Monday, August 30, 2010

What a fighter!!

She is still alive which was a huge surprise because I hadn't felt her kick since Saturday night and I honestly thought we would go in this morning and see her heart stopped but this girl is a fighter!! She sure has been proving the doctors wrong cause they thought she wouldn't last this long. Everything is pretty much the same. She hasn't gotten better but at the same time she hasn't gotten worse which is good. The doctor told me it would be harder for me to feel her cause she is so tiny so that is normal that I didn't feel her yesterday. They still didn't measure her because of how small she still is that the measurements wouldn't be accurate. They will for sure do the measurements next week cause it will be accurate by then. The doctor also said which I still am having a hard time understanding but he said my placenta has trisomy 21 too and that is why she is developing so slowly but he believes she is growing but at such a slow pace but enough to keep her alive. He was so optimistic today and we scheduled my next three weeks of appointments out because he thinks since she has lived this long that she could possibly go much longer. All in all it was a great appointment.
I am so happy she is still here because yesterday was so hard when I didn't feel her move. It was like reality hit and I knew she wouldn't make it and I didn't want that. I want her here. And each week she gives me a tiny glimpse of hope when I see her still alive. Yesterday was such a spiritual day at church, in our classes we talked about bad things that happen to good people and also the trials that we get that are too hard to handle. I felt that those talks were just for me because it helped me to have more peace with things.
So I guess we just take it a week at a time still. I just have to stay as busy as I can so I can get through these weeks faster and not think about it so much. I still feel frozen in time right now and I know when this is all over I will wonder why I was so depressed about everything. But for now I will try and make it through this emotional roller coaster.

Tuesday, August 24, 2010

Dear Sienna

My dearest sweet baby girl,
I wanted to write you letting you know how much love I have for you. This past month has been the hardest month I have had in my life but at the same time I have never felt this blessed in my life. Sweet Sienna you have been such a fighter through all of this and it is hard to see you get more sick with each ultrasound that we go to but I love seeing your sweet hands and feet kicking around in there. Your kicks have gotten more faint each day that passes but I cherish each and everyone of them. I don't know what this next month has to offer for us and you but I am glad that I chose to be your mother up in heaven and I chose to go through this trial here on earth because I wouldn't change you for anything.
Your sweet big brother loves you so much I can tell. I have dreams of you two playing all the time and I don't know if that will be here on earth or if that was you two in heaven before he came. He gets so excited to see pictures of you and always says 'baby sister!" He knows who you are and I can tell that you two were best friends in heaven. After each meal Gavin always points to my stomach and asks if baby sister is eating now and I always tell him yes. I know that your brother was sent to us to help me and your dad get through this hard time. He keeps us smiling cause he knows that that is what you would want.
You can tell your dad wanted a little girl so bad when I got pregnant. When we went shopping he would pick out the cutest dresses for you. He has great taste and knows what would look great on his little girl. It breaks my heart to see him in tears over you because he doesn't cry very often, before this all happened I had only seen him cry twice so you know he truly loves you with all the tears he has shed. He has been taking care of me and it makes me sad that he can't feel your kicks cause you are too tiny for him to feel.
We love you so much Sienna and we are excited to have an angel watch over us if you don't make it here. We will strive everyday to be better so that we can be worthy to see you again. I am so lucky to have such a perfect daughter. Thanks for blessing our lives and we hope to do the same in return. I love you and you will always be my little girl no matter what happens.
Love always and forever,

Monday, August 23, 2010

No Change

We went in today thinking that we may be delivering but there was no change in her since last week. She still has fluid in her heart but it hasn't grown or spread. Her blood flow is still pulsed so it is the same but hasn't gotten worse. They weren't able to measure her because it was too soon since the last time they measured. They said they have to measure every two weeks so we don't know if she has grown or not. We go back next monday to measure her to see if there is any change then.
We had a horrible doctor that mumbled the whole time. He looks like he is almost 90 and it took him forever to get words out. He would compare my situation to a comic strip where he said it was like the devil poking someone with a pitch fork to one door that said damned if you do and the other one that said damned if you don't. So he was pretty much saying if we deliver now she wouldn't live but if we keep her inside she may pass away so I guess we just have to take it a week at a time. He thinks I will for sure have this baby withen the next month no matter the situation so we will see.
I am excited to go to a better doctor this next monday and he will be my permanent one from now on. He was the one that helped us out last week and he was amazing and wanted the best for us and the baby.
I am not sure if I should be on bed rest or not cause the doctor kind of joked that it would be hard for me to rest when I have a two year old but he said it is best for the blood flow to get to the baby if I am rested so he never gave me a definate answer so I will just be taking it easy this week.
Sienna is a fighter and I know she is telling us that she is going to do all she can for now.

