Baby Kassidy Johnston's Story

A story of carrying a baby with a fatal diagnosis to term. Anencephaly is a neural tube defect in which prevents the skull from forming.

Still healing…

I woke up in tears this morning upon realizing that the 5th of the month had come and passed…and I didn’t even realize it was Kassidy’s 8 month birthday. I have been so preoccupied lately with packing and moving from our home that we recently sold, and preparing for baby Steven and it didn’t dawn on me that it had been an entire eight months! I paused for a moment and thought back to Friday, July 5th. I remember thinking on that day that I wanted baby Steven to be born in exactly 2 months, on September 5th, so that he was exactly 10 months behind his sister – but in an odd way, I didn’t have the separate thought of Kassidy’s birthday. I stopped crying when I knew this wasn’t a mistake. Kassidy wanted me to have a happy thought instead of a sad one that day.

At work, my office manager emerged from a close-door meeting with a woman I had never seen before. I was introduced to my replacement! I would, in a matter of a few weeks, be a stay-at-home-mom…and my work was looking for a new coordinator for me to train before I left. It all seemed overwhelming. Am I really that close to having my rainbow baby? It’s a weird feeling that I wouldn’t work anymore, and instead have my own healthy baby at home. It’s a dream come true!

This past Saturday, Stevie and I attended an Infant Baptism Class for when we have Steven III baptized (which will most likely be September 28th). Again, I felt overwhelmed with emotion knowing what we were getting ready for. The Baptism Coordinator heard about Kassidy, and that we had baptized her in the hospital ourselves. He offered to make Kassidy a baptismal certificate! We are beyond grateful, and look forward to receiving this.

The past few months, I’ve been dealing with conflicting information from Kassidy’s cemetery on what decorations I am allowed to lay at her headstone. It’s a long story that I’m not going to share here, but that (as silly as it is) has been my main struggle emotionally. I wish I were able to leave gifts for her without the cemetery throwing them away. From what I’ve read in the cemetery’s regulation booklet, I can’t leave anything unless it’s a holiday or if it’s stored in an in-ground vase. At the time of Kassidy’s burial, we declined the in-ground vase because I felt like it was invading her resting place. It was a personal decision. Now, 8 months later, I feel like I am being forced to elect for a vase JUST so I can leave flowers for my daughter. I never thought I wouldn’t be allowed to leave a simple plastic windmill for her. Please pray for me to come to acceptance and peace with their regulations…

Here is a picture from last weekend at San Diego – I was 28 weeks along.

I am a mother of TWO.

This past Friday, I went to get my nails done with a bachelorette party. Upon sitting down for a manicure, the woman noticed my pregnant belly and began to ask me questions. “Is this your first?” I paused for a moment, I knew this question would come at some point since I was showing. I knew how I wanted to answer…”No, this is my second, but my first boy.” It felt so natural to answer this way. Luckily she didn’t have many follow up questions such as “How old is your daughter?” etc…I’m not sure how I would have answered that.

Today is a big day for Stevie and I. We are placing our first home up for sale. The anxiety that comes with selling a house is much more than I expected, maybe because I’m pregnant and want to nest and have the peace of mind that I am ready for baby Steven. I feel so out of control at the moment! I literally have to keep telling myself that it’ll be okay. We are hoping to move about 20 miles northwest of where we are now, to be closer to family. Moving back will give us other opportunities with Stevie’s work, allow Stevie to begin playing Rugby again (his favorite!) and will overall be a smart move for our little family.

Stevie and I are driving to Oklahoma next week to attend my cousin’s wedding. We leave the night of the 4th, which means we will not be here for Kassidy’s 7 month bday on June 5th. It’s tearing me up inside. It’s unrealistic for me to expect to be able to see her every month on the 5th…so I know I need to calm down. June 5th is also the 1 year anniversary of finding out she had an omphalocele…or basically finding out something was wrong. June 8th is the 1 year anniversary that we found out she had fatal anencephaly. It’s gonna be a tough week. Please pray for us.

Kelsey

6 Months Ago

Kassidy turned 6 months in heaven on Sunday, May 5th.

I woke up overwhelmed with emotion. I cried for a good solid hour before I could function enough to do things around the house. Sunday also happened to be my Dad’s 50th birthday, so I made a cake for him that Stevie and I brought over to his house a few hours later. Being with my family was just what I needed. We laughed hysterically at his funny birthday cards and my little sister, Karis, ( age 8 ) felt baby Steven kick. At one moment I thought about how I’d been hysterically crying earlier that morning and now I’m laughing. Do you think God planned it so that Kassidy’s 6 month birthday was shared with my dad’s? To help me get through it? It seemed to work out nicely.

