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.