Wednesday, August 18, 2010

Not Good News

Well I was hoping for a miracle when I went into the doctors today but it looks like everything has gotten worse. She has barely grown a few days worth in the past 4 weeks. She is 7 weeks smaller then she should be right now. And the doctor didn't think she would grow much more. She has started to form pockets of fluid around her heart which weren't there when I went to the cardiologist and that is the first sign of heart failure. Her blood flow is severe through the umbilical chord and it only gets to her when her heart pumps. In between pumps her blood flow completely stops. They gave me a few options, one was to try and deliver her today but she wouldn't survive cause she doesn't even weigh a pound yet. He wants her to get to at least 500 grams before she would be able to survive through delivery. But he didn't think she will even make it to that cause she is not even reaching 400 grams right now. I go back in on Monday to see if there is even a change in anything. He is afraid she won't make it until then but our best option is to wait it out.
My doctor was so nice about everything and wanted the best for us. I am not going to main doctor cause I am extreme high risk now. I may be delivering Sienna next week but we don't think she will make it. I am doing okay cause I have been preparing myself for this. My doctor told me to stay down and rest until next Monday cause that will be the only way the blood would flow better and she would get more oxygen. Sienna has been a fighter and I am grateful that I have been able to carry her this long. She must be too perfect for this life and we will miss her but know that she will always be in our hearts. Thank you everyone for your kind words and prayers. Even if your prayers haven't made a miracle happen for Sienna they have really brought comfort to me and Quin. We have surprisingly been getting through this because of all the support and we honestly believe our heavenly father has been by our side and carried us through this trial. We will sure have an angel watching over us.

Tuesday, August 17, 2010

Waiting is no fun

I feel like it has been a year since we found out everything about Sienna. Time seems to slow down a lot. I go in tomorrow for them to measure her to see if she has grown at all and we will know if there is hope from there. I am praying for a miracle but I know it isn't in my hands anymore. I have a cute story that made my day. I got this lamb from my parents neighbor and a sweet card that went a long with it. When I got home that day I put the lamb in amongst all of Gavin's stuffed animals thinking that Sienna wouldn't be playing with it so I can just give it to Gavin. Well the next day while Gav was playing with his toys he saw this lamb. He immediately picked up the lamb and marched over to me and said "But Mommy this is baby sisters!" He refused to play with it cause it was his sisters. I then asked him if he wanted me to save it for when she comes and he said yes so it is sitting on his dresser waiting for Sienna. I wish I had the faith and hope that my 2 year old did that day of knowing she will make it.
I was at my grandma's funeral last weekend and Sienna was kicking so much that day. It made me feel so good and I felt my grandma there and I could picture her and Sienna sitting there watching the funeral. Last week we have been discussing about burying her if she doesn't make it. It is a little pricey and we were worried about coming up with the money but at the cemetery at my grandma's funeral I could see my husband walking around looking at all the headstones and after everyone left my mom handed me the last two roses she had left from people putting on the casket and she told me to go put those roses on for Sienna. I lost it right after she said that because moments like a funeral made everything so real to me of her passing away and I did not want that to happen. I want her to fight for her life so we can raise her. My husband held me tight after I put those roses on and said he doesn't care about the money and that we are going to bury her so we have a place to go see her every year. I hope that we don't have to but if we did that it would be nice to have a place to go every year. Now I wish this waiting game is over. I don't like the unknown. I wish I knew everything right now. But I am sure learning a lot of patience which I probably need to learn right now.

