Memorial Information - Updated 10/11/12

A memorial service held for Kinsley Davis

October 23, 2012 at 4:00pm

Located in the Student Room at Central Christian Church

 Gilbert, AZ off of Germann and Lindsay Rd

Guests wear pink, purple, or white. No black. :)

No children please.

**In lieu of flowers, we ask that guests bring a stuffed animal that will be donated in Kinsley's name to Ryan House.**

Thank you and God bless you.

Our Angel In Heaven

Psalm 34:18 The LORD is close to the brokenhearted and

saves those who are crushed in spirit.

 

 

 

Kinsley Marie Davis was born on October 3, 2012 at 4:06pm. At only 35 weeks, she weighed a healthy 6lbs and 11oz and was 18 1/2 inches long. She spent 39 minutes with her mommy and daddy before going to be with Jesus. Her short life will never be forgotten. We are forever changed by the time that we spent with our little princess. Rest in peace, beautiful daughter of ours.

35 weeks

"There's a raging sea right in front of me. Wants to pull me in, bring me to my knees. So let the waters rise if You want them to. I will follow You. I will follow You." -Mikeschair

I know the storm is just on the horizon. The winds have started whistling and the dark clouds creeping closer. There is so much at stake. I have found my shelter with the Lord, been blessed with loved ones ready to perform disaster relief, and now we wait. That's all there is left to do. I can only worry about today and the strength required to get through another 24 hours. Anticipating the wreckage that awaits us is too much for today's worries and fears. There is enough to think about for today alone.

Even with knowledge of the coming disaster, in recent weeks there was mostly a profound sense of peace in my heart. God provided me with the answers needed to get me by each and every day. Every day that passed there was just enough strength to push through one hour at a time. When signs of the hurricane started sweeping in, panic instantly took over. The serene calmness was gone.

One week ago I started having labor symptoms. They were so mild that my doctor and I both agreed it wasn't really anything to worry about yet. I tried to change positions, drink large glasses of water, walk around, take a bath...but nothing seemed to make the contractions go away. They weren't painful, just regular - every 3-5 minutes regular. I went to bed thinking it was probably a false alarm.

Startling pain woke me up 4 hours later. Contractions I had to breathe through, lower abdominal cramping, and a dull lower back ache. I thought, "This is it. She is coming." The contractions continued like that for a while and then they stopped being as painful. Other symptoms continued, but I was able to fall asleep again when the contractions lost their strength. I woke every 30 minutes or so to pain and hardly slept at all. The day continued like this. They weren't stopping and my whole body ached. These events ended up not being true labor. Many of those symptoms are still continuing and the growing pain in my body makes it hard to not think about everything. The way my body hurts is a vivid reminder of reality.

I feel we are back to square one, but now with a sense of frustration. For months, I had been waiting in fear for the moment I would go into labor. Thinking that I was in early labor and with my body certainly not telling me any differently, I was forced to face this fear. There came a peace. We felt as ready as we could. Now it is back to the waiting. The storm clouds went away and the sea looks calm again. Now what?

We have also been contemplating about new choices we have to make. We are trying to be in tune to what is best for Kinsley and ourselves. Kinsley is not currently head down. We pray she wiggles in the right direction, but if not, we are fearful about her delivery. A breech delivery (especially for a first time mom) is tricky and the baby can get stuck, possibly passing away in a less than comfortable death. We can try to have the doctors turn her, but this is not always succesful. It is also extremely painful and risky for mom and baby. Even if she were to get in the right position, a lot of the time they flip right back into their cozy position. We are faced with delivery options as well: whether to schedule a c-section or induction at 39 weeks or wait until labor starts. I have read trisomy babies do not always naturally induce labor. We are praying on all of these choices. Please pray that God will give us guidance and that we can make the right choices for our family.

 

I think this is the eye of the storm.

Ultrasound

Last week we saw our little angel for the first time since her diagnosis in June. We weren't sure if we would do more ultrasounds in our pregnancy, but eventually agreed if Kinsley would fight to 32 weeks then we would see her again to check her growth and see if there are any changes in her health. I am so glad we made this decision.

