no greater love

how can He have a greater love for her than me? That's not meant to be sarcastic in any way. I know how much love we have for her without even meeting her, but yet He as chosen a different path than we want and loves her way more than I ever could. hard to believe. Saying that doesn't mean we have given up hope, although I am preparing myself for the outcome the doctors have predicted. If God grants us a miracle as I know He can, then oh how amazed and happy we will be. I am hopeful for that. I want to be prepared for both.

Everyday I have new questions that may never get answered. Every night I fall asleep only to turn over and wake thinking about Lexi. Before when I turned over I thought I wonder what she is doing as I roll from one side to the next. Now I wake to the doctors words playing over and over in my head. I know God works miracles and the fact that I am still carrying her this long is one in itself. With Triploidy not to be mistaken with Trisomy, I know the outcome, but I know my God is bigger than Triploidy, bigger than the doctors. Do I still cry at the possible outcome, yes. My heart breaks every second of the day. I feel so weak, so unfaithful, so unbelieving. I keep thinking wow, wouldn't it be amazing if Lexi made it to term and survives longer than minutes, hours, days, months. The doctors would have no words and God's plan would be revealed, they didn't know everything. I wouldn't even struggle in the least thinking the amnio results were mistaken. I would believe the diagnosis was there but my God chose to heal. But the reality of it is with Triploidy, babies do not make it, as in the doctor's words, it's incompatible with life.

I also know my health is at risk but yet that's not on my mind at all. Yes, I have to be monitored weekly until we deliver and I want to be sure I am safe for my 4 other babies. we'll take it week by week. My concern is Lexi. I want so badly to hold her when she is born whole and precious. Isn't that what all mothers want from the moment we find out we are expecting just to touch that sweet baby that God formed inside of us for the first time. It's the best. I constantly think about holding her with her little head against my chest late at night while she sleeps like I did with the others, how I long to have time like that with her. Maybe we will have time with her, a lot of time, I don't know, only God knows. Only He knows the plan and we have to accept it. I know without a doubt He loves us and only wants what is best for us.

I will say through all of this I have never felt closer to my Savior and I would have never realized it until this. Isn't that strange. I have always had a close relationship with Him from the first day I was saved, but nothing like this. I see Him in a different way. I am totally vulnerable to Him. We are His in every sense. I guess I knew that to an extent but not like this. I don't even know if I am making sense. It's funny how we seem to never have the right amount of time to spend with Him, but when something comes and we need answers, help, deliverance, we find every second possible to pray to Him throughout the day. That's where I find myself. I don't want to get so busy I lose this precious time I have come to know with Him. I seriously want to see life through His eyes.

blessed

So the past few days have been pretty good. There are things around the house to remind me when I am busy of what the circumstances may be. Whether it's Lexi's ultrasound pictures hanging on the refrigerator or tons of handouts we have been given on her conditions. Her ultrasound looks so perfect in every way. It's so hard to look at those and think she has conditions to threaten her life. Her picture really looks like all our other children's ultrasounds. You know the profile picture they usually try to capture. We continue to have faith. Believe it or not when I come across people that know our story and stop to give me encouragement I haven't cried the past couple of times. I really am trying to have joy with her as long as I can and God has given me peace to do that.

On July 27th in the middle of the night I felt Lexi for the first time really kick. Not a butterfly touch, but a real jolt. It was truly a wonderful feeling. I haven't been sleeping that much at night, it's a very broken sleep. So to be able to feel that when no one else was awake in the midst of the night when my thoughts are usually on what might be based on her diagnosis, well it was emotional to say the least. The next morning, Sunday, July 28th, I was laying in bed still trying to wake up and get myself ready for church. I was so exhausted, Lexi kicked again. I rolled to my back and put both hands on my stomach to try to feel her kick with my hands. I wanted so much to feel that little jolt with my hands. After just a second I felt her little kick. I was surprised to feel anything from Lexi only because from the articles or blogs I have read on Triploidy children, the parents typically didn't feel them often if at all. I am currently almost 21 weeks, but she is measuring 2 weeks behind so I really hadn't anticipated feeling her anytime soon if at all. I felt our 3 yr. old at 21 weeks pregnant. I called Stevie in there to see if he could possibly feel her, I wanted him to be able to feel her so badly, but that was it. Here's hoping to more little kicks from our sweet Lexi.

