Thursday, August 30, 2007

Doctor's appt.

This morning at 10:00 am was our doctor's appt. back with our regular doctor, this is the 1st time we have seen him since we received the Trisomy 18 results from the "high-risk" doctors on August 15th. We heard Tristan's heart beat and it was still going strong at 150. We had so many questions for the doctor regarding Tristan's birth, delivery, life-saving decisions and where we needed to go from here. He said he would like us to continue seeing him every 2-3 weeks to have sonograms so that we can continue to watch Tristan's growth process. I believe it will help dull the pain we are so caught up in right now if we can actually see Tristan growing and moving and kicking just like he's a normal baby. Our last question and concern to the doctor was, because we do not have medical insurance, we are self-pay and have only paid half of the $5,000 that is due to the doctor's office for their services, which has to be paid by Sept. 27th, is there any way they can give us a little more time to pay it? Because of Tristan's condition we are now faced with the expenses we will incur between the hospital delivery, neonatal expenses, hospice, funeral home, cemetery plot, etc. therefore we are beginning to feel financially overwhelmed. As I had written back on August 15th, we have spent the last 7 years getting completely out of debt and living on a "cash-only" basis, so the idea of bills/debts piling up again really scares both of us. Our doctor was very sweet and said, "don't worry about it, we'll figure something out, you just take care of the necessary plans for your baby". Please pray that Tristan will continue to grow and develop, that the doctor's office will be willing to work with us on the remaining balance of our bill and that we will not be overwhelmed by everything we are facing financially.

Friday, August 24, 2007

Our new home

Today is filled with mixed emotions, we are so excited and at the same time, still very sad. We closed on our new home this morning, something we've been waiting for since last year, and we started moving in. What has really made it hard is that we did NOT expect to be moving in without setting up Tristan's nursery. We already had his bedroom and room decor picked out so we have had to make some last minute room adjustments. We now have Tayden in what was going to be Tristan's room, Tanner in what was going to be Tayden's room and the bedroom downstairs, which was going to be Tanner's, is now a den/playroom. We didn't want ANY empty rooms which would represent the loss/absence of Tristan in the future. We left all the baby furniture, bassinet, toys, clothes, etc. at my grandparent's house until we are able to emotionally make any kind of decisions about them. This might all seem as though we have given up on Tristan or that we do not believe the Lord may chose to heal him, let me assure you that is not the case, we have not given up hope, yet at the same time we feel as though we need to prepare for what we know from the amnio results. We are really hoping that Trayc will have to go get the bassinet and baby clothes because that would mean we are bringing Tristan home from the hospital - what a miracle that would be! Trayc has taken off work for the next 10 days so that we can move in, get unpacked, decorate and get settled in. His time off was planned well before we knew about Tristan having Trisomy 18, so his time off has changed somewhat, we are no longer on the "10 day crunch, have to work day and night to get the priority list done" as we were originally planning on. Oh sure, we're going to get things done but we really need this time for us as a family to be together, so that we can share our thoughts, cry our tears, talk about our fears and try to start healing. Please pray that we will ALLOW ourselves to be excited about our new home, that the next 10 days we will grow closer to each other, that we will begin healing from the pain we are feeling and that we will draw closer to the Lord.

Thursday, August 23, 2007

It is FULL Trisomy 18

The nurse from the "high-risk" doctor's office called Trayc at 12:00 noon and said that she had just received the official report from the lab regarding Tristan. She said that it is FULL Trisomy 18, which means it affects every one of his little cells. We are really no more devastated today than we were on August 15th. Trayc was holding out hope that it would be mosaic and that we could possibly have Tristan with us for several years or maybe well into his 20's but there was just something inside of me saying it was full Trisomy 18 or maybe it was my head preparing my heart ahead of time so that the news wouldn't be any harder to accept than it was originally. Although Trayc and I do not know why this is happening, we do know that the Lord is in control, that there is a reason for this being full trisomy and not mosaic and that we will love Tristan every minute we have him with us whether it be one day or one year.