Wednesday, August 11, 2010

The joys a kick can bring

Since my grandma passed away Monday night I hadn't felt Sienna move inside of me. Today I laid on my bed for over an hour holding my stomach hoping I would feel her and I felt nothing. Then I started thinking she probably passed away with my grandma. I have 2 doctors and my main one called me today after talking to the other doctor to make sure they were on the same page. She confirmed that they think Sienna will pass away before full term and they said I have an option to deliver her early but they don't know if she will survive long after that and I could just hold her and let her pass away in my arms or I could try to go full term and deliver by primary children's hospital so they can take her as soon as I have her and see if there is any chance for her but that is if I even make it to full term. I had an appointment at the salon tonight which was hard for me to go after hearing the news again that my child won't make it and crying my eyes out again but I knew it would be good for me to go and do what I love. I am glad I went cause my client was a sweet nurse who was so comforting and talked about all the miracles that do happen. I do believe in miracles but I don't want to get my hopes up. I am planning on Sienna passing away and have already started the grieving process. I know it is in heavenly fathers plan and he knows what is best for her. But after my appointment tonight I sat as I read e-mails and I felt kick after kick from Sienna, it was like her telling me she is still here for now. It seems like she moves more when I am happy and relaxed so my goal is to enjoy her while I can cause every kick I feel from her is a miracle.

Tuesday, August 10, 2010

She will always be in my heart

Well the call I have been waiting for all weekend came today. My sweet Sienna won't be making it to our home. They said the only thing they can do is just monitor me more closely but she will eventually pass away. I am meeting with the doctor next week to talk about my options which I am sure are abort the baby or they can monitor her until she goes. She also said that I can stick with my original doctor until she passes. This has been really really hard for me but I know she is so perfect that she needed a body and that was it. I know heavenly father has a plan for her up in heaven. I know it will be a great reunion when I get to see her again. My grandma passed away last night and I am happy that my grandma can be with her right now. I want to say thank you to all you fabulous DS mothers for the love and support you have given me through this hard time. Now it is just a waiting game to see how long she will last. I will always love Sienna and she will always be my daughter. I will let everyone know when she passes. I have had a feeling since Sunday that she wasn't going to make it so I was preparing myself for this call. I know it will take me a while to get through this healing process but she has a mission to fulfill up in heaven. I love you Sienna and I can't wait to see you on the other side.

Monday, August 9, 2010

Why am I feeling like this?!

Since yesterday I have had a feeling that my baby is not going to live. I haven't heard from the doctor yet so it has made my mind wander for the worst. I have seen people that are due around the same time as me and they have a big belly where I still look like I over did it with the chocolate which I have with the emotions going. I keep wondering what if I look chunky instead of pregnant because my baby isn't growing at all. I had a lady at my salon tell me my face looks like it has filled out and I know it isn't from being pregnant it is from emotional eating. Then I have started to blame myself for the reason my baby is like this becuase I ran a half marathon when I was 10 weeks pregnant and it has been hard to not run since cause that is how I get rid of my stress. I have been so scared. My hope is starting to fade. Why hasn't my doctor called me when the cardiologist said this is really concerning and they need to do something about it asap. I have called 3 doctors trying to get an answer and I haven't gotten it yet and I have left 2 messages. I just want to know why she isn't growing and if there is a chance. I don't dare buy a thing for Sienna until I have her here safe and sound and then I keep thinking about delivering a dead baby and how I am going to handle that. I want these feelings to go away but it seems like they won't until I hear from a doctor to tell me they can fix it. Sorry about the negative post but I just need to let it out. I feel like everyone elses world is going on around mine when I am stuck waiting to see if she will live. I miss being happy all the time and I am sick of this pit in my stomach. I just hope it goes away soon.