There are so many things that make you think maybe the doctors are completely wrong about our Lexi. Perfect looking ultrasound, hearing her heartbeat again, and feeling her kick are all things that make us hopeful. I do know what the amnio results are, I am not in denial, just keeping our faith that God can and will heal her. I pray that at our next ultrasound that they are baffled at what God has done. No matter the outcome, I hope to keep telling His story on our little Lexi's life. We are blessed!

Thank you for your prayers!

a new day

Yesterday, I woke up feeling so different than I have been feeling since we received the news about Lexi over a week ago. Still can't believe it's all happening. Yesterday was the first day I didn't cry once. I felt like Lexi would be okay. Does that mean I believe I will carry her to term and she be what we expect, not sure of anything. I do know if that happens, oh wow, how wonderful that would be, but the peace I felt was what ever the outcome Lexi will be okay, we will be okay as a family. It's hard for me to express certain feelings right now because I do want to hold on to our faith that she can be healed, but at the same time I know what the doctors say about Triploidy. I haven't been sleeping well at night, last night was the first night I was able to sleep. On Wednesday, I was able to nap during the day from 11:30 until 4 in the afternoon. I had no problems falling asleep that night at 10:00. I forget that with the news of her condition I am still 20 weeks pregnant and Lexi is still growing inside.

I am not sure if I mentioned much about the Dandy Walker syndrome only because that was her first diagnosis before the amniocentesis and it seems like even my thoughts have been overshadowed by the Triploidy diagnosis. I know I talked about her condition with fluid but not the outcome as far as delivery for us. I have to be monitored by ultrasound to make sure she isn't developing hydrocephaly. That's where the fluid continues to build on her brain causing her skull to expand in the womb. The fluid can continue to build because there is no way for it to recycle like in a normal brain since she has cyst like area by the 4th ventricle. They can't tell by ultrasound if there is any filtering a little or none. If that happens to a certain extent then I will have to have a c-section because Lexi's head will be too big to deliver. That terrifies me. Before I had kids I would have hoped for a c-section, not knowing how complicated those could get, I was just afraid of delivering a baby. Now that I have delivered all of our little ones the thought of a c-section scares me. I guess the unknown and unfamiliarity of it all. I know both are delivering your child just different ways. We will just have to see which way things go. Please keep us in your prayers about that. I am also terrified that I may have a doctor that doesn't know the full extent of our situation. I know they talk and read our charts, but the fear is still there. I guess because when I went to the doctor to hear Lexi's heartbeat nothing was really mentioned about Dandy Walker and the affects that could have on our delivery. The only thing written on my chart for diagnosis when I was leaving was Triploidy. So I have to be sure when I go back next week that is discussed.

There are so many things to discuss, seems like I think of something new each day. While the doctors are planning for a stillbirth or a baby that will not last long once born, I am thinking okay what if she is born for days or longer despite the diagnosis. They are thinking a shunt placed in her brain to relieve pressure isn't something we need to do because she will not make it anyway. I am thinking if she needs a shunt, go ahead and do it regardless of how long she has. It might help prolong her life and I will do anything even if it's for an extra second. I probably sound like I am rambling in most of these posts, but that's how my thoughts seem, a lot of ramblings. Thank you for your prayers.

the little things

Throughout this journey so far, God has shown himself. Not that He has to, but He does. We had another doctors appointment this afternoon to check my blood pressure, etc. They are basically checking me every week to make sure I don't develop preeclampsia which is common when carrying a baby with Triploidy. They are also checking to see if Lexi's heart is still beating, if we go in and they cannot find a heartbeat then they will induce. As long as we hear that sweet little heartbeat I will continue to carry her. When we went in today, I honestly had tried to prepare myself just in case we didn't hear her heartbeat. After just a second there it was, I cried and cried because I thought there's my Lexi, she is still fighting. It was a strong 156. We are so thankful to have her a little longer. Don't get me wrong I am holding out faith that we will have her here forever. We know that's God's choice and His plan.

