Friday, December 31, 2010

Tonight is New Years Eve

Tonight is New Years Eve. And while many of people make resolutions of diet, exercise, budgeting, organizing etc. Mine is a very different one. This coming year is going to be a long and hard one. Consisting of many firsts. Not the kind you usually celebrate. Ours will not be firsts with Mackinley. They will be firsts without her. But, with the bad we always have a choice. We can choose to find the good. To "Stop seeking out the storms of life and enjoy the sunlight." SO that is my goal. To take each day after she passes onhe at a time and reflect in the joy that she has brought to my family, and the lessons she has taught. Even though I am 7 months pregnant and we have not met face to face, she has already taught our family soo much. SO I will strive to take joy in the blessing it has and will always be to have as a part of our family. Even though it may only be a short time on earth, we are blessed to have a beautiful baby girl that will be waiting for us in the eternities. Where there will be no pain, or sorrow. She will be whole and happy. So when the hard days come my new years goal is to get on my knees and thank my loving Heavenly Father for the blessing of an angel baby and 3 beautiful children, and all of the hands and hearts that have and will continue to reach out to us. One of the greatest lessons to learn is to accept from those around you. And so while heartache and tears will come and the days may seem dark. I can choose the road I travel, that doesn't mean I have to be strong all the time. But, the test is how we deal with the situations we are placed in. And I can be bitter or I can be grateful. How many people are soo lucky as to have an angel baby waiting for them. What a blessing Mackinley is and always will be. Happy New Year.

Thursday, December 30, 2010

Enough to give

It seems that when I lay down to sleep at night I think of all sorts of things to type on the blog but when I wake up in the morning they are all gone. I only have eleven weeks left if I go the full forty. Which I haven't done with any of my kids. So I am thinking she will arrive in about 9 weeks I she makes it to delivery. The thing that amazes me the most is the love that my other children have for her already. They always bless her in their prayers, and constantly want to talk to her whether it be saying good morning or good night. I have decided that the first day jared has off I am going to have him take a picture of them doing this so we have it to remember. Jordyn talks about "Kinley" but i know down the road all she will remember of her little sister is what we tell her. So we need to capture as many memories for her as we can. The other day I tried to sit Jordyn in her high chair she said "no. baby chair for Kinley." They love her so much. And I am often concerned about how I will help them cope with the loss of their sister while trying to cope myself. Will I have enough to give.

Tuesday, December 28, 2010

When Thank- You Isn't Enough

We have been so abundantly blessed as we have traveled this raod with Mackinley. So many people have thought of, prayed for, and given. It doesn't matter how big or small all the gifts mean more than words can say. We have recieved picturs, books, music, quilts, braclets, cookies,a "Christmas Jar" full of change, and most recently an outfit that means soooo much. It is my hope that she will be able to wear it if just for a brief while. And while to some people some gifts may seem big and others small. In my eyes there isn't a single one that is more important then the other. Because they are all given out of love, to us and our beautiful baby girl. How thankful we are for each and everyone of them. There are not words that can express the love in my heart for all of the prayers that get me through the day, and the kind words and deeds. While "thank-you" will never bee enough it is all I have to offer. So to everyone out there who has offered a prayer in our behalf , or given anything whith the intent to ease the pain/burden. ""THANK-YOU" a MILLION times over!!!

Monday, December 27, 2010

Mixed emotions

Christmas has now come and gone. What a day. Jared had to work so it wsa just me the kids and my thoughts(not a good combination). The kids chose to wait until their dad could be home to open gifts. Which was very touching, knowing it would not be until sunday evening. We weren't due to be out to Jared's mom and dad's until around one. So while I was thankful for a day to celebrate the birth of our Savior. There were many shed tears thinking about Mackinley. And how while normally i would be counting down the weeks until her arrival. Everyday I know is now just one step closer to a hello, which will become a goodbye. I am 28 weeks now, and worry everyday that she will not be strong enough to stay long. I know I should be grateful for anytime we might get. Most babies with trisomy 18 don't even survive to delivery. And we have made it 7 1/2 months. SO while I am thankful that each day she is alive inside of me just increases the chances of us getting to see her alive, I also worry knowing that her heart could stop at any time. And I think the worst thing would be to make it close to full term and lose her right before delivery.
A girl I know that was due in March just delivered a 3 month early 2 1/2 pound baby. And he is breathing on his own and everythign looks good. Mackinley will be lucky if she makes it to that weight at full-term. The hardest part is not knowing how long we will keep her. So while my heart breaks daily, I am hoping and parying that it is in my Heavenly Father's plan for her to stay with us for any amount of time, as long as she is not in pain.