Wednesday, August 4, 2010

Heart Update

First off I just want to say thank you for all the comments that I have received. I am so overwhelmed by how many mothers are out there going through the same thing as me and it brings such great comfort. I know that I have people that I can turn to now for so much help and support.
Today we went and visited with the pediatric cardiologist to check out Sienna's heart. They lady took an hour doing the ultrasound and took 150 pictures of her heart. After that the doctor came in and told us that she has an AV Canal Defect which is very common in kids with down syndrome. He said that the success rate of these heart surgery's have been great and Sienna would have a normal delivery and we would come back when she is 6 months for her to have open heart surgery to fix that. After he gave us the good news he then proceeded to the bad news.
As I said in my previous posts that her growth has been decreasing. Well the doctor told us that it isn't because of the heart defect cause that shouldn't cause her to slow down her growth. He said there is something wrong with the placenta and the umbilical chord and our baby isn't getting the nutrients she needs. He said that is a great concern and there isn't much he can tell us about that area because he just works on the heart. He sent out letters to both my doctors and said they should be calling me within the next couple of days.
I have no clue what my doctor is going to tell me or if they are going to put me on bed rest but it is scary cause once we find out one thing is fine it seems like there is something else that is wrong. I am so scared and I hope there is a way that they can get nutrients to her or she could die cause she isn't growing. I feel so numb from all the news right now and I am sure it is going to hit me tomorrow after my doctor calls and I will have another break down. I hate waiting to find things out I just want to know everything now so that I can sleep easy and get through this.
On the positive side my cute little 2 year old has been hilarious today and has really kept our spirits up. I swear an angel told him to lift up his parents through these hard times cause he really knows how to cheer us up when we are sad. I don't know what I would do without him. I know he was sent her to get us through these hard times.
Now I just have to wait and I will update when I found out what the next step is to keep Sienna strong.

Tuesday, August 3, 2010

My True Feelings

After I got over the fact that Sienna has a chance to live then everything hit me. I got so overwhelmed by what I am going to do, how I am going to raise her, is she going to be made fun of cause she is different, etc etc. I had a major break down the day after I found out. I couldn't breath I was crying so hard. Everything became a reality. I have two sister in laws who are having healthy girls around the time that I am and I am scared because my girl will be slower then them. When they hit their milestones it will still take Sienna another year to hit hers and I wonder if she won't be as good as friends with her cousins because she will be slower. It just has scared me so much then my friend sent my a blog address with people who are going through exactly what I am going through and I spent hours reading blog after blog of these mothers with the same down syndrome child and I started to feel better. There is hope out there. These down syndrome children are such special spirits. All they need is a body and they are so perfect. Sienna's mission on this earth will be to come down and bless the lives of others because she is so perfect she won't have to be tested. She is here for us.
I feel so overwhelmed by the spirit and that heavenly father trusts me and my husband to raise such a precious daughter of his. And I have had people that say we are special to have someone so perfect come down to us and I feel so unworthy for him to have chosen us. She will be a great blessing in our lives and she will have a big brother who will be her major protector.
I know our journey will be challenging but so rewarding. I just want to get her here safe and sound.

Her Name

Since I found out that our daughter has downs I wanted to get a name for her so it seemed more real to me. I kept looking at names but the only name I could think of was Sienna which my husband heard on his mission. He baptized a little girl who was 11 with that name and has loved it ever since and ever since he told me he liked that name it stuck with me too and I can't think of anything better for her. Her middle name will be Marie after me which is my middle name. It feels so much better to have a name for her.

Our Journey

So I have read a lot of peoples blogs with kids with down syndrome and I want to be apart of the blogging community with these sweet spirits and I want them to know my story too. I am 25 weeks pregnant and I found out a week ago that our little girl has down syndrome. It all started out at my 20 week ultrasound when they had a hard time seeing the 4 chambers of the heart and said my baby is measuring a month smaller then my due date and has decreased in her growth so they sent me over to a nicer hospital with nicer machines to get a closer look. There they did another ultrasound and found out there was something wrong with the heart. The 4 chambers were not connecting in her heart and her growth still was decreasing. A specialist then came in and told us it could be one of three things which were trisomy 13, 18, and 21. She said with the 13 and 18 the baby had no chance to survive and if it was the 21 then she would have down syndrome.
They said they were hoping it was just a heart defect that they could fix cause they said she doesn't look like she is downs that it is just her heart or she may die. They then asked if I wanted to take a test of my amniotic fluid to find out what it was so I said yes and the results came back 4 days later saying she has downs. My doctor kept apologizing but all I kept saying is "So there is a chance she will live??" and she said yes and at that moment that was all I cared about. I just wanted this baby to live. The specialist then called me that night and said she still has a small chance to live cause she is so tiny. But I have had so many prayers in behalf of my baby that I feel like there is great hope she will make it. If there is anyone out there with a kids with downs can you please help me through this journey since I don't know anything about it and am scared.