Then on the way to a session tonight, yes I had a session. When driving to meet my client God shared a rainbow. I took a picture of it to remind me that He is here.

I love photography and while I would love to stay in my bed under the covers in a dark room until we know what God has in store for us, well I have to try to get back to life. One of the hardest parts of this journey is when people see that I am expecting and are overjoyed for us and ask when we are due, you know all the normal questions. I have made up my mind to have joy in this pregnancy. Do I break down, yes, of course, do I have doubt, yes, do I get angry, yes. I want to have joy, so when people ask I choose joy. I tell people her due date, that we are having another sweet baby girl, and that we are so excited. We are blessed to know Lexi and God's love growing inside of me. I am thankful to so many people who have reached out to us and told their story or shared how they are praying for us and Lexi. I am so thankful.

where do you go

I found myself over the weekend cleaning the house and cleaning the car out. I stopped and thought these are things we do before our due date so we will have everything ready and perfect for when we bring our sweet baby home. Things are different with Lexi. I thought I was crazy, why am I doing this, for what?

Maybe there is a chance we might bring Lexi home. I don't know with all the results against us, we have God fighting for us. His plan, while I don't know what it is would love to believe that it's bringing Lexi home. I think about what our little Lexi would look like at our 3 year olds age, brown haired or blonde haired, feisty or calm in nature. Doesn't matter I know what I long for is her little arms around my neck just like my other 4 have done. In the first days after finding out her condition I would look at our other little ones and think why oh why can't her little heart and brain form perfectly. Then there's Triploidy so much more than that. There is not a moments peace.

I stare at the tiny little gown that we bought for her after we found out that she was a little girl. It hangs on my dresser right beside my bed where her bassinet was suppose to eventually be. I could of never imagined this for us, but this is where we are and how hard is it to believe. Everyday I feel like I am in a fog not part of the world. How crazy does that sound? It's so hard to be a part of it when I feel so emotionally drained and sad. I know it will get better with time. Labor, delivery, due date, birthday, those will be difficult. We are blessed to have a God that gave His Son for us, people that despised and hated His Son. I feel so unworthy to feel sad. I am so glad that we were chosen to be Lexi's parents, she was meant for us and we were meant for her. We are her family and she is our daughter. I think what's so hard to think about is how every parent brags on their children, when you get together with others it's so easy to talk hours about your children. I want so badly for everyone to know Lexi even more for her brothers and sisters to know her, to love her.

We love her more than she knows. Praying for healing.

continuing...

Amazing what little signs the Lord gives you in times like these. Everyday since finding out about Lexi there is not a moments peace. I think about it constantly from the moment she was first diagnosed with Dandy Walker syndrome to the moment we were told to prepare to go into labor anytime or if Lexi made it to term be prepared for a stillborn baby. I have played the voices of all the congratulations in my head. The kids asking for a sibling long before we decided to try again. Hearing the heartbeat for the first time. Seeing Lexi's sweet profile that is so perfect and thinking there's usually so many problems with children with Triploidy. She has no other problems. Her heart does have fluid, her brain has fluid, she has 69 chromosomes, while that sounds like a lot, usually there are so many other symptoms. The crying has ceased to a degree. I want to feel normal emotionally. Some people I know think I am crazy to want to carry her for as long as possible, but that's what I desire and until you have walked these shoes there's no way anyone would understand. We wait for another appointment this week to see if her heart still beats, if so we continue on this journey for as long as the Lord desires. If not, I will be induced unless I go into labor on my own before. So every week I anticipate what's going to happen. Emotions are high, still not as high as I know they will be when I am actively in labor knowing the outcome. Today while I was folding clothes our 3 year old finds her favorite outfit and puts it on, she was so excited it was clean. She reached in her pocket only to pull out a little white piece of paper that looked like it was washed time and time again but the writing remained. I took it from her to read. Here is the scripture, it was two sided.... "Then shalt thou call, and the Lord shall answer; thou shalt cry, and he shall say, Here I am." Isaiah 58:9 "Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth thee." Isaiah 26:3 I felt the Lord and cried with so much emotion and confusion. These verses gave me peace for today.