Friday, December 24, 2010

A reason to celebrate

I am sure tomorrow will be filled with joy and some tears as well. While I am so thankful to have 3 beautiful healthy children that are the joy of my life. And I look forward to watching them open the gifts and see the joy on their faces. Deep within me a part of me is breaking knowing that next year instead of celebrating with 4 children, it will still be three. And will include a stop at the cemetery. Where a gift will be left for the baby we will be missing. And while I know she Will only be gone for a while, that will not take away the pain.
The saving grace will be the fact that I know I am a daughter of a loving Heavenly Father. One that loves me so much he willing gave his own beloved son to be sacrificed for my shortcomings. And as I think of that I think a part of me understands the pain he felt as he watched Christ suffer both in the Garden of Gethsemene and on the cross. While I will not have to watch Mackinley suffer, I am carrying her knowing that She will not live. Yes, we were given the choice to abort the pregnancy when we found out the complications. But if a loving Heavenly Father was willing to sacrifice his own son for me do I not owe him all that I am. I know he has a greater plan in store for our sweet Mackinley, and after all he has done for me this is the least that I can do. As we celebrate Christmas tomorrow I will be forever grateful to a young women willing to travel to Bethlehem and give birth to a baby in a manger. And a Savior willing to give his life for me so that I can be forgiven of my shortcomings, I know they are many. And while it doesn't take all the pain away I will be grateful for the peace that it brings and the many reasons I have to celebrate.

Wednesday, December 22, 2010

Back to the Doctor

We went back to the Doctor today. Good news: the cysts in Mackinley's brain are gone, she has two kidney's with once fully functional, amniotic fluid is normal. Bad news: One kidney has a partial blockage, she is in the 3rd percentile for size weighing in at about 1.5 pounds (average weight for 7 month baby at least 3 lbs.) Heart defect is fatal, she will not grow enough to be strong enough to fix her heart.
He asked us if we knew what we wanted to do. He said one of two things will happen.1 Because of the defect her heart will just stop one day(before she makes it to term) 2 she will make it to term weighing in at approx 2 1/2 - 3 1/2 pounds. If we deliver elsewhere and her lungs start giving out she will be placed on a ventilator, where she will lay along with pain mediation for the spinabifida. Until her lungs become too week for even the ventilator to work.Primay childrens kept one baby alive for six months and 2.2 million dollars. Laying in a bassinet on a vent. NO THANKS
Or we can have her here and if she is strong enough they will give her a feeding tube and place her on oxygen until it is time for her to go. And we will be surrounded by family. And our children will be able to hold her and love her and tell her goodbye. There is even a possibility that should she be strong enough she could come home for a day or two....
So the decision is made. We will stay here. And love her and let her go. I will not force life upon a child that isn't meant to stay. TO me it is selfish to place her on major pain meds and a ventilator just so i can hold her longer. I would rather send her back to a perfect body . And rejoice in the fact that she will be mine to raise one day when this life is over. She will stay for as long as the Lord intends and when it is time we will hold her tight, kiss her goody-bye and let her go. Because we love her we will let her go.

Tuesday, December 21, 2010

Now what

Jared and I had decided to have Mackinley here at the local hospital where we would be in the care of doctor's we know and surrounded by family. Today i took our 4 year old to the family doctor for a sinus infection. After seeing Tucker the Doctor asked me some questions about Mackinley. It was then that I learned that our hospital doesn't have the equipment it would need to support Mackinley if she makes to term and cann't breathe on her own. So if this was the case and aside from the breathing she is strong enough to survive for a while she would have to be transferred to another hospital. NOW WHAT....
Do we have her here knowing that she more then likely will not be able to breath on her own, and just let her come and slip away. or do we go somewhere else where they will have the necessary equipment to support her if her lungs aren't fully functional? I thought we had it all figured out. And once again here we are lost in the unknown...
Is it fair to force her to breathe knowing that in the end the result is unavoidable... it's not a question of if she will die, it is how much do we do to keep her here?