The ultrasound technician we had was really sweet and caring. She gave us the ultrasound experience we missed before. At our last appointments, the techs had been quiet and avoided saying much about our baby. This woman, however, treated our Kinsley like any healthy baby. She said how beautiful our girl is and showed us her whole body, even the 'imperfect' parts. She was great at explaining what we were looking at and really treating our baby like a baby instead of a medical disaster.

Kinsley is about 4 1/2 pounds, which the ultrasound tech said was about the 48 percentile. That means our little girl is growing rather well, considering all of her challenges. She also has a bunch of hair on her head that I cannot wait to touch. Kinsley let us see her face for the very first time. She was stubborn to start out with but then finally moved her arms away and let us see her beautiful, perfect face. I can't believe how cute she looks, with her big chubby cheeks.

Kinsley's problems still look about the same. Her heart, brain, and hernia have not been healed but we know healed or not, she is perfect the way she is. We just wish her healthy so we can keep her with us after birth for a long, long time. I am so excited to meet her, even though that means the beginning as well as the end.

I just wanted to share with everyone. Please be praying that Kins holds on until her due date so we have plenty of time with her and she has lots of time to grow. We are 33 weeks, going on 34, and are so blessed for the miracle that is still alive and well in my belly.

Finally figured out how you can "follow" blog.

UPDATE-If you are trying to do this on a cell, you have to scroll down and click the view full site link first! :)

I already posted today but I promise this is quick!
Many have mentioned that they wish they could get an update when I post on the blog. I finally figured it out! haha.

You can do either of the below options:
a. Click at the top of the page where it says to follow the blog or become a member
(I think you have to have a gmail, yahoo, or twitter account for that option)
OR
b. You can enter your email on the right. It's a text box located above where all the blog posts are listed and it says "follow by email."

Thanks! :)

Feeling blue...

Philippians 4:13

I can do all things through Him who strengthens me.

 

 

The verse above has become my mantra. I repeat it to myself constantly in an attempt to find the strength to get through the day. I haven't written in quite some time, as many of you have pointed out and asked me about. I wish I could find a beautiful, eloquent way to write about why I haven't posted anything. However, I can't seem to artistically put together these words. This post is going to be a very raw, uncensored me, but I think it is important that I include that version of me. It is a very real part of this time.

 

I am one of the most self critical people I know. I have always had a low self esteem and it has gotten in the way for much of my life. I always expect better from myself and never feel like I have done enough. My lack of confidence is my biggest flaw. Ironically, I just criticized myself by saying that. The reason this is important is that I put myself through a lot of stress to try to be a good person and strong Christian. There have been many times in the past 2 1/2 months when I've felt guilty having feelings of sadness, pain, desperation, and hopelessness. I won't allow myself to be human.

 

The pressure I put on myself to be strong and positive has helped me through this time, but it has also made me avoid many of my feelings. I believe that I need to trust in God and believe He is what He says: one who heals, has compassion, and never abandons. I believe in the power of prayer. I believe that only God's strength and loving hand will lead us through this nightmare. All of these beliefs have made me feel like it is not okay to be sad, to be mourning, and to feel all of these horrible emotions. However, I have been going about that all wrong. Pushing my emotions away is not going to be the best thing and it certainly isn't what God wants me to do. I used to worry that if I felt those emotions, it meant I didn't trust God, but ignoring my hurting heart is not what it means to trust in God either. He understands our pain and suffering and it is okay for me to lose it sometimes.

 

My anxiety has been building and sometimes I feel like I am going to suffocate from this weight on my chest. Being a planner means that in our situation, I feel completely helpless, because let's face it - I am. I cannot change what is going to happen. It is completely out of my hands. I have also had this looming sense that Kinsley is coming sooner rather than later. This feeling has just started in the past week and I do not know if it is maternal instinct or just pure fear. We are closer to the end than the beginning, at 32 weeks pregnant this Friday. I know that at this point in my pregnancy, it could be any day now and even with the time I have had to accept this, I am still not ready to say goodbye. My heart aches when I think about it. I know that there are always miracles and I believe in them with all my heart, but we just don't know if that is God's plan for our baby.

