duke. This was honestly an encouragement to me because Sean and I have both been feeling led in that direction. We want to take every precaution necessary. If Sadie does need immediate surgery, I would hate to deliver in Roanoke and then have her taken 3 hours away from me while I was still in the hospital. And... if time is of the essence, we don't want to take any chances of her having to be moved to a place where she can receive the surgeries she may need. I left the cardiologist feeling confident that the Lord had been leading us in the right direction and was giving us confirmation.
        Next I went to the perinatolgist. Normally they take me right in, but this time I had to wait for an hour and a half. There was a young girl that was pregnant with a baby with chromosome issues and had miscarried half way through her pregnancy. The nurses were so apologetic for my wait, but as soon as I was told the reason, I didn't mind the wait. As I sat there,  I could feel Sadie moving around and was grateful. I was reminded that it could have been me, yet the Lord had had mercy on me.
      From the ultrasound, we discovered that Sadie's kidney, which was already taking up half her abdomen,  had almost doubled in size from the last visit. Part of that is simply due to the fact that as Sadie gets bigger, so will her kidney... So it wasn't as alarming as it may sound, but is obviously still an issue. Because it is still growing, it will more than likely have to be removed fairly soon after birth. Another issue of concern was my amniotic fluid. This is something that they have been monitoring, but up until this point has been completely normal. However from my last visit my amniotic fluid had dropped by nearly half. If it continues to drop, I will have to deliver early. Therefore the perinatologist wants to begin to monitor me more closely. I have an appointment to go back to see her next week and she is also going to get the ball rolling with the staff at UVA. She is going to set up an initial appointment so that I can go meet the staff and so that they can examine me and Sadie. From there, the doctors at UVA will decide to what degree they want to take over care.  It is possible that they would want to take over completely or they may see fit to allow me to continue to go to Roanoke to be monitored until time of delivery.  The details of how all this will unfold are still in the Lord's Hands.  These are all questions that I can't yet answer. There are many variables in the eyes of man, but the Lord has set my path firmly in His will. I will let you know when my UVA appointment will be as well as update the blog with any other information that I may get along the way. Since I will begin going to the doctor on a weekly basis, I will also begin updating the blog on a weekly basis. Just know that Sean and I are still at peace and trusting in the Lord. We are not anxious or worried in anyway about how things will unfold. There is no safer place than in His will.

(P.S. For those that have been praying for the mother of the unborn Turner's baby, continue to pray. Sean has spoken repeatedly with his coworker. However we have discovered is is one of those situations where it is a "friend of a friend". So we aren't sure that the woman has received or will receive our contact information. We continue to pray knowing that the Lord is in control.)

"Therefore, brothers, since we have confidence to enter the holy places by the blood of Jesus, by the new and living way that he opened for us through the curtain, that is through his flesh, and since we have a great priest over the house of God, let us draw near with a true heart in full assurance of faith, with our hearts sprinkled clean from an evil conscience and our bodies washed with pure water.  Let us hold fast the confession of our hope without wavering, for he who promised is faithful." Hebrews 10:19-23