Would they want me to come

I have been asked over and over how many people we want at the service, if we are restricting it to close friends and family, or just family. This is something Jared and I have discussed and we both feel VERY STRONGLY that we would like it to be open to anyone that wants to come. We are blessed with a lot of family and friends, and a wonderful ward. We have seen our Heavenly Father touch many people through our journey with Mackinley. I don't think I am an amazingly strong person, deffinately no better then anyone else. But I feel that we are being used as a tool to share the gospel. And as I think about how the day will come when we will have to let Mackinley go there is nothing we want more then to be surrounded by family and friends. If it were any of my other three children i would want the same for them. And while Mackinley and I haven't met face to face, I have felt her spirit and she is no less important so I want no less for her. So when the time comes if you are wondering "Would they want us to come?" The answer is YES! She has and forever will bless our lives. And while it may be sad knowing that she will be in a better place where she will be whole is a blessing in itself. And whoever you may be we would love to have you there when we bid not a farewell, but a see you in a while. BEcause I know she will be waiting for Jared and I. And while I will enjoy my life her I will look forward to the day when I can raise my baby girl.

Sunday, December 19, 2010

She is the miracle....

It seems no matter where I go whether it is to the store, church, or even sitting at home skimming through facebook all I see are babies everywhere. Maybe this is to prepare me for when Mackinley is gone. While I am happy for the people I know it becomes one of the few times I let the question "why?" run through my head. When I look at the ultrasound pictures we just got she looks perfectly healthy. And so deep down a part of me thinks maybe we will get a miracle when the truth is, Mackinley is the miracle we are supposed to have. With all the complications she has the fact that I am still carrying her is a miracle. The fact that she has a normal amount of amniotic fluid around her is a miracle. The fact that she chose our family is a miracle for us. And so while other people get to hold their babies. If only for a minute I will not only get to hold a beautiful baby, but a miracle that will be waiting for me. And she will be mine forever.
They say miracles come in all shapes and sizes
Ours is found in a tiny baby girl to good for this world.

Thursday, December 16, 2010

Taking the bad with the good





The Doctor's office called me on Tuesday and said that they wanted me in for the next avaliable unltrasound. This happened to be today at 11:15. So We have learned that Mackinley is still 3 weeks behind in size. And all of the original problems still exist. Her kidney's are functioning and she has a "normal" amount of amniotic fluid around her for now. But, they found a heart defect, instead of the 4 chambers of her heart being seperate the bottom 2 open into each other, and so do the top two.. So we will take the bad with the good and continue to wait for when our Heavenly Father calls her home. I am excited to have these new pictures of her. And no her skin isn't bumpy it is smooth like all babies that is just how the pictures look when done in 4D....

Wednesday, December 15, 2010

Eyes to see




We have felt your prayers and are thankful for your thoughfullness.... In these pictures are just a few things we have been blessed with as we travel this raod with MAckinley, and our Heavenly Father. The picture says "What we have once enjoyed we can never lose. All that we love becomes a part of us." (Helen KEller.) The other is a quilt. This quilt has a special story. I served in Young Women's with a lady named Shelia Swenson. In March she passed away from cancer. This past Sunday her Daughter JEnny called me and asked if she could bring me something. When she brought me this quilt she told me the following story: She said after her mother passed away she felt like she needed to make a quilt, a girl quilt. She didn't know anyone having a baby. And even after trying to brush off the feeling she went ahead and made it. And yet she still had no one to give it to. Then she learned of what we are going through. And as she gave it to me she told me she knew it was her mother telling her to make it for me. Shelia wanted me to have it and so she promted Jenny to make it so that Jenny could give it to me for her.
What a testimony of the plan of salvation. I know that Mackinley was with Shelia before she came to us. And I know that because Christ was willing to be born and die for me that I will have the opportunity to be with them both again. I am so thankful for the peace that knowledge gives me. And while the days are still hard. I can feel the love and prayers being offered in our behalf. In the midst of trial blessings will abound if you just have eyes to see them.