 

When I say I trust God, I truly mean I trust His decisions and know that someway, somehow, in a way I will NEVER understand - He will do what is right. It is a bigger plan than I can understand. I certainly don't think I will ever even accept it. But, I trust Him to carry us through and give us the courage, strength, and support we need to keep going. He will give us enough energy to keep dragging ourselves out of bed and going to work and living a normal life when it feels like we have been completely destroyed. He will give us the strength to build our marriage and not let it fall apart in a time where it is so easy to grow distant and even angry at each other. He will provide us with the means to survive when it feels like our hearts are dead.

 

I think I need more support right now than I have before. Please don't stop asking about us and checking in. Please know that we ache for the compassion of those who love us. I know it is hard to know what to say and how to say it, but it isn't about what you say - it's about letting us know you're thinking and praying for us. It may not seem that way because I know I have distanced myself from many of my friends and family lately. I have just kind of become a loner because of the less than positive feelings I have had lately. Even though it may seem like we want to be alone, we need love more than ever.

 

Thanks for reading this less than uplifting post. I can feel myself regret it before I even publish it. Again, self criticial is my middle name :)

 

 

 

A teeny tiny hat we bought for baby girl to wear in the hospital.



 

 

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.

26 Weeks - PRAYER REQUEST!

We are asking for your prayers!

Right now, we are praying for the following:

1. Complete healing of dandy walker, diaphragmatic hernia, t13, and tetralogy of fallot

2. For Kinsley to be born alive, healed or not.

3. Strength and comfort for our family.

We would like to form a mass prayer chain for the week of 7/30/12-8/5/12! If everyone would be willing to pray for us during this next week, we would love to get a count to post here! We know that there is power in prayer and that the more people that are praying, the better! Feel free to forward this post to friends, family, church, etc. to get the request out there! Email us if you want to be included in our count. :)mrskatydavis09@yahoo.com

(You may email me here for anything, by the way. If you are going through a situation like ours and need someone to talk to, please do not hesitate to email!)



Today marks Kinsley's 26 week in-tummy birthday. I can't believe that so much time has passed already since our ultrasound when she was diagnosed with everything. It has been 5 1/2 weeks since the diagnosis of her anatomical problems and 3 weeks since the amnio results revealed our sweet girl has full Trisomy 13. I wasn't even sure if I would make it this far at all! She isn't giving up without a fight. That's my girl.

We have received many questions concerning exactly what Kinsley has been diagnosed with. I thought I would share with everyone in a little more detal.

• Rocker bottom feet - The normal development of bones in the human foot is disrupted. In a typical foot, the middle area is concave and creates an arch. In rocker bottom feet, the abnormal pattern of bones actually make the bottom of the feet bend in the opposite direction, appearing like the bottom of a rocking chair or rocking horse. Around 85% of babies with rocker bottom feet have an abnormality in their brain or nervous system. If the baby survives, surgery can correct this skeletal condition.
• Tetralogy of fallot -A congenital heart defect with 4 main characteristics: 
• Large ventricular septal defect (VSD) - hole in the septum that separates the two lower chambers of the heart. The hole allows oxygen rich blood to mix with oxygen poor blood.
• Pulmonary stenosis - pulmonary valve cannot fully open. The heart has to work harder to pump blood through the valve and as a result, not enough blood reaches the lungs.
• Right ventricular hypertrophy - Muscle of the right ventricle is thicker than usual. Occurs due to pulmonary stenosis. 
• Overriding aorta - The aorta is the main artery that carries oxygen rich blood from the heart to the body. In TOF, the location of the aorta is not in the right spot. It is right above the VSD. As a result, oxygen poor blood flows directly into the aorta.
• The outlook for this is not good. Not enough blood is able to reach the lungs to get oxygen and oxygen poor blood circulates the body. There is surgery to correct this and often times, many surgeries are required throughout the individual's life.
• Dandywalker syndrome - A congenital brain malformation involving the cerebellum (area of the back of brain that controls movement) and fourth ventricle. A major problem that occur is increased pressure and fluid buildup in the brain. Individuals with dandy walker often require a shunt to be placed surgically to help drain excess fluid around the brain. Some problems that are caused by dandywalker include seizures, vision loss or absence, jerky movements, and problems with the nerves that control breathing, neck, and eye movement. The severity of dandywalker greatly varies from individual to individual.
• Diaphragmatic hernia - A birth defect that occurs in the diaphragm. An opening is present in the muscle that separates the abdomen and chest. As a result, our baby's organs have all moved up and are in the chest cavity, resulting in restricted lung development. Surgery must be performed shortly after birth and recovery largely depends on how developed the infant's lung tissue is.
• Restricted lung development
• Enlarged kidneys