Praying to the Sovereign God

         I'm sorry it has been so long since I have written. The days have been filled with the madness that comes with the "nesting phase". I seem to have gotten a bad case of it this go 'round... much worse than with Isaiah. This evening I just finished painting the kitchen! I'm tellin' ya, I got it bad! As I sit typing this, lil Ms. Sadie is doing cartwheels.  She is an active little lady. Most days she wears me out before the nesting phase does! I have just entered into my 7th month (28 weeks). According to the calendar I have about 12 1/2 to go... but I feel as though I am already at the 9 month mark! I'm sure part of it is due to the fact that when pregnant with  Isaiah I was going to the gym all the time and was in much better shape..... but I think the majority of it is that I have a wild child to keep up with all day. Isaiah is non-stop but he is so much fun! When asked where "his" or mommy's baby is he raises up my shirt and pokes my belly button. (Then he raises his shirt and his daddy's shirt and pokes their belly buttons as well.) He will sweetly kiss my belly... (along with my broken toe, aka "boo boo"). I think he is going to be an amazing big brother, if he can get over not being able to have mommy and daddy all to himself.
          I have three doctors visits coming up: two on the 16th and one on the 19th. The 16th will be with the perinatologist and the cardiologist. The 19th I will be seeing my regular OB. These should be fairly "routine". But I will keep you updated on anything that I learn. Also- the Lord sent another encouragement to us. We have been asked to be a part of a research study involving Turner Syndrome. Only 5% of girls with  45x, the more severe form of Turner's Syndrome survive past the first trimester. (5%!!! How gracious is our Lord to allow us to be in that 5%!) But because of this, there are few cases to research. Sadie's case is particularly rare because of her cystic kidney. Many girls have kidney issues, but not many have a cystic kidney. The tests that they will do are not invasive and the study is only a short drive from where we live. The blessing in this for us is that the doctor that we will be working with, works only with Turner's girls. Therefore she has a lot of experience and knowledge to share. She is very informed and has already been a wonderful resource for us.  We are going into this very prayerfully and ask you to pray for us as well.
         On a more serious note, yesterday Sean came home from work with a heartbreaking story to tell. A girl that he works with told him of a woman she knew that had just found out that the baby she was pregnant with had Turner Syndrome. The woman is 15 weeks along and is planning to abort the child. Of course Sean and I were both crushed. Sean asked his coworker to please give the woman our contact information in hopes that she would consider carrying the child and then letting us adopt her. Our church is full of families who adopt and are so supportive. It may even be possible that someone else in our church would want to adopt her. But if not, we would take her in and love her as our own.  I do realize that some of you are thinking, "how on earth could they handle two babies with special needs?" His grace is sufficient, period.  If it meant that little girl would have a chance to live, it would be worth it. There are no coincidences with the Lord. I had never even heard of Turner's before Sadie. And "it just so happened (?)" that this woman is an acquaintance of Sean's coworker who is aware of Sadie's condition, otherwise she probably would have never shared this information with Sean.  We know one thing for sure, we are called to pray for this woman and this baby. It seems that she has already made up her mind, but we are praying that the Lord will change it. I am so thankful to trust in the sovereignty of God and know that He is able to do more than we can ask or imagine. So please pray with us! Pray for this mother and her unborn child! Pray that the Lord would intervene and change her heart! Pray that she would decide to not abort this child and either keep her and love her with all her heart or be willing to let someone else have the chance to love her. I already feel a love for this little girl and my heart breaks at the thought that she may never be given a chance to live. What a gift children are! Please pray... cry out to the Lord on her behalf.

...for the Lord has dealt bountifully with you...

 "Gracious is the Lord, and righteous; our God is merciful.  The Lord preserves the simple (me); when I was brought low, he saved me. Return, O my soul, to your rest; for the Lord has dealt bountifully with you. For you have delivered my soul from death, my eyes from tears, my feet from stumbling; I will walk before the Lord in the land of the living. I belived, even when I spoke, 'I am greatly afflicted.'"

I want to fill these pages with Psalms of praise and thanksgiving!!! My heart is so full!!! The Lord has indeed dealt bountifully with us. Three weeks ago we were told that, more than likely, we would never come home with a baby. On more than one occasion we were given the option of terminating the pregnancy, because the chances of Sadie living were slim to none. In three weeks, the Lord has heard the cries of His people and answered! Today there was no reason that the doctors could see that Sadie would not only be able to make it to birth but be able to survive on her own, outside my body. The chances of me even going into premature labor are very slim. At 24 weeks, Sadie is measuring 25 1/2 weeks. She is a good weight and size and her heart beat is strong. Her heart is the size it should be and all 4 chambers of her heart are in tact. Her stomach was COMPLETELY normal! The larger opening in the back of her brain measured just above normal, but the rest of brain was completely developed and normal. So, this "space" is no longer a concern or threat. The only two issues of concern are her heart and kidney, but even those at this point are not considered "lethal" as they were three weeks ago. We were told today that she never should have made it past the first trimester. The Lord is our Great Physician!!!

