November 22, 2013 - Life with a baby, after losing a baby

Baby Steven (a.k.a. Little Stevie) is such a blessing. As I've gotten the hang of things with him over the past 2 months, I am reminded what is important in life. I am grateful to have a husband that works hard so I can stay home with this little hunk of love all day. Everything he does is amazing, and when I notice him do something new for the first time, I get so excited!
Steven's first Thanksgiving is next week, and then Christmas! Yesterday we bought him a blue stocking that reads "Baby's First Christmas." It is hanging right next to Kassidy's stocking (Santa fills hers with items we take to the cemetery, garden decor and stuffed animals).
This time last year, I was sad at the holidays because I knew Kassidy should be with us. This year is completely different. I feel happy and know Kassidy is the reason I can be happy now - she looked after us so that we had a healthy baby this year. 2012 and 2013 are polar opposites. I wonder what 2014 will bring!

 

November 5, 2013 - Kassidy's 1st Birthday!

First of all, wow- today was terribly difficult to go through. It felt like I relived her birth and passing all over again. I woke up to messages from friends wishing Kassidy a Happy Birthday and pictures of candles they had lit in her honor.

Last night, I made a cake for her. Making a cake for her made me feel like I was doing something in her memory that I could share with my family. Buying a cake would not have had the same "healing" effect on me as this would have. We met family at the cemetery at 4:00 to have a little birthday "party" for Kassidy. I decorated her headstone with different pink items, a picture of baby Steven, and a cross I had painted and decorated for her the day before. Of course, we brought balloons to release at 4:16pm (the time she was born). We had markers and few family members wrote messages to her on the balloons. At 4:16pm, I handed out the balloons to my family and we all counted down "3, 2, 1" and let them go. I watched at they floated and disappeared.

I can't believe it's been 365 days. I counted last night and found that the days between the the moment I found out I was pregnant until her birthday was 211. It seems like nothing. I sure do look forward to spending eternity with her one day.

November 4, 2013 - Steven & Kassidy (1 yr old tomorrow!)

If you are following me from my old website, you can see that I have copied and pasted all of my past blog posts below. Steven William III is now 7 weeks old, and such a joy!

Steven, 5 days old, with his rainbow blanket.

Our little family.

Kassidy watching over him...

Steven arrived on Saturday, September 14, 2013 at 2:30pm. He was 8lbs 15 oz and 21 inches. 

It was a perfect labor and delivery, everything went quick and just how I would have hoped. Kassidy's presence that day was evident: I had the same nurse, Kristen, that I had when I delivered Kassidy. Kristen told me that it was a miracle I was able to get her as she only worked 2 days a week there! 

The day after I had him, I was sitting in my postpartum room and just began balling. My nurse walked in, saw I was crying and asked me why. I couldn't answer. I didn't know why I was crying. I had everything I ever wanted, but I couldn't stop crying. She knew I had a stillborn daughter just 10 months before - she didn't know the specifics- but she worded it perfectly. "You are upset because you are finally seeing what you missed out on when you lost her."She was right. 

The following weeks after we brought Steven home were not what I imagined. I found myself much more tired that I anticipated, had trouble breastfeeding (things have gotten much better since...), and had horrible baby blues. I got little sleep even when I had the time to sleep, because I was worried about SIDS. During the day, I had people calling me to bring him places so they could see him, but frankly I was just too exhausted and overly sensitive about anything someone would say about how I was taking care of him. My hormones were getting the best of me. 

Now that Steven is almost 2 months old, I am finally feeling like I have a routine and the confidence to know I am doing a good job caring for him. Steven was baptized at 2 weeks old at our beloved church, St. Anne. Shortly after, the priest, Father Juan, that spoke at Kassidy's funeral, gave Steven a blessing. A few weeks later, Father Sergio, the priest that came to the hospital and saw Kassidy and kissed her face, told us that Steven was the most beautiful person he had ever seen. 