Wednesday, August 22, 2007

7 days of suffering

The past 7 days have been so difficult as our hearts are deeply saddened by knowing that our precious baby boy's life will not be all we had hoped it to be. I think when you find out you're pregnant it's natural to start thinking about who will they look like? what color will their hair be? (always my mom's first question after any of her grandchildren are born - she has natural bright red hair, so all she wants is red-headed grandchildren!), what will their personality be like?, what will they grow up to become? and yet we are not able to think like this anymore! Our thoughts have shifted greatly to, will he be the 50% that DOES make it to full-term? will he survive the delivery? will he be born alive? will he live a day, a week, a month or will he be in the less than 10% that actually DOES live to see his first birthday? what life-saving measures do we want to use if he's born alive? and the hardest of all - how do we plan the funeral of our unborn baby who is still very much alive and who kicks all the time? There are no words that anyone can say to take this pain away, however, the love, support and encouragement we have received over the past 7 days has been incredible. I know we all get so busy in our hectic lives with home, jobs, kids and extra-curricular activities, but I can tell you that we appreciate, more than I can say, the people who have STOPPED and made the phone calls, send the emails and written the cards. There have been several days that all I have been able to do is get from the bed to the couch and just sit and cry, then Trayc will bring me the mail and there's a card! This is what we have needed this past week more than anything, just love, support and encouragement from family and friends. Please continue to pray for us during this time of suffering.

Job 2:13 says: "Then Job's friends sat on the ground with him for seven days and seven nights. No one said a word to him, because they saw how great his suffering was."

Tuesday, August 21, 2007

The friend who called

The past few days have been so hard on all of us and my emotions are just up and down. The people who know me well know that I am a happy, upbeat, outgoing girl who loves the Lord, who loves her family and loves to live life to it's fullest! However, I do not feel like that anymore. Honestly, I am so caught up in my emotions that I don't feel like I have the strength to get through this and I'm scared, scared of what the future now holds for our baby boy and for our family. I've been fortunate enough to never have any kind of tragedy in my life and only the loss of my grandfather in 1993 (which is still very hard for me to accept), so how will I ever survive the loss of our baby? Will I ever laugh and smile again? Will I always be this lonely and down? Will this just tear me apart completely? and Will the wonderful life I had before August 15th ever return? I felt like this until the phone rang and a sweet girl from our church called at 4:00 pm. What's neat is that she wasn't a real close friend or even someone I've ever gone out and done things with, she is just a sweet girl, our families have known each other for years, our moms are good friends, my mom was there for her during her pregnancy and birth of her daughter. She and her husband have a little girl with Down Syndrome and although the prognosis/outcome of Trisomy 21 is certainly different than that of Trisomy 18, their little girl had a lot more problems than just Downs which caused them to be in the same place that we are in right now, both emotionally and in the planning of her funeral because they did not expect her to live. However, she did live and she is just adorable! What a miracle baby they have and the Lord is continuing to bless them in so many ways including helping couples like us! Back to my telephone conversation with her, she said that she didn't want to impose but that if I ever needed to talk she could certainly relate. I said, "actually, I have been sitting here on the couch crying all day and counting the hours until Trayc comes home at 5:00 pm so I'd love to talk." Our conversation lasted for 1 1/2 hours. I explained that I had loved being pregnant, watching my stomach grow, buying and wearing maternity clothes and feeling our baby kick - UNTIL NOW, I don't want to be pregnant and watch my stomach grow, I don't want to feel him kick, I don't want to wear maternity clothes because it is all a reminder of what is to come, the loss of our baby boy, and I'm scared! She said that these were all very normal feelings, that I will make it through this, that I will love life again and that as times goes by I would start feeling normal again, that I would have the strength to go on and that this would not just tear me apart completely to the point that I am not that same girl I was before August 15th. I don't know, there was just something about talking to her that was more comforting than I can even describe. I didn't feel like I was crazy for feeling these things. After we talked I got dressed and when Trayc walked in the door I said, "hey, let's go out to eat!" He said, "okay, are you sure?" I said, "yes", he said, "who did you talk to that made you feel like this?" and I told him about the phone call. Amazing isn't it how the Lord uses people in our lives, and not just the friends we are the closest to, to help us feel like we are not alone and that can comfort us right where we are! Please pray that I will begin to feel like myself again, that I will regain the strength I have always had and not just continue to wallow in my sorrow because even though Tristan's future is uncertain, what is certain is that I am still a wife (to a wonderful husband), a mom to 2 other precious boys, a home-school teacher to Tanner, Tanner's chauffeur to/from soccer and piano, a S.S. class member and a faithful church member. Therefore, I know my life and my responsibilities have to go on.

Saturday, August 18, 2007

Wild and silly but just what we need!