     Here is the lowdown with her heart and kidney: There is still possibly a small hole in her ventricle wall, so small, in fact,  that they aren't even sure it is a hole. She does have aortic stenosis, which will have to continue to be monitored to determine it's severity at birth. There is another condition that is common with Turner Syndrome called  coarctation of the aorta. The doctors have not yet determined whether or not Sadie has this condition.  If they find that she does, it would require surgery within the first few weeks of life.  This is another thing that the pediatric cardiologist will continue to monitor throughout the remainder of my pregnancy, along with the aortic stenosis. Sadie's right kidney is larger than it was 3 weeks ago. At this point, it is so full of fluid-filled cysts that it is taking up half of her abdomen. As she grows, this kidney could begin to put pressure on other organs. Also- when she is born and begins to breath on her own, it is possible that her lungs may not have room to expand because of the size of the kidney. Therefore,  they may need to remove her right kidney within the first couple weeks of life. There is also a possibility that the kidney would grow to a point that it actually retracts on its own and won't require surgery. Either way, her left kidney is strong and she can live with only one kidney. In conclusion, she may need surgery on her heart and/or her kidney (or neither). They will continue to closely monitor Sadie over the next few months. I will hopefully be able to deliver in Roanoke. There is still the possibility of delivering at Duke or UVA depending on what surgery or care she may need after birth.... But the point in all this is that I will be delivering a living baby girl named Sadie Robin Johnson!!!!  (Obviously we are aware that there are always  risks and there is always a chance of something going wrong... for all you skeptics out there)... but THE LORD HAS HEARD OUR CRIES AND ANSWERED!!!!  He has not let our feet stumble. He is faithful and merciful to His children!
We are in awe of our Father. He is the Sovereign Creator and we bow humbly at His majestic and beautiful feet! I can't even express to you how overwhelmed we are with the Lord's kindness to us! Sean and I both cried so much more today than we did 3 weeks ago, but they were all tears of joy!! Who am I that that He would be mindful of me!
         Oh, you who do not know this awesome God... Cry out to Him, for He hears our cries and He will answer! Call upon the Name of the Lord for salvation!  For those that are His children and are in the midst of a trial, do not question the power of the Lord, rest in Him, even in the midst of the storm. Find comfort in His Word. He will never leave or forsake His children. His Word is true. Again- I could fill these pages with Psalms of praise and thanksgiving... or I can point you to the Author of Life and to His Word. Go there and find Him. How awesome is the Lord our God!

         
"I love the Lord, because He has heard my voice and my pleas for mercy. Because he inclined His ear to me, therefore I will call on Him as long I live." Psalm 116:1-2

"Not to us, O Lord, not to us, but to your Name give glory, for the sake of your steadfast love and your faithfulness!" Psalm 115:1

