Booties

A family friend that works with Jared's mom made this little booties for Mackinley. They will be perfect with her dress. Thank you Shirley.

7 Days and peace will come

In 7 days we will welcome MAckinley into our family. As I was browsing the Internet I found a LDS family in Utah that had a little girl with Trisomy 18. I have often wondered how I will emotionally handle Mackinley's birth. Reading this blog was such a comfort to me as she wrote of the peace she felt the entire time. They only had 45 minutes with their little girl. But the mom said she was filled with peace the entire time. And the spirit was very strong. I hope this is our situation. When we were first told last week the Mackinley is "transverse breech" which is only deliverable by C-section. I became very worried. I have no desire for a c-Section. But after a few days of concern I finally knelt down and like everything else in Mackinley's life turned it over to the Lord. As we pray daily as a family and individuals our only request has been to be able to have alive long enough to share our love for her. I have felt strongly this will be answered. So after a lenghthy discussion with Heavenly Father I told him I just want what will provide us with the opportunity to hold her alive whether it be hours or a matter of minutes. I believe the peace will come when Mackinley leaves. The veil between Heaven and Earth is thin and while this will be hard for a long time, blessings will abound and we will see miracles take place. i have never felt that Mackinley will live for a long time. That is not the miracle I expect. The miracle will come in the form of peace, love, and understanding for myself, Jared, Avery, Tucker, and even little Jordyn, as well as all our extended family and friends.

Catching a break........

I have tried really hard to be positive through all of this and so far it hasn't been that hard to find the good. But after the doctor appotinment today, I am going to take a minute to complain. After all we have been through over the past 5 months you would think we just might catch some sort of break. No such luck. Last week when we went in Mackinley was head down and I was at a one. Today I am still at a one and sh eis now completely breech. I have no desire to have a c-section. So on the 7th when i go in to be induced they will try to turn her. If they cannot turn her they will try to deliver her breech. And if she gets stuck I will be headed for an emergency c-section. Why does this cause me to complain? After all I have had 4 major surgeries in my life so what's one more. Here is my fear. If I have a c-section there is a good possibility that they will removed her alive. And while I lay on the table being sewn back together from the surgery she could die. Which means I will lay one that table wondering if she is alive and because of the surgery I might never get to hold her alive. It terrifies me and breaks my heart to think that if she doesn't turn and ends up stuck I could lay on the operating table while she takes her last breaths without her mom. AM I angry at our situation? No, we aren't given anymore then we can handle. I just pray that this isn't something the Lord thinks I can handle. Through all of this I don't feel I have asked him for much, I never asked for this trial to be taken away. I have only asked that we be able to hold her alive just long enough to share our love, hugs, and kisses. So I will spend the next 12 days asking him to help us, to let her turn, or atleast not become stuck if she doesn't. But in the end it is his will, and I will accept whatever may come. PLease keep her in your prayers.

What lies ahead

Today as I was cleaning the kitchen my mind began to wander to what life might be like after Mackinley has returned home to Heaven. As I pondered this I was taken back to shortly after we learned of all of her complications. It was early November and the weather was nice enough for us to go for a walk as a family. As we walked by a little park next to the walking path by our home Avery and Tucker began to play in the leaves. As I stood watching them my heart was filled with joy. Soon our whoel family was throwing leaves and laughing and playing. As the fun wound down and we resumed our walk I was ovecome with tears. Tears of joy for the three beautiful children that bless my life daily. Accompanied by tears of grief and an almost overwhelming emptiness for the baby that should be playing in the leaves with us next fall, but will be watching from Heaven instead. As this scene replayed in my mind, as clear as if I was right there in that moment, I felt the whispering of the Holy Ghost telling me that there will be many hard days. Just as that day was hard. But if I strive to find and cherish the small joys that each day includes I will make it. And when the joys seem too hard to find those are the days that I will be carried. I know the days ahead are going to be hard. But I also know that my Heavenly Father loves me and because of that he will not give me any trial that I cannot overcome as long as I seek his help. Part of me is just as excited to bring Mackinley in to the world as I was for my other children. I cannot wait to meet her and tell her how much I love her and how thankful I am for all she has taught me and the great blessing she will always be to me. Someone once asked me after learning of all of her complications if we would still have an open casket when we have the viewing. My response was a resounding yes. No matter what she is a beautiful child of God, so faithful that she only needs to come for a body before she can re-enter the presesnce of our Heavenly Father. And no matter what her disabilities my be she will be beautiful to me. I am soo thankful for a merciful Heavenly Father that I know will not have her stay here in pain, that I will be able to return her to him where she will be whole and waiting for Jared and I. And while losing her is going to leave an emptiness in me it is such a comfort to know that not only did Christ suffer for my sins in the Garden of Gethsemene, he suffered for any earthly pain I would ever feel. And he knows what I am going through. And will carry me.