Sunday, December 12, 2010

Blessings abound

Today as I sat in church our Stake PAtriarch gave a talk I am sure was just for me. He talked about how we have the choice to follow the promptings we recieve even when we don't know what the end result will always be. As we journey down this road I know that the end result will be turning Mackinley back over to our Heavenly Father's care. But I don't know when that will happen. If she will be born alive, or if she will slip away and I will deliver a baby that never takes a breath. Either way the only thing I have been aksed to do is be willign to provide a special angel girl with a body, and live worthy to care for her when this life is through.
As we have traveled this road over the past month and a half, we have been blessed to be surrounded by wonderful, loving, supportive family and friends. A dear friend of mine named Shelia Swensen passed away this past March. Today her daughter Jenny called me and asked if she could stop by. She brought to me a BEAUTIFUL quilt. She told me she made it after Shelia passed away and she didn't know why at the time. But she now knos that she made to give to me for Shelia. I cried mostly after she left. What a blessing it is to be surrounded by such remarkable people that support us through acts of kindness love and above all prayers. I thank my Heavenly Father each day as the blessings continue to abound

A new perspective

As the holiday season approaches I have been thinking a lot about why we celebrate this time of year. I guess you could say I have a new perspective. Christmas is to celebrate the birth of our Savior Jesus Christ. We have been blessed with the opportunity to provide a body to a beautiful baby girl that I believe is so perfect that all she needs is a body so that she can return to her Heavenly Father. Without the willingness of our of Father in Heaven to allow his son Jesus Christ to come to earth and gain a body so that he could suffer and die for us it wouldn't be possible for us to be with Mackinley again.
This new perspective makes me so thankful for a loving Savior that was willing to be born in a lowly stable so that the plan of salvation would be carried out. So while many celebrate the birth of Christ I will not only celebrate that but I will celebrate that it has blessed me with the opportunity to one day hold our beautiful baby Mackinley again and have her forever.

Everyday life

We are trying to keep life as normal as possible. And just keep going. I long for those things I won't get to have right now with Mackinley and yet sometimes my 3 kids make me crazy and I wish for peace and quiet. I often look at Jordyn and think after goin through this I will just be grateful for the three healthy kids I have.
I had a sweet boy come up to me at school today and tell me. "My mom says we can buy a present and give it to you for your baby." What do you say to something like that....
The closer it gets to my due date the more presseure I feel to get everything ready for the time to let her go. There is so much to do to be ready. The hardest part is knowing how many people to expect. And how to get my children through this.

Ups and downs

So last night I lay in bed and right before I go to sleep I always listen to Mackinley with the heart monitor (THANK YOU KARRIE/ MARY and JASON) and everytime I would find her heart beat she would kick the monitor. It was hilarioius. I know she was kicking it because I would feel it move in my hand. It was like she was saying to me "I'm fine mom. Leave me alone so I can sleep." I am learning on this roller coaster of life that no matter how far down the ride may go, if you look for them there are always ups. Even if they last but a moment.
As Jared and I work on preparations for when it is time to let her go. We decided that we will have a small memorial service then the grave side service. A part of me feels as though I should speak at the memorial service but I don't think I am strong enough for that... It's hard to know what to do. I never imagined I would be burying a baby.

A perfect night after a HORRIBLE day

So after shedding many tears. Just about all I own. what a sweet thing we were blessed with. I am convinced that Mackinley is growing. Last night after a long talk with Jared we laid down to go to sleep and as he reaches over and places his hand on my stomach Mackinley repeatedly kicks his hand. What a joy that is to be able to feel her movements on the outside as well as the inside. I think this has been harder on Jared then me. I can feel her from the inside. With the other 3 he would talk to them all the time. Last night was the first time he has really talked to her. HE told her it was her Daddy and he loves her and can't wait to see her. It was all I could do to not cry Each moment is a blessing. Most Trisomy 18 babies don't survive to delivery and who knows if she will or not. So we have to take in and cherish every sign of life she gives us. What a fabulous way to end a rough day. No matter how long or short her stay may be she has touched our life in a way only a child can.
"Every child no matter how fragile their life or brief their days changes the world." I know this is true for Mackinley has changed our world in so many ways and she has yet to arrive.