FISH results

On Monday evening my hubby and I decided to give our baby girl a name. We decided on Alexis Gray, we would call her Lexi. On Monday night I fell asleep on the couch only to wake up and feel like it was a nightmare. I went to bed crying and praying until the morning hours. I finally fell asleep. I was praying for peace. I begged for it. Tuesday, July 16, 2013, I went with my mom to buy a gown for Lexi that is something we have always done after finding out the gender of our baby. My husband thought it would be good for me to get out. I didn't want to be out, but wanted to buy Lexi a gown to try to have some normalcy. Wednesday, July 17, 2013, I woke up with peace. I felt somewhat like myself. We received a call from the genetics nurse and surprisingly I was okay. She went on to tell me that Lexi had Triple X. She said the FISH results showed Lexi had no Trisomy 13, 18, or 21, down syndrome, or mental retardation. I was relieved. I asked her once the other results came back would that change. She assured me that no those results wouldn't change. We had hope. We felt the worse we were dealing with was a Dandy Walker syndrome that could be possibly be born normal. At this point I just wanted Lexi no matter what we might have to deal with. We could do this. Thursday, July 18, 2013, I woke up in fear and doubt again. I was cleaning the kitchen and the song, This is the Day the Lord has made I will rejoice and be glad in it, popped in my head. I sang it to myself. That's a song we sing all the time with our kids to start our day off. I went to our bedroom to try to be normal and fold clothes only to be upset again. Our three year old came in singing that very song, This is the day. She hadn't heard me. I asked my husband if he was singing that with her and he said no. I felt like God was working through her to show me this is His day. No mistakes! We received a call about 10:00 am from the genetics counselor. She said they were disturbed by more of the results that came in and that the doctor wanted to see us as soon as possible to discuss what there finding meant. I asked her if she would tell me anything. She said that from their findings that children have 46 chromosomes and Lexi has 69. She has Triploidy. Triploidy means she has an extra set three extra sets of chromosomes 13, 18, 21, X, Y which is incompatible with life. WOW, what a difference from what we heard the day before. So we were anxious to meet the doctor. My husbands mother and father came and had the children spend the night so we could deal with what was to come. We met with the genetics counselor first. We were prepared to tell her from the beginning that we were not terminating our pregnancy. She respected our decision. After telling her of our faith and my daughter singing tears began to flow. I couldn't hold it together. I needed to hear God speak to me, to tell me it was okay. She told us she was a Christian. That was not what I expected, I honestly felt like they would be pushing for us to terminate. God moved again. We then went to the doctors consultation room to meet with him. This was the same doctor that did the amnio. His first words were I am so sorry. He was so very compassionate even though he delivers not so great news on occasion. So not only does Lexi have Dandy Walker she has Triploidy. He said with Triploidy babies usually miscarry in the first trimester. It's rare to carry longer. We are 19 weeks. He said he knew we are not terminating but he has to explain our choices by law. Since Lexi has made it this far either her heart will stop beating, I will miscarry between the 22 and 28th week of pregnancy. If I carry to term, which is highly unlikely that she will be stillborn or we will only have a few minutes to hours with her. He said this Triploidy is extremely rare. He's never seen a case where everything appeared to be normal with the results found. He said she has no spinal bifida which is a characteristic of Triploidy. Another characteristic is the fourth and pinky fingers are fused or the fourth finger is completely missing. This was not the case with her. The only abnormality was pericardial emulsion which is fluid around her heart other than the Dandy Walker. Her ultrasound looks normal. All fingers and toes are present. The placenta wasn't completely normal but nothing jumped out at him. Only until he saw the results of the amnio did he go back and study the placenta. Usually in Triploidy cases the placenta gets enlarged and starts to form clusters like grapes within it. He said mine has started to do that. Lexi's face is formed beautifully. There are some risks to me as well. There is a chance of preeclampsia which can cause all sorts of problems. They will monitor me closely every week to check blood pressure, placenta, and Lexi's heartbeat. That starts next week. So we wait to see if I go into labor or if her heart stops on it's own then I will be induced to deliver her. I want to be careful of my own health because of our 4 children, but I want Lexi for as long as I can have her even if that's safe in my womb. These are my hardest thoughts.