With a very long list of serious health problems stacked against her, we know that Kinsley needs a miracle to survive. Unfortunately, we were told that our daughter is not a candidate for any surgery due to her other conditions. She would not be considered stable to undergo any surgery due to the other conditions she has. Many of her ailments all are related to oxygen (diaphragmatic hernia causing restricted lung development, tetralogy of fallot, and dandy walker), it does not look good for her once she needs to start breathing on her own. We will be talking more with our neonatologist about all of these things on Wednesday. He will help us to prepare (the best we can) for what to expect and all of our treatment options.

We are still just praying that God will work a miracle for our family. I have started to accept that maybe He already has given us a miracle to allow her to still be with us today. Every day, more people join us on our journey and open their hearts to us. I also have heard people testify that our story has brought them closer to God and their family. Josh has even expressed that he has accepted Jesus and wants to be baptized. How wonderful is it that God used Kinsley to help her daddy make such an important decision?


Thank you guys so much! We would love to hear that you are on board to pray with us for next week's prayer drive! Let's try to get as many people praying for Kinsley as possible!

Guilt, Anger, and Peace

2 Timothy 1:7 God has not given me a spirit of fear, but of power, love, and a sound mind.

There is a war waging in my mind. Recently I have had a significant struggle with feeling guilty. Our doctors have told us that genes played no factor in Kinsley’s diagnosis. There was nothing we could have done to prevent this. It is something that just happens sometimes, for no known reason. All of this information should make for a closed case. Unfortunately, I still sometimes feel like I have failed my child and I am somehow responsible for her illness. I can’t seem to shake the feeling that this is my fault even though I know I did everything you “should” do before becoming pregnant: eat right, exercise, take prenatal vitamins. I abstained from drinking, smoking, and other risky behaviors during my pregnancy.

Then there are the questions of, “Why us?” and “Is this even happening?” I have had my times where I have been upset with God and just feeling abandoned by Him. He knows how much this baby means to us. He knows all of my fears about not having children. Women much older have healthy babies. Women who don’t even want their children have healthy babies they give away or choose to abort. Some even do drugs or smoke throughout pregnancy and still have perfectly healthy children! Why can't my baby be so lucky? I’m not saying I would wish this upon anyone else, but I still feel angry about it on occasion. I guess it just goes to show that God gave us this baby for a reason and He knew that we could handle it. He knew we would choose to let her live out her life and love her with every piece of ourselves. He only gives us circumstances that we can handle. I know I can’t do it alone.

We have an amazing support system. I have to say that through this time, I have gotten a lot of comfort. God, first and foremost, has been with us every step of the way. There are times I know He was literally picking me up out of bed and washing away my pain with a sense of peace. We have also been blessed with such amazing family and friends. I have to say thank you. Even the smallest gestures, like checking in and asking how we are doing to the larger showings of support, like bringing us dinner and sending cards, have made such an impact on us. Thank you to everyone who has been praying and thinking of us. I cannot express how important you all are on this journey with us. Thank you again and again.

Today we had a prenatal appointment with our wonderful, supportive doctor. We are very happy that we have a doctor who agrees with our decisions and truly feels compassion for our family. Today we heard Kinsley’s heartbeat, strong and steady as usual. We had discussions about meeting with a neonatalogist to discuss expectations at time of birth and to help us write a birth plan addressing our wants during and following delivery. There are a lot of decisions to be made and it is rather overwhelming to think about without talking with an expert. The highlight of our appointment was that our doctor allowed us to see Kinsley on ultrasound! It was such a great moment to see her moving around and being a happy, “healthy” girl. She was wiggling around like usual, moving her arms all around the place. It is moments like that where I no longer feel any guilt. It is all washed away. I know that we have done everything we can to honor our daughter’s life and to cherish her every step of the way. God will take care of the rest.