The past 4 days have been extremely hard for our family! The shock and realization that Tristan's genetic disorder is considered "incompatible with life" is just overwhelming us. We knew with me being almost 40 yrs old that there was a chance of having a baby with a genetic disorder like Trisomy 21 (Down Syndrome) but Trayc and I had agreed that we would be okay with that because that would mean that the Lord chose us to have a special-needs child, however, we did not know about Trisomy 18 (Edward's Syndrome). Would we have still tried? Absolutely! We have never been the ones in control of our children's health so why would this be any different? We have all longed for Tristan since April and now we are grieving because of the inevitable loss we will be facing in the near future. We had all been sitting on the couch talking and crying and then we went to the kitchen to eat dinner. After we prayed, Tayden, our 1 1/2 yr. old, pulls his shirt over his head so that it is resting behind his head and on his shoulders, then he puts his rubber spoon in his mouth and starts flipping it so that it's hitting his forehead and then he puts both feet on the table and starts laughing. Okay, this is not the typical dinner at our house, he has honestly never done this. Infact, we would have never, ever accepted this kind of behavior when our 11 yr. old was that age because we were so strict on everything and that included table manners. I said, "oh, if Grammy(my mom) could see you now!" we all kind of smiled, and then Tanner, our 11 yr. old, said, "You know what mommy, maybe the reason the Lord waited 10 years to send us Tayden is because He knew we'd all need him right now because he's just so wild and silly!" I said, "Maybe you're right Tanner, maybe Tayden will (without even knowing it) be the one who helps us heal during this difficult time and maybe he will keep us laughing when we really don't want to."

Friday, August 17, 2007

The confirmation

This morning at 11:30 am the nurse from the "high-risk" doctor's office called Trayc and confirmed that the amnio test showed that Tristan DOES have Trisomy 18. We do not know if it is "full" (in every cell and incompatible with life), "mosaic"(in some cells, able to live up to 20 yrs old" or "translocation" (hereditary in every pregnancy hereafter) and although we will not know which it is until Thursday, we know what we need to, it is Trisomy 18. We are still in shock, have had very little sleep since Wednesday and are feeling emotionally drained and overwhelmed. We are still at a loss for words, so please just keep us in your prayers!

Wednesday, August 15, 2007

The day we feared the most

This morning at 8:15 am was my appt. with the "high-risk" doctors. As mentioned earlier, this was supposed to be a normal heart echo sonogram, however, now with the concern from my doctor and us, of Trisomy 18, the heart echo really didn't matter at that point - we had so much more to be concerned with! This time we left the boys with my parents because we did not know what to expect, good news or bad news. As I was laying on the table with the sonogram wand on my stomach I was praying, and literally begging the Lord, to allow the blood test to be wrong so that our little boy would live. As the sonographer was doing the sonogram she said everything looked really good. I said, "Does the file say we are here because there is a 1 in 10 chance that our baby has Trisomy 18?" She checked the file and said, "oh, okay". She kept doing the sonogram and then said, "to be honest, everything is measuring correctly, my only concern is that his hands are clenched (normal babies hands can be closed, however, after having a 1 hour sonogram he should have opened and closed his hands several times). I just started crying, I knew, we have done extensive research online regarding Trisomy 18 and that one factor alone, clenched hands, means Trisomy 18. The sonographer stepped out to get the doctor and when he returned he said, "okay, let's look at the hands which seem to be a concern", he said, "yes, unfortunately it does look like they are clenched", then he looked at his heart and said, "there is a very small, actually only a .4 hole in his heart, which could very easily close up prior to birth and if not, it is certainly repairable with heart surgery". He advised that we do an amnio test right then to confirm 100% that our baby had Trisomy 18. I said, "absolutely not", and then Trayc asked that we be alone for a few minutes. We talked and cried and Trayc said he knows that we have always denied amnio's because of the risk of miscarriage and because no matter the results we would never terminate our pregnancy, but at the same time we HAD TO KNOW FOR SURE what we are facing in the upcoming months. So, I agreed and the amino was done. We left the doctor's office in mere silence not knowing what to say, only to hold hands and cry. Have you ever felt so devastated and overwhelmed with emotion that the world seemed to be crashing down upon you and you just couldn't stop it? This is how I feel! I knew, laying on the table, that my life would never be the same after today and I was so scared! Sure, we've had marital and financial problems over the past 17 years of our marriage, but who hasn't?, however, both of those are basically self-inflicted: WE made the choice to let sin enter our marriage and WE made the choices to spend money outside our means, but these kind of issues are fixable - Trayc and I have lived on the mountain top for 5 years, we are more in-love today than we've ever been, we've lived everyday like it's our last, and we have managed over the past 7 years with the Lords help to get ourselves out of over $30,000 debt., but this is different, WE did not chose this, this was not a result of sin in our lives or overspending. The hardest part is that this(barring a miracle) is not fixable, and it is the most precious possession(besides our other 2 boys) we have, our unborn baby boy. Please be praying for us as the news of our unborn son, Tristan, sets in and becomes a reality for us. As we have read online, we have so much ahead of us, all of which is so unpredictable by medical science but fortunately we are not relying on medical science to get us through this, we are relying ONLY on the Lord and His will for our family no matter what that might be.