Lexi's diagnosis

This photo was one of our first when we found out we were expecting. I was 6 weeks.

Monday, July 15, 2013, we went in for a routine ultrasound and to find out what the gender of our baby was. At this point I am 18 weeks. Let me first say that for a few months I had been telling my husband that something just didn't feel right. Not sure what. I didn't mention this to any one else because honestly you want to believe for the best. I passed those feelings off but prior to our appointment, many times I thought about calling the doctor to see if my appointment could be moved up. I thought to myself if they were to ask why, well I was just worried. I guess I felt like they would think I was crazy when there were no signs of anything to be worried about. So I waited until the original date.

So on Monday the ultrasound technician called us back. I was immediately looking for the heartbeat. There it was so beautiful and precious. Beating away. We were able to hear it and it sounded just as beautiful as it looked. AS far as our family predictions, my 10, 7, and 5 year old were guessing boy, 3 yr. old and my husband and I were guessing girl. We decided girl only because few weeks prior I had started getting super emotional. Just like when I was expecting our third child, a girl. Just one of those things where there is no way to determine but for fun you go off of all your previous pregnancies to make a guess.

The baby was so bent like in half with her knee up to her head, the ultrasound tech kept saying the baby is so bent and won't move so we can see what the gender is. Finally after poking around we see those three little lines. The baby is a girl! We were overjoyed that another little girl would enter our family. We really didn't care boy or girl, we were just excited for another baby. I told my husband we were going to have three weddings to plan. whew, what a thought! The technician then said she was going to get the doctor and take a break to see if we could get better images of her. You know at this point in your pregnancy they check and measure everything, the heart, brain, cord, fingers, toes, everything. She came in with the doctor and proceeded to do the ultrasound again. A very eery quiet set in. I just stared at the screen looking at our sweet baby girl thinking this silence can't be good. I noticed they were focusing on her brain. The doctor broke the silence with the news that this is what I am seeing, your baby has what we call Dandy Walker syndrome. You guys reading the blog can search that or just go to the tab at the top of the page that describes this condition.

We were told that the severity of Dandy Walker just depends and we wouldn't know until she was born and we started to see certain delays. Pretty much she could be normal, because there are people with Dandy Walker that were never diagnosed or the most sever would be that she would have to rely totally on us. This was all so much to hear. We cried. I thought horrible thoughts that I know now were normal feelings given the situation, but none the less I felt like the most horrible mother for thinking. I cried at every thought that entered my head. I wasn't sure what to pray. Should I pray Lord take her as soon as she is born so she doesn't have to live a life of not knowing us and how much her family loves her. She would never marry. Would she be able to love us and wrap her arms around my neck. Our life would be forever changed. Should I pray Lord let us have her no matter what, I want her, she is our daughter. So many emotions not knowing how to sort through them all. Feeling guilty for thinking those thoughts. I felt selfish. I wanted my daughter to be healthy and normal. I wanted her to experience my love that I wanted so much to give her. I wanted to yell out to the Lord, you tell me how to feel!