"I Will Carry You"

Psalm 139:13-16 For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.

Proverbs 3:5-6 Trust in the Lord with all your heart and lean not on your own understanding; in all ways submit to Him, and He will make your paths straight.

Jeremiah 1:5 "Before I formed you in the womb I knew you, before you were born I set you apart.

Making the decision to continue in our pregnancy was not an easy one. It was crystal clear and I knew immediately what we would do, but it still was not a choice that came easily. I have always been pro-life and knew firmly I personally would never abort, regardless of the circumstance. The moment at the doctor's office that the specialist started talking about the choice to terminate, my heart dropped knowing I was being faced with such a decision. We were talking about letting go of a child Josh and I want very much. I half heartedly told the specialist that we weren't planning to go that route, only to be told how difficult this would be for us to continue. Way to kick us while we are down.

We received similar reactions from some people. It must be hard to imagine what you would do in this situation. Maybe not. Maybe you think that you know exactly what you would do and there would be no question. You would terminate and never look back. Maybe you would make the choice we have. All I can say is, you really never know what you will feel until you are living in those moments. You suprise yourself. A few people encouraged us to terminate or seemed suprised that I would continue to carry such an imperfect fetus. My face gets red when I write that. My child is perfect. She may not be perfect by any medical standpoint or worldly view, but she is beautiful in our eyes and God's image. Fortunately, everyone that matters agrees and has supported our decision.

Knowing what I would do and making that decision was hard for me to swallow. I turned it over in my head so many times. My heart and soul went into the choice to give Kinsley life. My brain wasn't convinced. The logical side of me was mad that I wouldn't consider the alternative. Thinking about the physical and psychological stresses of carrying to term and leaving the hospital empty handed seemed so unfair. I am a planner. I plan everything in my life and am very organized and precise. Having this uncertain hand dealt to me eats at me. I can't plan towards what might happen. I don't know even on a day to day basis what can happen. Will she pass away in the womb and we will find out at an appointment? Will I need to be induced at that time or will my body naturally go into labor? Will she live through the whole pregnancy and be able to spend time with us? Not knowing if Kinsley will be strong enough to make it through labor and that I may never hold her alive tears me apart. I had overwhelming fears that if she is born alive, she could live a life of suffering. There are too many uncertainties that I can ask and worry about, but I can't live in that dark place. I knew I was taking the harder road, but it was the one I felt convicted to follow. It was the only one that brought me peace. I had to put it in God's hands and let Him decide.

I don't have any doubts in my heart as I type this. I know that keeping Kinsley is the best decision of my entire life. Being told your child is alive but won't be for long is shattering. The emotions that go along with this are so hard to comprehend and explain. I don't want to lose my daughter! Why would I want to let her go any sooner than I have to? Why live my entire life saying "what if?" I couldn't and I won't. Maybe she will even be one of the lucky few to make it past the first few days in the hospital. Maybe she will pull through and suprise everyone. Maybe she will heal enough, stay alive long enough and be strong and stable for corrective surgeries. Maybe there will be a miracle. If not, and if the doctor's are right, I still am sure my baby deserves life, whether on this Earth or in the womb. Who am I to say otherwise? She will go when it is her time and I will see her again one day. Until then, we are enjoying mommy, daddy, baby time.

23 Weeks Pregnant Tomorrow

Before we found out about Kinsley’s diagnosis, this pregnancy could not have been going any slower! Who wants to deal with all the sickness, exhaustion, and weight gain? I just wanted our baby and NOW! Josh and I were very anxious for the arrival and wished we could speed up the process. We would talk about all of the things we couldn’t wait to do: hold our child, play guitar and sing to him/her, make our baby giggle, teach walking and talking skills, watch as he/she grew into a kid, teenager, adult... Josh would talk about all of the things he would do with a son or daughter. When we found out we were having a girl we were beyond overjoyed, even though we had said all along we wanted a boy first. My whole pregnancy Josh became a proactive daddy, learning how to care for me during labor and our newborn child after birth. We had been doing lots of reading trying to prepare for the day we would be parents. We couldn’t wait for that time. I just kept saying, “I want my baby now! Why can’t we fast forward?” Days seemed to go so slowly and it seemed like I had been pregnant for much longer than 3, 4, 5, (now almost 6!) months. We acted like two impatient kids on a road trip. “Are we there yet? Are we there yet? What about now?”