April 20, 2011

        I just wanted to let everyone know that tomorrow (Thursday 4/21) is a big doctor day in Roanoke. I am now officially past the 24 week mark (6 months pregnant), which means that Sadie is mostly developed and will now begin to grow more rapidly. They wanted to wait until this point to continue monitoring her because now they will have a better idea of how her organs and body are developing.  I have a 9am appointment with the pediatric cardiologist and a 10:30 appointment with the perinatologist. Both of these appointments will be a lot of ultrasounding. The cardiologist is hoping to get a clearer view of the areas of concern in Sadie's heart so they might be able to get a better grasp on issues other than aortic stenosis and their severity. The perinatogist will be ultrasounding to measure her growth as well as see how she has developed over the last three weeks.   She will be taking a closer look at all areas of concern.  After my ultrasound with the perinatologist I will meet with the Genetic Counselor to have an in depth conversation about Turner Syndrome, as well as Sadie's particular case of Turner's.
         Please pray that lil' Ms.Sadie will cooperate and let them see what they need to see in order to determine how to continue with care for her. Pray for energy for me as all the hours of ultrasounding can be an exhausting task, as well as energy and strength for my sweet friend who will be going with me.  Pray that we would be the fragrance of Christ to the medical staff and all we come in contact with. Pray for steadfastness in my spirit and the continued blessed peace of Christ. Also- pray for Sean, as he won't be able to go with me because he has to work. And of course we pray that if it be God's will, that he would heal Sadie's little body. However we truly desire for the outcome that will glorify Him most, even if that means that He does not heal her.
         Again- we love her so dearly and know that she is being perfectly knitted together according to the Lord's will. We don't desire to have a perfectly healthy baby or even to go through life without trials. We desire that He would be glorified in and through us and that we would be made to look more like Christ in the midst of it all. We pray that we would persevere and that others would see the reality of Christ, that He is not just some "religion".   He is the Truth, not just a chose that is "good for us, but not for everyone". He is the one and only true God.  He is the only Hope for every person. He is the only place in which to find peace and rest and salvation.
          I thought I would share with you a song that has been such an encouragement to me on this journey. Some days I listen to it over and over. A sweet friend bought me this cd for an early birthday present, and I have treasured it.  It is by Keith and Kristen Getty.

Jesus draw me ever nearer
As I labour through the storm.
You have called me to this passage,
and I'll follow, though I'm worn.

May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart's testing,
With Your likeness let me wake.

Jesus guide me through the tempest;
Keep my spirit staid and sure.
When the midnight meets the morning,
Let me love You even more.

            Let the treasures of the trial                                 
Form within me as I go -
And at the end of this long passage,
Let me leave them at Your throne.

Philippians 1

"Yes, and I will rejoice, for I know that through your prayers and the help of the Spirit of Jesus Christ this will turn out for my deliverance, as it is my eager expectation and hope that I will not be ashamed in anything, but that with full courage now as always Christ will be honored in my body, whether by life or by death."
Philippians 1: 19-20

The Potter's Wheel (Will)

As I prayed for Sadie this morning, I felt strength in the Lord. Sadie is being fearfully and wonderfully made. I know that there is no “defect” in her. She is being made exactly as her Creator would have her to be. And so am I. I feel as though I am on the Potter’s wheel, being shaped and molded into an instrument usable for His purposes and His glory.  A couple days before we got the results from the amniocentesis, I was waiting for the phone call from the doctor. There was a possibility of getting some preliminary results a few days before the full results came in. That day when the phone rang, the doctor was calling to say that the preliminary results were “inconclusive”. I would just have to wait another week for the full results (which came in much earlier than expected, in fact… 2 days later). I was also expecting a package in the mail from my aunt, and it didn’t come. I found that the wind had been taken out of my sails and I just wanted to cry. At first I thought, “no, I can’t cry… I have to be strong”. Then the Lord reminded me of that day at the doctor the week before when He had beckoned me to Himself and encouraged me to jump headlong into His will with no fear. I was reminded that I did not have to fear raw vulnerability with the Lord. He was trustworthy. I could trust Him with my joy and my pain. So I cried, and felt relief. Then I went downstairs with a cup and tea and sat to pray for a bit. The Lord so gently began to direct my heart, not in a disciplining kind of way, but a Father teaching His daughter. He showed me that I had been putting my hope in something as insignificant as whether or not I got mail that day. He showed me that I was not to put my hope in test results, doctors, or any other person. Even though the Lord has given me an amazing church family, an amazing support system, and an amazing husband…. I am not to put my trust into any of that. He will use others to encourage and comfort me, but even those with the best intentions will not always know exactly what to say, or exactly what I need. I don’t even know what I need most of the time. I am to put my trust only in Him. He is my Resting Place. This will be a long journey, if I put my trust in test results and procedures I will be on an emotional roller coaster and will never be able to persevere with joy. If I put my trust in other people, I put expectations on them that they can never live up to, because they are not God. But there is One that I can dive into, free-falling, trusting whole-heartedly without regard to the circumstances around me and I can be confident that I am safe in His Hands. I will rest on the Potters wheel, the Potter’s will…. As He shapes and molds me… just as He shapes and molds the little girl growing inside my womb. We are both safe and being made into exactly what He would have us to be.