We met with the doctor in another room to discuss Dandy Walker and what we were looking at. In normal children the fluid area in the brain measures between 9 and 10mm, Lexi's is measuring an 11mm. Doesn't seem like a big difference maybe there's hope. Also on the ultrasound Lexi look completely normal. No abnormalities of her face, hands, feet, no spinal bifida. She is missing her vermix and the 4th ventrical has fluid. He went on to say that Dandy Walker children sometimes don't make it to term but there was a chance she might. We were given some hope. We did hold out hope that she would make it to term and be delivered totally healthy and normal. We were praying for healing. The doctor has delivered all of our children except our first so we have grown very close to him. He was very sorry and humble in talking with us. He referred us over to the main hospital to have a more in depth ultrasound. I am so thankful we were able to get right in and not have to wait days. Once there we were seen right away. The ultrasound took about an hour and a half. So many pictures and measurements. We did have our children with us to find out what gender we were having. I tried to hold it together for them, but they knew something was wrong just not sure what. We had a dear friend come pick them up from our doctor. They love playing with her children and just think they are awesome so I knew that would keep their mind clear and off of what just happened. I will forever be grateful for them.

I loved seeing our daughter for that long on ultrasound. Just watching her flip and kick. All was super quiet. I sat there playing the words of the previous doctor in my head. After the ultrasound we went to a conference room where we waited for a specialized genetic doctor to come in and tell us what he gathered from the ultrasound pictures.

We didn't have to wait long. When he entered he had a very somber and concerned look on his face. We weren't sure what he was about to say. He said our baby girl was measuring two weeks smaller than her gestational age of 18 weeks which concerned him. He said this isn't looking good. He was extremely sincere. He then went on to say that most likely we were dealing with chromosomal abnormalities but we wouldn't know for sure unless we allowed them to do an amniocentesis. It was left up to us but it would help them determine a course of treatment once she was born if she made it to term. We had never really been keen on amnio's because we knew without a doubt we were NOT terminating our pregnancy. The only reason we decided to was because they mentioned it could help them determine there course of action when she was born. Anything to help our little girl. So I was prepped for the amnio which didn't take long. I was very nervous because emotionally I was thinking of the risks of the amnio to her and what she might be going through. A lot of emotions, I love her, hate I have to be doing this instead of rejoicing in the fact we are having another baby girl. The joy of pregnancy was gone and was replaced with so much fear, anxiousness, doubt. I wanted so much to have joy, faith, happiness even in the midst of this terrible news. I tried to stay strong because for some reason, if I didn't then it meant I didn't have faith that God could heal her. After the amnio I just sat there on the table and cried tears of helplessness. I felt so alone from God. I was believing lies the devil wanted me to believe. My sweet hubby was there the entire time holding me. I couldn't have gotten through it without him. He truly is my life.

Once all was done, we knew that the preliminary results would come back fairly soon so we waited.....

the beginning...

So this is our journey with Lexi. We found out we were expecting on April 7, 2013. We were so excited, baby #5. Our children at the time were 9, 6, 5, 3. Two older children are boys and the two younger are girls. When baby was to arrive they would each be a year oder, 10, 7, 6, 4. My due date is set for December 11, 2013. We talked with our little ones and they were so excited. They had been asking for a while for another brother or sister. We just had to decide if we were ready! We called our families and told them the news. Everyone was so excited. I think by now everyone kinda knows that if we call don't be surprised if you hear the words, we are expecting again. From the beginning I wasn't sick which was different from my others. I was horribly sick with all of them except our third, just very emotional with her. Not a big deal every pregnancy can be so different. We were just happy to be bringing another sweet baby home. I thought about everything like a mother thinks, I didn't care it was our fifth, felt like our first. We had an ectopic pregnancy after our first a few years back so after we find out we are expecting, my doctor always wants to see us fairly soon to rule that out again because that can be very dangerous if undetected in the beginning. We went in at 5 weeks. I was a little nervous, I think that is to be expected whether this is your first or tenth. When we saw the ultrasound on screen, there was our sweet baby, heart beating as beautiful as ever. So tiny, hardly there, but there she was. We praised God. We came home showed the kids the ultrasound picture, took pictures of them holding the picture and just rejoiced in our sweet news. Every week things were going great. Feeling great! We went to the doctor for our OB work up when I was almost 11 weeks. They detected the heartbeat and it was a strong 160. I was relieved and so excited to hear that sweet heartbeat. Everything was good.