Now each day with Kinsley is a lot different. It is difficult to find the words to explain what I am about to. Time does not really measure the same way. Minutes seem to drag by and every hour feels like an eternity. It probably doesn’t help that I am on summer vacation from work, trying to deal with all of these things without a real routine in place. It’s as if time has stopped and our world is playing in slow motion around us.

Despite this, I feel like time with Kinsley is passing too quickly. I am hanging on every moment with her as it flies by. The world is at a crawling speed, but our time as a family is on fast forward. We planned for the next 60 years with her and now are faced with maybe only having today. Maybe God will grant a miracle. I know how easy that would be for Him to cure her as Jesus did the blind, the lepers, and even the dead. Maybe He will use Kinsley to reach millions of people in disbelief that the medically impossible can happen with the power of God. Healing is nice to think about every now and then but I know it may not be in the plan. I have to accept whatever happens. Miracles are something to hope and pray for, but never expect. If she does pass as the doctors are guaranteeing, I know He will have used our baby in big ways, even if I never see them. I know she will be in heaven waiting for us, but it isn’t the same as holding her and feeling the warmth of her skin. It isn’t the same as having her here with us.

This entire topic brings me to something I have been thinking about. I read a question from someone that asked if a prenatal diagnosis of fatal conditions like Trisomy 13 is harder than carrying without ever knowing, then losing a child you thought was healthy. I think it is a blessing to know this news ahead of time. If I had never learned Kinsley’s time is limited, I would have continued to be impatient in this special time. I never would have learned to enjoy the small stuff. She is our first baby and has a very special place in our lives already. Josh and I talk about what we think she is like. We are learning some things about her personality - like she enjoys certain types of music over others. Every movement of this pregnancy is such a gift now. Kinsley is especially active after I eat or right before bedtime. I cling on these moments and never want them to end. When I feel her kick, I become still and pray to feel it again. I pray it won’t be the last time. . She has held on this long. She is a little fighter and has defeated the odds already! I know she is stubborn like her mommy and strong like her daddy to still be with us today. God, please allow us more time with this little angel-even if it is just one more day. I’m not ready to say goodbye.

We took this picture on our first family vacation to San Diego last weekend.

And Baby Makes Three...

It has been two weeks since our worlds were turned upside down. It really is true that everything can change in just a matter of seconds. All of your hopes, dreams, and plans need to be reevaluated. When we received the news, the world seemed to come to a screeching halt. So many questions and fears came to mind, but mostly just disbelief. Since then, I have gone through every emotion that exists, sometimes within just seconds of one another. This blog is to follow our story and to hopefully help someone out there who needs it. If it reaches even just one person’s life, I know that it will have been worth it to share. After all, hearing and reading other people’s testimonials has been a major comfort to me.

Let’s go back to four months ago in March. That is when everything started. One positive pregnancy test. Disbelief. Two positive pregnancy tests…then three…then five. I was so surprised, elated, shocked, scared, confused, and amazed! Over the years I had convinced myself that I could not have children. I had a few reasons behind this concern, but mostly it generated out of fear. Being a mother and having a family was always top of my list in life. The thought of that not happening always terrified me, and over time I just believed it. Finding out we were pregnant was such an amazing moment, especially given my fears.

Everything seemed to be going great with the pregnancy. All tests came back perfect and there was no indication anything was wrong. I had the normal morning sickness (ahem, all day…), weight gain, a few random mood swings, just joyful pregnancy stuff! When I started to feel our baby move, everything became even more real. Josh and I were so overwhelmingly happy. We had started thinking of names, arguing over nursery themes, and talking about all of our hopes and dreams for our baby. Over the moon happy.

