Capturing Time

This is such a bittersweet journey. Each day that we have is a wonderful blessing. We are trying to make the most of every moment. I am trying to memorize every beloved kick. I am making a habit out of noticing the small stuff and making a mental note of it. I also find that journaling has been a significant piece of documenting our time. This blog lets me organize my thoughts and make sense of what I'm really feeling. I also started a journal to our baby when I was 7 weeks pregnant, back when we still called our Kinsley "Baby D." I have continued to write to her and document all of the memories we are making. As I said in a previous post, we had maternity pictures done to capture our brief time together as a family. We would like to share these pictures with everyone. Jennifer Wagner did such an incredible job. We are so grateful to her and thankful we were directed to her. Follow the link below for her blog with some of the pictures from our shoot.

http://jenn-wagner.blogspot.com/2012/08/josh-katy-baby-kinsley.html

Right now we ask that your prayers for our family be shifted in a new direction. We have been making a lot of arrangements and plans recently and it posed a very serious question; Does planning for the events after Kinsley's death mean we have given up hope? Please pray we have clarity about which arrangements to start making as well as guidance in the decisions we make. We also ask you pray for us to continue trusting God and keeping faith in His miracles. Maybe we will never even have to use any of our plans. Maybe she will be healed and this will all seem like a bad dream.

Keep on Keepin' On

Psalm 23:4 Even though I walk through the valley of the shadow of death, I fear no evil; for Thou art with me; Thy rod and Thy staff, they comfort me.

Psalm 56:3 When I am afraid, I will put my trust in Thee.

Matthew 6:34 So don't worry about tomorrow, for tomorrow will bring its own worries. Today's trouble is enough for today.

Last week revealed my first taste of saying goodbye to Kinsley. After a week of very little movement from our daughter, I started to become worried and started to focus on feeling any little kick or flutter. From Wednesday to Thursday, 24 hours had gone by without noticing a thing. My doctor recommended coming in to check for a heartbeat that day.

The drive to the appointment was heartwrenching. I knew in my gut that this could possibly be the end. No matter how much time you have, I know losing a child is really something that you cannot prepare for. I know that when the time comes, there will never have been enough moments with my baby. I continue to try to cherish now and prepare and plan for what I can. However, I know that those things won't really make it easier. We will never be ready to say goodbye.

The good news is that Kinsley's heart is still beating strong and steady. She is still hanging on! We are now in the third trimester and I am so proud of her for being such a fighter. We are praying that she will make it to the home stretch, so that our chances of meeting her at birth are the best they can be. We know she wants to meet us too and that's why she is still with us now. She has defied the odds already; our little miracle.

I think she was just saving her energy for the weekend. After the appointment to check on her last week, she partied all weekend! She was up all day and night kicking, rolling, and tumbling around. She gave us quite a scare, but it didn't stop her from having a great time! Silly baby girl.

I am so blessed for all of these moments with Kinsley. As I have said before, I don't know if I would have been as in tune to her if I did not know about her diagnosis prenatally. I would have still loved her and loved feeling her, but now I emphasize the importance to know her personality now. Without a miracle, I will never be able to get to know her as she grows up. I won't see her take her first steps or teach her the alphabet. I won't hear her cry in the night or have the chance to be completely sleep deprived for her. All we have is now. Life is something that we cannot predict - regardless of your circumstances. The end of our days could be tomorrow, so we have to learn to cherish every second and live for today. Kinsley has taught me that. She has taught me that what is here and now is all we need. And all we need is to learn to live 100% in those moments and trust that God will lead us through.

There is no use in grieving what we will not have with our daughter. These thoughts leave me devastated, but I try not to become obsessed with them. It is easy and even necessary to mourn for the life we planned. It hurts me at the deepest part of my core. However, we have been given the gift of right now with her. We have the joy of hearing her heartbeat, feeling her kick and roll, and talking, reading, writing, and singing to her. Every day I realize something new that I know about Kinsley. We laugh because we know so much about her personality already.

I think she is a lot like me. She is a fighter and when she is determined, does not give up. She is a strong little soul and does not care what the medical books say. She is going to meet her mommy and daddy no matter what it takes! Kinsley is stubborn like that, just like Dad. She also is a princess, maybe even a diva at times. She does things the way she wants and when she wants. She can be kicking me in the same spot for 10 minutes, but when someone tries to feel, she stops immediately. She proceeds to kick only when they leave. She doesn't feel the need to impress anyone. She especially hates having her beauty sleep interrupted! She kicked the doppler as hard as she could today at the doctor, as if to say "I'm trying to sleep here!" Kinsley is like daddy when it comes to pictures. She is shy! She does not like it when we try to look at her and always rolls away or covers up her face. Our daughter is a mini me and I know she would have daddy wrapped around her little fingers. He is so in love with her, even though it hurts knowing what will probably happen in our future.