The one she will take with her

We have been so blessed by so many acts of love and kindness it has been amazing to say the least. When we found out the our baby Mackinley would not live I went in and told my boss about all of the complications and what we were facing. She then asked, "Is there anythign I can do for you?" My first response was no, then I remembered that Laurie(my boss) is an amazing quilter so i asked her if she would make a white quilt for us to bury Mackinley with. OF course being the great woman she is she said yes. And about 2 days ago presented me with the finished product. The pictures do no justice. It is beautiful, with each bow hand tied and sewn with love. It will be the perfect thing to place with Mackinley as we bid her farewell.

A Hard Decision

I went to the doctor on Monday. I am at 35 weeks and dilated to a 1, which is normal for me. But I was measuring 36 weeks, which means my amniotic fluid level is increasing. After talking to the doctor he told us that because of the situation we are in I can basically be induced whenever I want. Normally you have to be 39 weeks to guarantee the safety of the baby. But since it will not change the fact that Mackinley will not live for very long I can do what I feel is right. At first I thought there was no way thatI would want to be induced we would just go as long as possible. But after talking to Jared, and doing A LOT of praying and thinking. I have decided to be induced at 38 weeks. I have prayed about this and feel that this is the right thing for our family. 37 weeks is considered full term so 12 days will not change her outcome. This also provides us with a set date so that we can make the necessary arrangements for who will take our other 3 kids until it is closer to time for them to be at the hospital. And it also makes it more realistic for us to have the family members that we want there. At first I felt like I was choosing to end her life. But after a long talk with Jared, and a very lenghty prayer, I know that my choice will not effect how long Mackinley is with us. That is entirely up to our Heavenly Father. He knows us and our needs, as well as what is in mackinley's best interests. So with just over two weeks to go I am preparing myself for a hello and good-bye, and am so thankful that I know with out a doubt that families are forever and that if I live the best I can I will be able to be with Mackinley again to hug and hold her, and enjoy all of those special moments only a baby can bring. Does that makes this any easier? No, but it makes it bearable. Am I scared of what lies ahead? Without a doubt. Am I strong enough to give my new baby back to my Heavenly Father? Not by myself but with his help I will make it, each day will be just a little better then the one before. If all goes according to planned we will welcome mackinley into our family on March 7th. And return to her Heavenly Father when he feels it is time to call her home. Even if I never hold her alive I will be grateful for the 9 months that I have been so abundantly blessed with. It is more then anyone thought I would have and more then I could have hoped for. Mackinley is and always will be a miracle to me. I never in all my life imagined that a unborn baby could change my life so much, and touch my heart so deeply. And so now we count down the days to hello, and dread the days to good-bye all at the same time.