Being a stay-at-home-mom is wonderful, I am so fortunate to have a husband that supports me and wants me to care for our baby at home. It is also one of the most difficult things I have ever done. I commit my time, 24/7, to caring for this small helpless little human...sure when you are pregnant you know this, but you really don't realize how difficult this can be (sometimes on 2 hours of sleep!).

Tomorrow is a big day - It is Kassidy's 1st BIRTHDAY. I've been both dreading and looking forward to this day for so long. We have invited family to meet us at the cemetery for birthday cake and a balloon release at 4:16pm (the time she was born). This past weekend Stevie and I bought the traditional "1" napkins, pink plates and forks...along with some decoration we can outline her headstone with. There is a part of me that is looking forward to celebrating her life, instead of mourning her death. However, how can I not mourn her death all over again on this day? IF she were here, she would be walking. She would be eating cake. She would be learning about her baby brother. Tears are running down my cheeks as I type this. Please pray for me. I was in the hospital for days leading up to her delivery, so the past few days have brought back memories of what happened each day while I was there. For example,a year ago today I was given pitocin and an epidural. 

If you would like to participate in our celebration of Kassidy's 1st birthday, please light a candle for her tomorrow. 

Kelsey

July 8, 2013 - 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.

May 28, 2013 - 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

May 9, 2013 - Six 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

April 26, 2013 - Life Today

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

April 19, 2013 - Little BROTHER

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

April 18, 2013 - 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

April 5, 2013 - Five Months Later

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.

April 2, 2013 - 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

March 27, 2013 - A Thought

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

March 26, 2013 - Comparing

I have a doctor’s appointment today. I am about 14 1/2 weeks along with Kassidy’s little sibling. I’ve been reading that within the next few weeks, this baby will be able to hear my heart beating, hear my voice, and even become sensitive to light.  Right now, our baby can even make facial expressions. I caught myself thinking back to when I was 14 weeks with Kassidy. It was about 2 weeks after her diagnosis, and I had stopped reading about her development. Here I was, within my 2nd pregnancy, but learning things for the first time still. I was convinced she wouldn’t be able to hear or see or would even pass at any time. Then I remembered Kassidy’s movements to loud noises (especially at my sister-in-laws wedding, or when we were staying in a cabin up north and she could hear the guys shooting guns nearby).

But back to my doctor’s appointment. It’s in a few hours, and I find myself being excited. “Excitement” is new to us. Looking at cribs – is new to us. Buying baby clothes – all of it – is new to us. I’ve become so incredibly grateful for the little things that new parents do, and what they think is, normal. It’s the an IMPOSSIBLE EXPLANATION of happiness. Sure, they are all just objects. But when I get little socks, I imagine slipping them over perfect little toes. This is one of the many things I never got to do with Kassidy.

I’ve been attempting to find our baby’s heartbeat on my home doppler for weeks now, and I was FINALLY able to find it a few days ago. The heartbeat was 146, and two days later when I checked again, 148. The lower number gives us the idea it may a boy. Guessing is fun, but we really won’t know until our anatomy scan on April 19th. I can’t wait!

The pregnancy itself has been easy. Much easier than with Kassidy, in regards to nausea and hip pain. The only symptoms I’ve even had have been fatigue and hunger all the time. I never gained weight with my last pregnancy, but I imagine this time I will gain some. I really can’t believe how hungry I have been. I will take it as a sign that baby is growing! I also imagine it has to do with my nerves. I was always on edge and upset when I was pregnant with Kassidy – I worried a lot, and it affected my appetite. This pregnancy, my worries have been replaced with comfort in seeing a round head on an ultrasound picture. I can relax!

God Bless!

Kelsey

March 8, 2013 - Specialist

Hello Friends!

Today Stevie and I went to a Fetal Diagnostic Center to have a thorough check-up on our new rainbow baby. This is the same specialist we saw last June that diagnosed Kassidy with her defects. I had felt pretty calm up until last night, as we had already found out that this baby doesn’t have anencephaly. My mind began to run wild with different thoughts of what might be found. I awake at 3:30am and couldn’t fall back asleep.