Sunday, August 5, 2007

Willing to obey God even in the tough times

This morning we emotionally struggled to make it to Sunday School and church. Although we do not know for sure if Tristan has Trisomy 18 or some other kind of genetic disorder, we do have reason from our doctor to be concerned, so our hearts are just broken. All I really wanted to do this morning was stay in bed and cry, but I knew that no matter how much I was hurting I needed to get up and go, after all, maybe the Lord had something we needed to hear today. You won't believe what our Sunday School lesson was on - Genesis 22:1-18, the story of Abraham and Isaac. God went to Abraham and asked him to sacrifice his only son on an altar. Abraham made all of the necessary preparations, took Isaac to the altar and bound him, but God stopped him and provided the ram as a substitute. The point here is, Abraham did what God asked him to, he obeyed God. Although we do not have a choice like Abraham did, we do have a choice in our obedience to God. We can either chose to willingly give Tristan to God or we can choose to fight Him, be resentful towards Him, and live in anger towards God for the rest of our lives. Like Abraham, we want to give Tristan willingly to God, we want to trust in His love and in His plan, even though we do not understand why this is happening. Abraham's trust, his faith and his obedience in God was so great! He was willing to obey God even in the tough times and even when the future was uncertain. This is exactly where we are today. We don't know what the sonogram will show on August 15th, but we do know that we will trust in God through it all. Please pray that we will have the obedience, the strength and the love for God like Abraham had. Then, verse 16-17 says: "... because you have done this thing, and have not withheld your son, in blessing I will bless you, and in multiplying I will multiply your descendants ..."

Thursday, August 2, 2007

The doctor called

At 8:30 am this morning my doctor's office called and the nurse said, "Mrs. Hostetter, we've been trying to get a hold of you for 4 days, the doctor would like to speak with you". I knew something was wrong. I mean, how often does your doctor stop and personally call you. My doctor said that he had received the quad-screen results back and that there was some concern. My ratio was 1 in 10 chances that our baby had Trisomy 18. I said, "What is Trisomy 18?" He said, "basically it means your baby would be "incompatible with life", I said, "as in die?" He said, "unfortunately yes, the statistics are that only 50% make it to delivery alive and the babies that do make it usually live somewhere between a few hours up to 4 months, but there is a 10% chance that he could live to see his first birthday". He said, "I will be honest though, because you just had a very thorough, high-tech, sonogram and it showed no signs of anything, I am wondering if this is just a false-positive test, which can very easily happen with a maternal blood test". He said he wanted me to keep the appt. that I already have scheduled with the high-risk doctors for August 15th (this is just supposed to be a heart echo sonogram) and to call him after the appt. I was absolutely devastated to say the least. I was trying to comprehend Trisomy 18, which I've never even heard of, trying to figure out how in the world will I go on living my day-to-day life knowing our baby will die, I've never been through a tragedy. I called Trayc and was just hysterical! He immediately called the doctor back and had him explain everything to him just to make sure I wasn't just hearing the "worst case scenario". I wasn't, the doctor confirmed everything I had said. Our day has been filled with making phone calls to all of our family and closest friends. I will be honest, right now, Trayc and I are in shock, we are devastated and truly at a loss for words, we can't even begin to understand how we are going to get through the next 4 months and how we are to say goodbye to our unborn son, our 3rd miracle baby! We will be doing research online tonight to find out exactly what Trisomy 18 is so that we know what to expect in the upcoming months! Please pray for us during this very difficult and uncertain time.