At our routine 20 week ultrasound, things just seemed off. The ultrasound was taking an extremely long time and the technician was taking a whole lot of pictures. This is our first pregnancy, so I thought I was just worrying too much. I figured it could be normal for it to take so long. We tried to relax and not think anything negative and just enjoyed our time seeing our baby. She announced that we were having a baby girl! What a huge shock. We were sure it would be a little man. Don’t get me wrong - we were psyched about having a little Katy running around and my dreams of bows, dresses, and tea parties started to swirl in my head. We saw our sweet little angel’s face and just marveled at her little nose and cheeks. We joked that she was shy or stubborn, as she continuously put her hands in front of her face and wiggled out of our sight.

At the end of the ultrasound, our nurse practitioner told us that unfortunately the ultrasound they have just wasn’t giving them good enough pictures. They wanted to send us for a level II anatomy scan with a specialist. She said that there were two concerns - our baby girl was measuring a little small and that her umbilical cord appeared to be incorrectly inserted into the placenta. I called the specialist’s office on the drive home and set up an appointment for the next day. I worried all throughout the rest of the day. What if she is born premature? What if I need a c-section? What if she can’t gain enough weight and is born small? What if she is not getting enough nutrients? My mind wandered. Little did I know, these were the least of our concerns.

The next day at the specialist replays in my mind all the time. Another ultrasound that just seemed to take way too long. A few side comments that didn’t sit right in my stomach. An excessive amount of pictures of my baby’s heart and brain…I was nauseated with worry by the middle of the 2 hour ultrasound. The specialist came in, took more pictures, and looking at me asked, “Katy, tell me what all you understand about what is going on with your baby.” I felt like I swallowed a pit. I looked at Josh in panic and looked back and managed to say “I know she is small and something is wrong with her cord.” The specialist didn’t say anything for a few moments and then proceeded to tell us that our daughter had “several significant problems with her anatomy.” The tears came as I tried to listen for more. The specialist went on to start with her brain. She could barely say two sentences before I lost it. Josh helped me to regain myself and the specialist talked about our baby’s long list of problems…a dandy walker abnormality in the brain, tetralogy of fallot, a diaphragmatic hernia…the list went on and on. The question of terminating pregnancy came up, stating our baby’s problems on a list of 1-10 are a 10, that it would be an uphill struggle, with no chances of surgical corrections, and that most people would choose to terminate. After an amniocentesis, we learned our baby has full Trisomy 13, a syndrome that happened completely by chance during conception. Some cases result because a parent is a carrier, which wasn’t the case for our daughter. Her disabilities were caused by the T13, a problem that is deadly all by itself.

Trisomy 13 is considered “incompatible with life.” Most of these babies are miscarried or pass away in utero. If they are born alive, the median life span is 2.5 days. Some of these children make it longer, but a large percentage pass away before a year of age. This is not a very common syndrome. I can’t seem to find consistent information on how often it happens, but many sites say 1 in 10,000 births. To be part of that tiny percentage - especially considering that I do not even have the risk factors: genetics, increased maternal and increased paternal age - was mind numbing.

There was never a question for us about what we needed to do. I knew in my heart what was right for us, our beliefs, and our little girl we have named Kinsley Marie. Although in many ways, it is the harder road, it was the only one that I could live with. I have made the decision to carry my daughter throughout pregnancy and care for her as I would any child. She is my first baby and I want to mother her in every way I can, even if it's not in the ways I had planned for. We don’t know what is going to happen. Every day with her kicking and squirming is a gift from God. We pray for miracles, knowing that He can grant them if it is His will. We pray for the strength, perspective, and wisdom to endure this heartache. The only thing that I know for certain is that Kinsley is my daughter and that she deserves to live, so I am “Keeping Kinsley” as long as God will allow.

This blog is for anyone whose child has been newly diagnosed with T13 or another illness, people who have been through it or are currently going through it. It is also for friends and family who are supporting us in this time. It is even for strangers who maybe can learn something about life through this story. Mostly, it is to get Kinsley's story out there and change someone's life somehow. This was an extremely long post to start off and I'm sure future posts will be much less time consuming for those of you who would like to follow us on this roller coaster.

Pictures from the gender reveal party we had the night of our first ultrasound. <3