At 8:00am, we were checked in and called back by our ultrasound tech. I wished I remembered her name, she was very kind to us. She told me that she had read my file, about what our last baby was diagnosed with, and hoped that we got good news today. We were walked back to our room and our ultrasound began. We immediately saw that round head again, a perfect little body and arms and legs. Then- I saw the little heart flickering. When the u/s began, our baby was sleeping. The tech was able to easily measure the fluid in the back of the baby’s neck (NT scan). I asked her what exactly the measurement meant. She said that if the area showed to be too thick, that was an indication of an abnormality. She had just finished the sentence and our baby woke up! He/she began kicking like crazy, I made a comment about how it looked like it was dancing. Stevie moved his chair next to the bed so I could hold his hand. I began to relax. I could feel my legs release from the tense hold I had been doing. Our baby seemed to keep bringing his/her right hand up to their mouth. I imagine it’s too early for our baby to suck their thumb, but it looked pretty close to it. The tech pointed out the nasal bone, the leg bones and the umbilical cord. I asked her if she was able to see a four chamber heart this early. Kassidy only had 2 chambers in her heart. She answered, “possibly.” We looked at the heart for a while, which I wasn’t really able to decipher any chambers. The u/s lasted about 45 minutes and by the end I felt like I had a giant nervous question mark hanging over my head. I knew the tech couldn’t discuss anything with us, so I didn’t ask. I learned that Dr. Solomon would be seeing us. I had expected Dr. Blumerick (my regular OBGYN had trained with him) but Dr. Solomon helped out. I didn’t ask why the switch was made in the schedule. We had seen Dr. Solomon when Kassidy was diagnosed. I wondered if she would remember us.

Dr. Solomon came in and continued the ultrasound herself. She hadn’t done this with Kassidy, so I wasn’t sure if this was a good or bad sign. Immediately she hovered over a gray area that seemed to outline part of my uterus. She asked the tech if she had seen that. “No,” she answered. What was this? I panicked a little. Dr. Solomon asked, “have you had any bleeding?” “Yes!” I answered. I recalled spotting at 7 and 8 weeks and being so stressed out about it. She explained to me that I had a subchorionic hemorrhage. I had heard of these before, but didn’t really know what that was. She said it was no concern at all. It was small and the baby was fine. I later googled it (of course) and read about it affecting the placenta. I’m going to take note to ask Dr. Connors about that at my next appointment. It was nice to find out why I was bleeding though.

Dr. Solomon said that it appeared this pregnancy would be the complete opposite of the one with Kassidy – this baby is healthy! The fluid measured behind the next came out to 1.3mm, and anything above 3mm would be worrisome. Our baby was just fine. I did have some blood tests to check for T13, T18 and downs syndrome, but based on what they were able to see today they have no reason or indication for concern. Baby is measuring right on track in all areas- head, belly, heart (yes, even heart looks great!). I was so relieved I cried!!!

We were given printed out pictures and a CD of even more pictures, and were sent to see Corrine, a genetic counselor. We saw Corrine after Kassidy’s diagnosis too. She gave me a lot of answers regarding anencephaly that I was not able to find online or from other anen mothers – and right after Kassidy’s diagnosis, I wasn’t in a sound state of mind to think of these questions. I asked about Kassidy’s crossed fingers, and learned that these are definitely an indication of Trisomy 13 or 18. I asked if T13 or T18 caused anencpehaly (I read this someplace online). She said “absolutely.” She explained that T18 was more common to cause other abnormalities including the omphalocele or an endocardial cushion defect. We also learned that T18 is not genetic, and it typically happens at chance and to couples who DO NOT have family history of these defects. I finally felt like I had answers!!!! I am now certain (in my heart) that Kassidy had Trisomy 18 – which caused anencephaly, an omphalocele and her heart defect. That would make sense because our genetic test last year came back normal. Because T18 is not genetic, we have an over 99% chance that we will have nothing but healthy babies from here on out! I had a huge sigh of relief at this piece of information. Today was a FANTASTIC visit with the specialist. We go back in 6 weeks for the anatomy scan…I’m actually looking forward to it! This is an emotion I don’t have too often.