Below is a picture from a photo shoot done by a wonderful young woman named Jennifer Wagner. She did these for us free of charge and we got the first peak today! Jennifer is a very loving person who I feel blessed that we were directed to. She is also a very talented photographer. We are looking forward to seeing the rest and hope they are all this gorgeous.

Our visit with the neonatologist

First and foremost, thank you to EVERYONE who has participated in prayer this week. We were overwhelmed with all of the replies we received from friends, family, and strangers. We got a count of about 500 that joined us this week in praying for Kinsley and our family! We are forever grateful to all of the people who helped us storm the heavens with prayer! Prayer in numbers is power. We cannot say how wonderful it was to hear from all of you and know that you are praying for us. There is nothing more special to us than to know people think this is important enough to go to God on our behalf. Thanks again!

On Wednesday we had a very good visit with our neonatologist at the hospital. It wasn't good because he told us everything is going to be okay or that our baby would live. It was good because he was an amazing, compassionate, warm-hearted man who supports our decision to carry. He assured us that we made the right decision and that he does not know anyone who has regretted it. He commended us on being strong and making a selfless decision for our baby girl. His words were very comforting and he did not sugarcoat things, nor did he say anything insensitive. We know that God blessed us with this doctor. Not everyone is so lucky. The medical community is sometimes harsh about t13 and t18 babies, not even considering them people. We are so relieved that we did not end up with a doctor like that. He was very helpful and described things in detail, as well as in a way we could understand.

We were able to make important decisions about the life and death of our baby at this visit. We are currently working on finalizing Kinsley's birth plan and with his help, we feel like we have made the best choices for her. We want her time to be full of love and compassion, free of pain and suffering. We do not want to put her through any unnecesarry procedures or tests that will only cause her more discomfort. Weighing these types of decisions since Kinsley's diagnosis has been very difficult for us. These are not the choices you ever plan to make as a parent, but it is the hand we have been dealt. With the counsel of God and the love and support of those surrounding us, we feel at peace with the decisions we have made. We know that we are making the decisions that are right for her and not for us.

I wanted to share something the doctor told us. For those of you reading who are currently expecting a t13 or t18 baby, this is a very comforting statistic. He explained to us that this is completely based on scientific research and that he is telling us facts, not just trying to make us feel better. I am going to type it as he explained it to us:

"Think of 7 of your best girlfriends. There are 8 of you all together, you plus them.

All of these women have or will concieve a trisomy baby at some time in their lives.

7 out of 8 will miscarry very early on in pregnancy, at about 4 or 5 weeks. Sometimes they didn't even know that they were pregnant. 1 out of the 8 (you) are lucky enough to meet me.

Now I know you don't feel lucky. You are thinking "Why me? What did I do wrong? What is wrong with me? Why couldn't my child be healthy?" It is EXACTLY the opposite. You are the special one. You could give this baby life when other women's bodies wouldn't. For some reason, your body was strong enough to give this baby life. We don't know why, maybe it's because you take excellent care of yourself. But, we do know that this baby is not a mistake. Your body kept a pregnancy that most women's bodies could not."

This advice was so comforting to us. I saw our situation in a very different light. I always knew that Kinsley was special and that she wasn't giving up without a fight, but I never gave myself any credit in this. I kept thinking there must be something wrong with me! Our doctor really reassured us that we did nothing wrong throughout our pregnancy.

I wanted to also list two books I have found helpful during this journey. These are excellent resources for someone who is carrying a child to term despite a fatal prenatal diagnosis.

Safe in the Arms of God by John F. Macarthur - This is an amazing book for anyone who has lost a child, whether through miscarriage, stillbirth, or early infant/child loss. It is a Christian based book drawing from the bible for references about what happens to our children after death.

A Gift of Time -Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief
Amy Kuebelbeck and Deborah L. Davis, Ph.D.  - This is an awesome book that could be for believers and non-believers. It supports the decision to carry to term and gives first hand experience of many parents who have made the same decision. Loved this book.

Thank you guys for reading and for being a part of this walk with us. Bless you all.