Miracles

As of the past week or two my sleeping has not been so great. It is one thing that Dr. Dowdle always asks me about when I go to my appointments. And tells me to make sure and tell him if I need anything. I am stubborn and don't wnat anything. I have a VERY low tolerance for medicine. And if I needed to take anything Tylenol puts me to sleep for a good 6-8 hours. And until lately I was doing just fine. Well Monday we went in for yet another ultrasound. Mackinley's heart rate was down to 129. Which is low for her. And we learned that the is excess amniotic fluid. Which comes with it's own risks to both of us. And it means that she is not swallowing like she should be. And my risks of having her early increase. As I lay down to sleep Monday night I knew it would be a long night. Lately I dream of her birth, sometimes she is alive for a while sometimes she is not. And then the funeral follows. My mind just won't shut off. So after only getting about 3 hours of sleep Monday night Jared suggests that when we go back to the doctor I get something to help sleep.
I decided to instead ask him to give me a blessing. Usually these are very personal and I don't share But this one was a miracle to me and I want to have it to remember. So i am going to share. I have worried alot about how I will cope when the time comes. How I will grieve and still be mom to the 3 beautiful children that I have here with me. HE blessed me that even though there will be sad days I will be able to do the things I need to do to take care of my children. The peace that came to me was instant. It was as thought my Savior was standing next to me telling me "Peace I leave with you my peace I give unto you. All will be well. When you are too weak I will carry you and what you have will be enough. It will still be hard but through our trials we are refined, and she will be waiting for you, and knows how much you love her." I was also blessed with sleep and I slept like I slept before I was pregnant. So while I know we will return Mackinley to the arms of her Heavenly Father miracles abound. And for that I am thankful. Mackinley doesn't need a miracle SHE IS THE MIRACLE sent to our family to help us learn and grow.

(attached are some pics of a beautiful blanket and head bands made for Mackinley by my wonderful friend Alisha...THANK YOU)

The Birth Plan

This has not been an easy thing to do and after working on it for a month it is finished and I will take it to both Doctor's offices tomorrow.
Birth Plan for Mackinley Ann Koyle

“Every child no matter how fragile their life or brief their days changes the world.”

We have known since the end of October that our daughter Mackinley has Trisomy 18, a chromosome abnormality. With this knowledge we are fully aware of the severity of this condition. And with this knowledge we know that she will more then likely not survive very long after birth. We have chosen to write this birth plan to help all of those that are involved with Mackinley’s delivery to understand our wishes for her birth and our hospital stay. With the severity of her complications we desire that she only receive comfort care with minimal intervention after her birth. Because we know that our time with Mackinley will be very brief it is our desire for her to be surrounded by her family in a loving and caring environment. With this knowledge our main goals are:
1) That this birth plan be followed as closely possible allowing Mackinley to have the best chance to be born alive.
2) Mackinley’s life and passing be as peaceful as possible.
We truly appreciate all of your help and support. Please do not hesitate to cry, or be sad in front of us if that is how you feel. This is a part of life we will walk together and we appreciate all that you will do for our family.

Desires for Kassey’s Care during Labor and Delivery
1) We would like all staff to be fully informed and aware of our situation.
2) Any and all procedures not outlined in this birth plan should be approved in advance by Jared or Kassey
3) We desire to have continual fetal monitoring at all times
4) We have discussed having a cesarean section and determine it to be unnecessary in this situation.
5) Kassey requests for pain to only have an epidural upon request. It is her desire to not be given any other form of pain medication before or after deliver that would impede her memories of the time that we will have with Mackinley.
6) It is very important that NOBODY enter the room without knowing the situation.
7) If possible it is Kassey’s desire to breastfeed Mackinley

Our Desires for Mackinley’s Birth and Any Time We Might Have With Her
In the Instance of a Live Birth
1) If Mackinley is born breathing on her own we desire for her to be handed immediately to Jared or Kassey. If necessary please perform standard suctioning rubbing and vigorous drying. The use of a 0-2 bag is acceptable we do not want any extraordinary measures. And do not want her transferred to a hospital with a NICU.
2) It is Jared’s desire to cut the cord
3) Certain procedures (weighing, eye ointment, etc...) are to be delayed until both parents have held her, and if possible these procedures should be done while being held by her parents.
4) We desire no warming tables, incubators, etc. be used instead we would prefer the use of skin contact and warm blankets providing us the most time possible with Mackinley
5) We ask that no procedures be done without one of the parents present.
6) We would like to room in with Mackinley and request that any and all procedures be done in our presents. And ask that Jared accompany her if any procedures must be done elsewhere.
7) We desire for Jared or Kassey to be holding her at all times possible
8) We would like to give Mackinley her first bath, and dress her in clothes we will provide, and have as much hands on contact as possible.
9) An NG tube may be used if necessary (placed and maintained while in our room if at all possible.
10) If Mackinley stabilizes we would like to take her home as soon as possible on comfort care and with the help of hospice.
11) If Mackinley’s condition begins to deteriorate we wish to be the ones holding her at her time of death.
12) If she experiences apneic episodes we do not desire to for her to be stimulated we will just hold her and love her during those moments.