Oh, and Dr. Solomon looked at ultrasound and said she thinks it is a GIRL. 6 more weeks and we will find out for sure! 

God bless!

-Stevie, Kelsey, Kassidy and “Rainbow” Baby

March 4, 2013 - NO Anencephaly

We received the wonderful news on Friday that our baby due in September does NOT have anencephaly and does NOT have an omphalocele!!! We are on cloud 9. We are scheduled to see a specialist on Friday for an NT scan/1st trimester screening. Now that I know our rainbow baby is healthy, I  feel excited to see him/her again but during a level 2 ultrasound. More information to come!

Kassidy’s 4 month bday is tomorrow, it’s really flown by. I miss her so much, and often think about her and what we would be doing now. It’s nice outside as of late, so I imagine I would be taking Kassidy on walks around our neighborhood. Every second in heaven must be a million times nicer than any walk we would have done on earth. Reminiscing about my pregnancy and birth with her nowadays seems like it was a dream. Maybe I’m still in shock that it happened to us.

I am so thankful for Kassidy. Although I am sad to have lost her, I am so happy to have ever been blessed with her.

February 27, 2013 - Headstone

Kassidy’s Headstone was placed on Tuesday, February 26th. It’s absolutely perfect (but not as perfect as her). I’m very happy with how it turned out. I got the call at work yesterday around 4:30 that it was placed. I was overwhelmed with emotion, I began crying at my desk. I left work early to see it, all the way crying even harder. I’m not sure if they were “relief” tears that it was finally there, or sad…I don’t know. I’d met a woman earlier that day that lost her daughter in January. When I arrived at the cemetery, she was there visiting her baby! I talked with her a while and saw where her daughter was, and then showed her where Kassidy was. After she left, I sat with Kassidy and began cleaning off the dirt from the headstone. I touched every letter on it and cried. I re-arranged her things as they had been moved.

On Friday, I have an 11-week ultrasound scheduled to check on our rainbow baby. This ultrasound is to specifically check the baby’s brain. So, this will ultimately tell us if the baby has anencephaly or not. They will also be able to tell if the baby has an omphalocele as well. I’m beginning to get nervous, which I feel is a natural response after what we have gone through. On March 8th, we see the specialist. Our specialist appointment will go from 7:45-11:00am. It will consist of a level 2 ultrasound, a meeting with a genetic counselor, and of course a meeting with a doctor. I feel like I have more anxiety about this than the one we will have on Friday. I suppose knowing that a level 2 ultrasound can find more means I have a higher chance of bad news there than my regular OBGYN…I need to think positive. I wish I could have “blissful ignorance” again like before we found out anything was wrong with Kassidy. I will never have that again.

February 18, 2013 - Blessing from God

“If an infant dies through some physical problem with the human body, the Soul immediately returns to the Father, and without man knowing it, there is a deep Blessing that goes to the individual carrying this Soul, a Blessing that gives strength to endure, to go on, because humanly speaking, mankind could no handle many disappointments such as this, nor could mankind be able to return to a normal way of life, unless they were Blessing from the Father, deliberately helping the mind and the body of individuals over such a dramatic disappointments or physical pain.”