Everything a reminder

Today one fo my best friends at church blessed theri beautuiful baby girl. While I am soo happy for them. It was such a hard day I think all I did was cry. It reminded me that instead of planning a baby blessing with a dinner to follow with all of the family. We wwill plan a memorial service, with a graveside to follow. I had just finally got myself all composed when her mother in law. whom I have known for a very long time came over and gave me a hug and started crying. FOr the remaining two hours of just I was pretty much numb.
It is bitter sweet to watch all these people with babies. while I am soo happy for them I sometimes think do they know how lucky they are? I know that my friend does. And most people do. . Today was just one of those bitter sweeet days. Lately everything has been a reminder of how hard this is and at the same time how much of a blessing this has all been. It will be a long road that will be full of daily feminders some bitter and some sweet.

Sedatives

Since this all began each time I go to the doctor he asks me if I am okay,, how I am sleeping, if I need anything to help with sleep, or depression. I always tell him the same thing I am doing okay. My days are fine. In fact they go by rather quickly. At work I am soo busy I don't have time to think about it too much. And my evenings are filled with Avery's homework the needs of Tucker and Jordyn, fixing dinner, trying to maintain a decent looking house, and whatever other things might be going on. As for sleep. I have discovered it is not my worries of Mackinley that keep me awake. I know that while she won't be in my arms for very long she will go back to our Heavenly FAther to be in his. Which I am sure is a safer place then in mine.
The thing that keeps me awake is how we are going to take care of the other 3. By the time this is said and done we will be carrying between 8-10,000 dollars in medical bills. After insurance. And that doesn't even include funeral expenses. SO would I like a sedative? Sometimes I think "ABSOLUTELY." Could I ever take one. No, because I know that once I did and it took all the worries of everyday life away (because tylenol makes me sleep for 8 hours) I would not have the strength to come back and face them. I believe for me it would be much easier to not deal with the realities of life. But this life wasn't meant to be easy. It wouldn't be a test if it was.

Great Trials bring Great Blessings

We have recieved so many kind acts of service and love. What a blessing all of our friends and family have been. So far Mackinley's heart rate has remained stable at between 140-150 beats a minute. I have deffinately felt her move a lot more these past couple days. With strong enough movement to be felt from the outside. I am trying to be the optimist and tell myself it is because she is growing and getting stronger. But there is a part of me that wonders if the movements are getting stronger because the fluid is getting lower so there is less of a cushion between her and myself.
We have a two week break for Christmas coming up in about two weeks, and I am not looking forward to it. It is hard to not have my mind occuppied.
The bills have already started rolling in, and I don't not look forward to the ones that will come after we have said our good-bye's. I sometimes wonder how will will manage them all. But I know that GREAT TRIALS bring GREAT BLESSINGS. So we willcontinue to do our best to be worthy of what the Lord sees fit for us

The Christmas party

Last night was our church Christmas party. I broke my own rule. I tend to only cry at home. Well for part of the program they showed a video of the nativity. Inserted in the video were clips of families sitting together reading the nativity story. I did pretty good until they showed a dad with a baby on his lap as he rocked her in a rocking chair. That was in for me. I was out the door in a flash. Cried for a minute and was headed back in to sit with Jared and the kids.
My tears came for many reasons the main reason was as I sat there watching this video I was reminded that without the willing sacrifice made by our HEavenly Father of his beloved son JEsus Christ it would not be possible for us to hold MAckinley again. It was kind of a surreal moment to realize all the pain I feel my Heavenly Father felt for his son. And while I didn't choose this trial. Our Heavenly Father loves us so much that he chose to allow Christ to sacrifice his life for us. How thankful I am for a father's love for me.