The Story...

  On Thanksgiving morning 2010, Sean and I found out that the Lord had blessed us with another baby.  We have been so excited ever since! On March 15, 2011 we found out that we were having a little girl. We already had her name picked out, Sadie Robin. Sadie after Sean's maternal grandmother and Robin after my maternal grandmother. Sadie is a name that I have always loved, so when I found out that was Sean's grandmother's name, my heart was set. Sean cried the minute he found out we were having a girl, and I was petrified! :o) What on earth was I going to do if she was as hard-headed as me?! But honestly, I couldn't wait either, I immediately began searching out little hippie dresses for my little lady.

          I had another ultrasound scheduled for March 25. During this ultrasound, the tech found some things that seemed alarming.  However he wasn't able to tell us what exactly it was and with it being a Friday afternoon, we would have to wait until Monday to find out. On Monday, my doctor wasn't in, but she called first thing Tuesday morning when she saw my ultrasound. She said there were several things that were going on, but she wasn't sure what was the cause. It was possibly Down's Syndrome, but she wasn't sure. She immediately put in a referral for a perinatologist in Roanoke. On Wednesday the specialist in Roanoke called and set up an appointment for first thing Thursday morning.

             There were so many things that the Lord did that day. Here are a few before the appointment ever started. First, that was Sean's only day off that week. Second, at such short notice couldn't find a babysitter...which sounds like bad news, but I left the house at 6am and didn't get home until 8pm. If we had a babysitter there is no way that I would have been able to get all the testing done in one day and the process would have been drawn out. As it was, a sweet and dear friend went with me while Sean stayed home with Isaiah. I was the first patient seen that day. All in all I was on a table having  ultrasounds for a total of about 5 hours. (Needless to say, my belly was sore the next day!) After the first ultrasound, the perinatologist came in and looked around some more. I was so thankful when she said, "I am going to be very honest with you, there are no secrets here." Honestly, that is exactly what I wanted and needed.  She continued to tell me that they did not think it to be Down's. Sadie had other things going on that may be much more severe. There was a space in the back of her brain that was slightly larger than it should have been. Her neck was much thicker than normal. Her stomach seemed to be two chambers rather than one and there was a possibility of a blockage to her stomach because she wasn't getting enough fluid. One of her kidneys was so full of cysts that you couldn't see it on the ultrasound and it was unable to function. Most alarming though was her heart. They couldn't find the arteries going to her brain or her stomach and they also couldn't find the dividing wall in the upper two chambers. They needed to do an amniocentesis to try and find the cause of all these things.

             After talking with a genetic counselor and a quick bite of lunch, I was taken in for the amnio (which was surprisingly quite painless). After the amnio we had about 2 hours before the next appointment. Thankfully, the waiting room was huge and had nice big comfy couches. We were able to hide behind a wall and lay down to rest for a bit. Our last appointment for the day was with a pediatric cardiologist.
There they did a thorough ultrasound of Sadie’s heart. They weren’t able to see everything they needed to, however they were able to see the arteries and dividing wall that the other ultrasounds didn’t show. He did find that Sadie has aortic stenosis which is a thickening of the aortic valve. This may need surgery or may not need any treatment depending on it’s severity at birth. They will be closely monitoring Sadie’s heart for the remainder of the pregnancy to determine exactly what is wrong and what she will need after she is born.