Visitors
1) If possible we desire a place for our children and close family to be waiting so that they will be there for whatever time we may have with Mackinley
2) It is our desire that our children: Avery, Tucker, and Jordyn be brought in first to meet and hold Mackinley. Please have a member of the nursing staff bring in our children, and no one else. We will ask for the others when we are ready.
3) Please check with us before allowing in any visitors.
4) Please do not make visiting hours an issue. We desire our family to be able to spend as much time as they would like with Mackinley. We ask they be allowed in at any time we have family that might be traveling to see her and don’t want anyone to have any Avoidable regrets or missed opportunities.

If Mackinley is Stillborn
1) If Mackinley’s heart is not beating at birth we do not want any attempts at CPR. Or any other form of life sustaining measures. We are fully aware of her complications and are prepared to let her go whenever that time may be.
2) If Mackinley is stillborn we desire for her to stay with us for as long as we feel necessary. We ask that you give us privacy to grieve, without abandoning us.
3) It will still be our desire to bathe and dress her when we feel ready
4) We do not desire to have a chaplain (if you have one) as a member of our clergy will be coming.

Lasting Memories
1) To help us celebrate and remember these special times with Mackinley we would greatly appreciate it if you would help us by saving any keepsakes or other mementos: crib cards, hats, blankets, locks of hair, hand and foot prints (we have scrapbook pages done up for these), bracelets, cord clamp, molds of hands a feet (a friend will do those), bassinet card, and anything else you can think of.

Mackinley is a miracle and a blessing. She is very special to our family, and we are grateful to be able to have her in our life no matter how long or short her time may be. We feel she is a blessing to us and all she will come in contact with. We have tried our best to prepare ourselves as well as our children for this time in our lives. We desire to spend as much time as possible with her before she returns to her Heavenly Father. We understand this will be difficult for you as well, and we appreciate all of your help, support and care for our sweet baby girl. And hope that she will touch you life as she has touched ours.

Blessings

Blessings come in all shapes and sizes. But the greatest ones are often the ones found in the trials we face. Is this journey with Mackinley a trial? Some would say yes. I say "No, it is an opportunity to experience one of the greatest blessing that will ever come into my life." So with only 6 weeks left I kneel everyday and thank my Heavenly Father for the AMAZING blessing he has sent my way. And for his generousity in letting my family experience the joy of brining life to one of his special children. How lucky we are.

Quiet Days Make Me Nervous

Last night I think I was up every two hours. Either going to the bathroom, being woken by Jordyn, Jared's phone calls from work, or some STUPID dream. This has been the case lately. I did notice that Mackinley was moving around like crazy. Which was comforting until I went through the entire day at school without feeling her move even once. When I have days like this they become VERY long. As I watch the minutes tick by on the clock. Waiting for 3:30 to roll around so that I can come home grab the monitor and listen for a heart beat. Fortunately when I got home today I counted her heat rate at 138 beats per minute. I feel very strongly that if we lose her before delivery I will know the moment she slips away. And yet all the same the lack of movement can make for long days. And unfortunately for my other three children my stress level is pretty high when i get home which means my patience is at a MAJOR LOW. I often pray that as we go through this blessing of life with Mackinley that my other children will not feel slighted, and I will be able to care for them in the way I need to. Only time will tell. SO we continue 33 1/2 weeks with olny around 6 1/2 left and thank our Heavenly Father for each day we have her here with us.