No pity please

I have decided that there is a deffinate difference between feeling sad for someonme and having pity for them. As I go different places and see different people I know I can see in their eyes if they are sad with me, or if they pity me. I think when you are sad for someone your heart hurts when you think of their loss. When you pity them you look at them and think "oh that is do bad whatever wil they do." As I walk down this road I have decided I want no pity. Yes, losing a baby will be harder then I can even imagine now. And the pain will always stay to a certain degree. But will I ever look back and wish this hadn't happened? In my heart I don't think I will. Everyday that Mackinley is a part of our family rather inside of me or not is a gift from a loving Heavenly Father. And while we may not get to have first birthday's, day's of school, loose, teeth, dates, or any of those other things. I know with all of my heart that because of the plan of Salvation, and the willingness of my elder brother Jesus Christ to sacrifice his life so that we could live again Mackinley will be waiting for Jared and I on the other side of the veil. This has been whispered to my heart. Please feel sad with us grieve for us if you feel the desire. But don't pity us. We have been blessed to have a beatiful baby that will be waiting for us on the other side of the veil. She will be perfect, able to run and dance and play. Things every parent wishes for a child. And that is the GREATEST gift there is.

Everyday is different...

After reflecting back on my week last week I have decided that time off of work is not a good thing. Last week we ha da full week off for Thanksgiving because of snow days. And while I was hoem with my kids and had things to do my mind wasn't completely occupied like it is when I am at work. And I FELL APART. I cried like I cried after the trip to Ogden.
Today I went back to work. And my day was so much better. and everytime someone asks me how I am doing it helps. It helps me to talk about her. Whether Mackinley is born alive or not she will always be my fourth child and always a part of my family.
I was given an AMAZING gift today. A friend brought by the most beautiful picture of a mother's hands with baby feet inside of them and a quote by Helen keller that says, "What we have once enjoyed we can never los. All that we love becomes a part of us." THANK YOU KATIE!!! You are answer to a broken heart and many prayers.
While this will be hard and might break me for a while, I will be forever thankful that while not in this life I will have Mackinley always as a part of me. And hold her in the here-after.

Update

I honestly think that the doctor was surprised that I am still carrying Mackinley. And that her heart rate is still 143 beats a minute. They gave me the option of taking the glucose test. Since in all reality it will not make any difference if I have gestational diabetes or not. So I chose nopt to have it done. I did have to have my blood drawn for another rogham test. My blood type is -o (o negative) so I am not compatible with anyone. And without the shot if I lose her before term it could make it so I could never have kids again. We didn't schedule another ultrasound. I don't think I want one. Because if things are detioriating It will just add pain and stress.
We will go back to the doctor in three weeks. I asked for things we should watch for. Since we have a heart monitor the doctor said if we lose her what will probably happen is her heart rate will spike above 160 and then it will drop and she will be gone. So we wait.

Back to the Doctor

Well today will be our first trip back to the doctor since we met with after going to Ogden. I am a little nervous, not sure if we will be scheduled for another ultrasound or not. I hope we will so that we can atleast see if she is growing and how her amniotic fluid is doing. I will keep you updated

Tears and a name

I don't cry as much now. Life has become somewhat mechanical. When people ask I feel myself go numb as I give an answer almost as though it has been rehearsed for a movie, or play. Sometimes I don't even realize I am talking. I am 24 weeks now. And instead of looking forward to not being pregnant I wish that I could keep her safe within me forever. I am afraid that when the time comes I will not have the strength I need. Everday I pray for her to live long enough for us to be able to hold her and tell her how we love her, and can't wait to see her again. Sometimes I wish I could run out of tears. I only cry at home. But that often happens when the kids are asleep and JAred is at work.
This past year I had 2 very close friends pass away. They both had Ann in their name. So Jared picked Mackinley for her first name and her middle name will be Ann to honor them. Dear Mackinley Ann I will never run out of tears for you.