            The most important part of the day was the Lord. Sean and I had such a peace from the Lord from the very beginning. Even after the initial ultrasound the week prior, we were completely at peace. In fact, at first I expected to be upset and distraught, but instead I was flooded with peace. When we thought that we were looking at Down’s Syndrome, we felt honored. If the Lord created one of his children that needed extra care and love, we were honored that He would choose us to give that love and care. We had no desire to get an amniocentesis.  We were excited to have our daughter regardless of how the Lord created her…. And that is still how we feel.
            That day in Roanoke as my friend and I waited in the waiting room for the amniocentesis we prayed. I was so flooded with the peace of the Lord. I felt as though He was beckoning me to jump freely into His will without any fear. No fear of the journey and no fear of the outcome. No fear of being vulnerable. He is trustworthy. He doesn’t make mistakes and He never fails. All things are for my good and His glory. He truly means that. I don’t have to act strong, it is ok to hurt, He is the perfect Comforter. I am His. He is mine. He is my resting place, my hiding place, my strong tower, the firm foundation on which I stand. He is truly my all in all. I am free to be excited about being pregnant. I am free to joy in having a daughter. I don’t have to fear the thought of looking into her face and holding her. I am not setting myself up for disappointment. I walk, knowing the what-ifs, knowing the possibilities, and I can continue to praise the Lord that He has blessed me with this child. Even if we lose her, I can still be grateful to have a daughter named Sadie Robin. She is His. Regardless of how long she is in my care, she is always in His. Those times when I have cried out to the Lord and asked Him to let me hold her just once, He has assured me that she is in His hands, even now, and they are much stronger than mine.

          On Thursday April 7, we got a call from the doctor with the results of the amniocentesis. They found that Sadie has a very severe form of Turner's Syndrome. This means that she is completely missing one of her sex chromosomes.  There is a type of Turner's called Mosaic Turners which is a much milder form that what Sadie has. There is a link on the blog to a website if you want to learn more about Turner's. I won't go into all the details right now. But a few things to note are that this is not an inherited condition. Therefore, it will not likely affect any future pregnancies. Second, most Turner's cases miscarry in the first trimester, especially cases as severe as Sadie's. Turner's is not a mental disability like Down's or a physical handicap like Cerebral palsy.  There are normally issues with growth and she is more likely to have auto-immune diseases and thyroid issues as she gets older.
         The doctors concern at this point is still the same.  It is possible that she may not make it to birth or be able to survive the needed procedures. Their main focus right now is her heart. They will continue to monitor her very closely. I will be going to the doctor a lot, which is fine with me. I love to be able to see her on the ultrasound and hear her heartbeat. I will be delivering her in either Roanoke or possibly Duke or UVA, depending on what she needs at birth. As of now,  her weight is in the normal range and even with all the heart issues, her heartbeat is very strong.

     
              I have honestly prayed that others would not take my peace for denial or for a cold unfeeling heart. Those who do not know Christ and have never experienced His love, won’t be able to understand the peace, joy, and even excitement I have. I realize that this is going to be a painful and long journey. I am not ignorant to the fact that there will be days of crying and not wanting to get out of bed. But I also believe with all that is in me that through this journey I will know and love Jesus more and that this is all part of his plan to make me look more like Him. That is the goal of my life, that is why I breathe. How could I not be excited! How could I not trust Him when He has poured out His life, so that I may live. This is living! Living is not just the times of ease, living is the trials. Living is not just the joy, but living is the pain. But living your life hidden in Christ means that there does not need to be fear regardless of what this journey holds. And I have the promise that at the end of this journey I will look Christ full in His face, in all His glory and will spend eternity worshipping  Him… knowing that HE IS GOOD. Not because my life was easy, but because He is God.  OH JOY IN HIM! PRAISE MY REDEEMER! Without Him this story would be much different, I would be in despair, but my life has been bought with a price. Now I rest in the Hands of the Almighty Creator and there I will stay.