After my dad’s birthday celebration, Stevie and I went to the cemetery to visit Kassidy. We don’t get to go there that often together, since we live so far away and Stevie works near our home. Most of the time when I go, it’s after I get off of work, so I am alone. We stood there for a bit in silence…then we talked. It occurred to me that the time that gone between discovering that she had anencephaly and then saying good bye to her was exactly 5 months. It had now been 6 months since I held her. Those 5 months preparing to say goodbye seemed like 5 years, and these 6 months that had passed felt like 6 minutes. Stevie talked about how his Dad would bring photos of the family to his grandpa’s grave, and that he thought we should bring Kassidy photos of us and baby Steven when he is born. That will be one of our first tasks in late September.

Some surreal moments for me the past few days: 1) Contacting our church about preparation for baby Steven’s baptism. It was exciting to begin to plan for it, when we baptized Kassidy, it was in the hospital, so this will be entirely different and a moment we can share with our families.  // 2) Researching pediatricians. Again, I never got to do this with Kassidy. // 3) Telling my boss that I’d be leaving in September to be a stay-at-home-mom. I can’t wait to spend all of my time caring for this little boy we’ve waited for for so long! I’ll cherish every late night feeding and diaper change! // 4. Discussing selling our home to buy/rent a new place closer to family, work, church etc. Being closer to everything will make life with a newborn so much easier.

We appreciate the continued prayers! Please pray for me during Mother’s Day on Sunday. We are attending an annual Mother’s Day Brunch with Stevie’s family and I’m already emotional thinking about it…

Kelsey

What’s it like for us today? 4.26.2013

Baby Steven William III: Our Rainbow Baby

What are our days like now? We are approaching Kassidy’s 6 month birthday/angelversary, as well as the midpoint of my rainbow pregnancy. Most days are filled with happiness – planning for our son, feeling his first kicks, painting the nursery, etc. There are still quite a few days of sadness associated with missing our daughter. There will always be days like those. I find myself disconnecting from my online anencephaly support groups, as they are filled with new angel babies and pictures that are all too raw with emotional loss. From time to time I will check in, and see that more women are blessed with rainbow babies of their own. This warms my heart.

Last week, I visited my previous workplace and saw friends I hadn’t seen in months. One woman, in particular, approached me and asked about Kassidy. We talked for a bit, I showed her pictures of Kassidy on my phone, and I thanked her. “Thank you for talking about her,” I said, “Most people pretend it never happened.” It was so refreshing to be treated just as any new mom would be.

I visited Kassidy’s grave yesterday, I find myself talking to her like I would talk to any regular person. I usually begin by saying “Hello pretty girl,” as I sit and begin to wipe away dirt or grass that has blown onto her headstone. Sometimes when I’m there, I don’t even cry. Our baby boy has already become very healing to our hearts. It’s easier to visit Kassidy than it ever has been.

At my doctor’s appointment this week, I found that I’ve gained ten pounds! My doctor is happy with this, for me it’s shocking – I never gained anything with Kassidy. I believe this was due to stress, no necessarily her condition. With baby Steven, it’s easy to just roll with the punches and be calm every night thinking about September when he will be in my arms. I’m still having trouble sleeping, I usually wake up and stay up about two hours every night. Dr Connors says this is a combination of both my grieving and pregnancy. I hope it eases up before September because I know I won’t sleep much with a newborn. We’ve scheduled a fetal echo test at the specialist for May 31st, when I am 24 weeks along. I mentioned to Dr. Connors that the specialist wants me to return in my 3rd trimester to get checked, but I wasn’t sure why. Dr Connors told me that it would be smart, because of my history and that I will always be at a higher risk for certain defects. So that means two more visits with the office where I got Kassidy’s diagnosis. I’ll do what they recommend, I can’t help but wonder if every subsequent pregnancy will be the same.

I have a desire in my heart to work on and finish my book about Kassidy – I think about things I want to add every day. However, at night when I get home I find myself choosing to do other things aside from pulling out my laptop. It dawned on me – I’m avoiding the emotions. Even just this morning when I was fighting insomnia – I began to tear up thinking about Kassidy, then I switched my mindset to thinking about Steven and my tears went away. Is this a healthy habit? I’m not sure.

I have been going a bit crazy finding projects to keep myself busy. We are going to complete Steven’s baby registry this weekend, and maybe paint the nursery. I’m a planner, so getting his room arranged will make me feel better and prepared. We are cloth diapering him, so I’ve been stocking up on “fluff mail” a.k.a. diapers and inserts. I get really excited each time I get a package knowing his cute little butt will in those diapers one day. To keep a positive state of mind, I’m considering beginning a craft blog. In September, I will be promoted to a stay-at-home-mom, I’d love to blog about my experiences with cloth diapering, sewing baby items, etc. the only roadblock is that I don’t have internet at my house (and the laptop I have isn’t in a good condition for constant use).

That is all for now, thank you to those who follow our journey!