Th Doctor

On Monday we met with my O.B. And were given two more choices to make. Have the birth here surrounded by family. And let her live as long as she can on her own. Or go To Salt Lake or Boise and let her live in the NICU for as long as her body can stand. Now two cases are the same there is a %30 chance of surviving to deliver, And only a %10 chance of life after birth. So now we wait.
Some days are good some are bad. We will do continued ultrasounds to monitor growth and amniotic fluid. The genetists called us from Ogden and told us she also has Spinsbifida.
A friend of mine found us a fetal heart monitor so I listen to her everyday. Right now her heart rate is steady at between 145-150.
I don't often ask why. As a member of The Church of Jesus Christ of Latter-day Saints (LDS /Mormon). We believe that after being seale together in the Temple that our family unit is eternal. So I know that our baby girl will be waiting for us when this life is over.
With the comfort that brings a piece of me is still broken. Knowing instead of having first birthdays and Christmas's with her they will be celebrated without her.
The days are long and hard. The first were the worst I remember crying so hard I couldn't breathe. OR crying until I fell asleep.

Ogden.. This can't be happening to us

After laying on the table for what seemed like forever. And seeing several pictures taken of the organs and other things it was time for the results. Finally the Doctor comes in and tells us that she has all the signs of a Trisomy 18 baby. That means hat the 18th chromosome was duplicated too many times. A condition that "is not compatable with life" We now have a few choices. We can just keep going and let whatever is going to happen happen. Or we can do an amnioscentesis. To determine the actual problem. What we know for sure is: her heart is sideways and in the middle of her chest, her stomach and other organs are under developed, her kidneys are not producing suficcient amniotic fluid, her arms and legs are short, she cannot extend her arms, and has clubbed feet, the back part (cerebellum) of her brain instead of being flat is banana shaped due to her spine pulling on it, and she has choroid plexus cysts in the part of her brain the produces the spinal fluid.
Knowing the complications our options are : Terminate or induce labor to end the pregnancy, or carry as long as possible. In my heart I knew that termination was not even an option. And Jared felt the same way. So here I am now 24 weeks.

The world CRASHED down

I was just finishing up my lunch break when my cell rang. The call said restricted, so I almost didn't answer it. SOmetimes I wish I wouldn't have. It was the nurse from the doctors office. She said to me, "There are some complications with your ultrasound. We have made you an appointment for this Friday at 11am at the Makay-Dee Maternal Fetal Medicine clinic." She mentioned something about clubbed feet and they couldn't find the kidney's and the baby was 3 weeks behind in size.
Being a member of the Church of Jesus Christ of Latter-day saints (LDS/Mormon) We believe the priesthood has been restored and my husband gave me a blessing. I knew then we would not keep this baby for this life.
My world came crashing down. I called my husband at work told him we had to go to Ogden on Friday and there are problems. And in walked my 1st grade P.E. class. I couldn't stay I couldn't quit crying. And so I left for the day and spent the remainder of the day numb. The next two days and the drive to Ogden took forver and at the same time came all too soon. What came next no parent can ever be ready for.

In the beginning

In the beginningfrom Our Trisomy 18 Angel by koylefam
If you are reading this because your world has just been turned upside down as ours was my thoughts and prayers go out to you. This is the ongoing story of our journey with Trisomy 18.
I thought we were finished having children. With 3 vibrant healthy children I was ready to be done. Then one day Jared and I felt very strongly that we needed to add to our family. 4 weeks later we had a positive pregnancy test in our hands. As far as health we had no concerns. We are parents toa healthy 6,4,&2 year old. All arriving with no complications. At about 14 weeks I noticed that our baby didnt move a whole lot. I attributed this to the fact that I am the Physical Education teacher at a local elementary school. I just figured I didn't notice since i am on my feet and active all day long.
At 20 weeks we were ready for the first ultrasound. We took our three children along because the girls wanted a sister and our boy wanted a brother. We figured hearing from the tech would make the dissappointment easier for which ever one would not be getting what they wanted. I remember laying there as they took pictures. The lady didn't show us feet or hands and didn't say a whole lot. I just figured it was because it was a different person then we usually had. She said she thought it was a girl but wasn't sure and that the radiologist would read the films and if there were any concerns our dr. office would call. Instead of the normal 15 pictures we walked out with 5.