Kelsey

Rainbow Baby is a BOY

Kassidy is a big sister to a little boy! We feel so blessed with her brother. We will name him Steven William Johnston III after my husband and father-in-law. Baby Steven is showing to be 100% healthy and growing right on track, in fact he is 8 ounces :)

Praises! Praises!

-Kelsey, Stevie, Kassidy and Baby Steven

Kassidy’s Awareness Ribbon

Today I visited the website for Centers for Disease Control and Prevention. I read that in the US, there are 859 anencephaly babies born every year. Additionally, there are 775 cases of omphaloceles a year! Third, there are 1,109 cases of Trisomy 18 a year. T18 was unconfirmed with Kassidy, but this information really puts things into perspective of how “rare” Kassidy is. http://www.cdc.gov/ncbddd/birthdefects/data.html

5 Months Ago…

Happy 5 Month Birthday Kassidy!

I can’t believe it’s been 5 months since I held you, kissed you, and said goodbye to you. I miss you so much!

Love,

Mommy and Daddy (and little sibling on the way)

PS)  Duke University does a variety of studies on anencephaly, and there is a psychological one going on right now that Stevie and I will be participating in. Here are details for other anencephaly parents who may visit my blog:

Researchers at Duke University Medical Center are enrolling women and men who experienced a previous pregnancy with anencephaly for a research study titled, “The Psychological Impact of Pregnancy Loss Due to Anencephaly.” The purpose of the study is to examine the psychological impact—specifically symptoms of post-traumatic stress, grief, and depression—in women and men who lost a pregnancy or baby to anencephaly. Participation in this study involves reading and signing a consent form and completing four questionnaires. 

For more information, or to enroll in the study, please contact the principal investigator, Ms. Heidi Cope, at 919-684-0655 or heidi.cope@duke.edu.

Easter

Easter has become, even more, precious to me. Jesus’ rising is now even more significant . I’ve especially been thinking about Mary, and her pain losing a child. I feel like I can relate more to her loss and recognize how especially amazing His rising is.

On Easter 2011, I was confirmed in the Catholic Church. Guided and sponsored by my husband, Stevie brought me into a entirely new lifestyle and way to believe – which I think was right on my path toward carrying Kassidy as well.

Easter 2012, one year ago, we found out we were pregnant with our Kassidy. I can’t even describe the happiness I felt when I saw that positive test. Stevie was at work, so I rushed to the store to get another test, plus a few baby items that I planned to arrange in an Easter basket and surprise him with. I got another positive test a few hours later. I can’t believe it’s been a year.

So, here we are, at Easter 2013. It’s been a crazy year for us, definitely a tough situation that some couples cannot endure. My beliefs were strengthened and moved us towards carrying a baby with a fatal diagnosis. I don’t know that many couples could have gotten through that, especially without faith. This Easter, Stevie and I were sponsors for my sister-in-law and brother-in-law to get confirmed. During Easter Vigil, I often thought of Kassidy. I thought of her being with us, and glancing back at in-laws sitting behind us, I thought she may be sitting with them since Stevie and I had to walk up. Silly daydreams. Easter morning we visited Kassidy at the cemetery. It’s not very often that both Mommy and Daddy get to see Kassidy at the same time, Stevie works odd hours 20 miles away. We brought her a pink Easter basket with plastic eggs inside. Landscapers had been by, and her headstone was covered in grass and dirt. We each took turns cleaning up her space. Once her things were arranged again, it was perfect!

Stevie and I will be celebrating our 2 year wedding anniversary on June 2nd. I remember last year, just three days before Kassidy’s diagnosis, I told Stevie, “This is our first anniversary, and last anniversary without kids, so we need to do something special!” Sadly, we do have one more anniversary without kids. I’m also scared for Mother’s Day. I am a mother, although my child is in heaven, but I don’t know how others will react around me that day. I expect to be emotional, of course.

I’m basically just thinking out loud right now – but yesterday someone said that this rainbow baby should be my last baby since I have “so much trouble.” It broke my heart. I corrected them and said that Kassidy’s anencephaly was not genetic, but they didn’t seem to get the idea. I’ve done so much research and genetic testing, which has come back normal. I wish people who don’t know much about anencephaly would just keep their mouth shut. It’s a complex abnormality with so many causes, every case is unique. This rainbow baby will not be my last baby.

In about 2 1/2 weeks, we find out our rainbow baby’s gender. We were previously told that it’s a girl, but it wasn’t a for sure answer. I’ve been channeling my thoughts towards that day (April 19th) so I can have something positive to look forward to. I’m probably going to beg Stevie to paint the nursery right away so I can decorate :)

Kelsey

Food for Thought 3.27.2013

I saw this quote posted at church on Sunday and I haven’t been able to get it out of my mind since. If anything, it makes me even more proud to have carried to term a baby with a fatal diagnosis. Having Kassidy and losing her wasn’t part of my plan, but I accepted HIS plan for me.

“It is a poverty to decide that a child must die so that you may live as you wish.”

-Mother Teresa