February 14, 2013 - Bittersweet

Happy Valentine’s Day <3

I’ve recently come in contact with a few couples who have lost their child unexpectedly to stillbirth. While this saddens me and brings back all the raw emotions of November 5th, it’s important to remember that God always has a purpose for these events. One couple in particular that has been on my heart lately is a couple at my church. I have never met them, but I learned of their loss a few weeks ago from a mutual friend within the church. Every Mass there are “Prayers of the Faithful” and names are listed of the sick and deceased. Hearing their daughter’s name broke my heart, I recall how devastating it was to hear Kassidy’s name said out loud for months when she was in utero fighting against her odds and even a few weeks after her passing. The first week that Kassidy’s name was not said was even just as hurtful. I recognized when their daughter’s name wasn’t announced anymore. I told this couple by letter and email that week 5 after losing the baby is always the most difficult to endure, as that is when family and friends begin to disappear and the baby’s name isn’t mentioned anymore. It’s also when the “shock” phase wears off and you feel completely alone. You feel like every one has moved on while you are still crying every opportunity you get. I made a discovery last week – week 12 is JUST as difficult as week 5. Finding words to describe the emptiness you feel at week 12 is impossible. The guilty feeling returns. Although this time is disheartening, I also witnessed appreciation and genuine love:

Stevie’s cousin and his wife welcomed their second child on February 6th. Baby Isaac is an extra special baby, because Isaac was born needing multiple surgeries to correct a cosmetic “blessing” from God. Most couples facing what Joey and Karie have to face may be angry or upset for their child having to need these operations, but I’ve seen nothing but their positive attitude. If anything, it reiterates that God hand selects the strongest parents to care for these babies. Whether it be Isaac, Kassidy or any other infant God pays a little extra-special attention to when he creates them. God is GOOD.

Two days ago, Stevie and I went in for another doctor’s appointment to check on our “rainbow” baby. Naturally, I was being a worrisome mommy and praying every second leading up to the ultrasound that we would see a strong heartbeat and discover that baby had grown. If you read the previous post, the last ultrasound showed that the baby was measuring behind and the heartbeat was at 115. There was confusion on my due date because of how small the baby was. Just after 1:40pm, we were called back. The ultrasound tech was the same woman who did the last ultrasound, and she remembered me and even remembered that our baby was at 115! Great memory! I liked her already. Legs straight, lights off, gel applied – the ultrasound began. Immediately she pointed out a beating heart. I squealed in excitement and reached out my hand to Stevie. Then we heard a healthy heartbeat of 164! I could tell from the screen that the baby had grown, and I was relieved to hear that baby is measuring at 8 weeks and 2 days! If they keep my original due date of Sept 20th, that means the baby is only 2 days behind, which is absolutely fine. Thank you God! Thank you Kassidy! We met with Dr. Connors and discussed coming back in about 2 weeks so the tech could get a good look at the baby’s brain. This is an option for us, which we accepted so we can have peace of mind about anencephaly. I don’t expect bad news, but good news means I can rest easier at night. We also still plan to meet with a specialist around 12 weeks for a full check and first trimester screening. Our next appointment is March 1st.

February 5, 2013 - Happy 3 Month Heavenly Birthday

I cannot believe it’s been three months since Kassidy joined God. All at the same time, time has flown, and time has stood still. Every day I still cry for her, and every day I miss her even more. It’s important to also realize that every day is one day closer to seeing her again in heaven.

Kassidy’s headstone should be placed within the next few weeks, I look forward to seeing how it turned out. Today a woman named Heidi called me from my doctor’s office. I met Heidi in the hospital the day after I had Kassidy, and she told me about her son that she had lost. She has since gone on to have a healthy baby girl. Heidi has called me a few times since I had Kassidy to check on me, each time I missed her phone call until today. Heidi mentioned she didn’t want me to think that Kassidy had been forgotten – which meant the world to me. She congratulated me on our new rainbow baby, and asked if I have looked into counseling. I haven’t…but I’m considering it more now than ever because my pregnancy emotions are on the rise. I’m at a very high risk for postpartum depression come end of September…

This past weekend, I made a heart shaped weighted pillow that resembles Kassidy. It’s 2lbs 11oz and 12 ½ inches. As soon as I finished it, I burst into tears. I couldn’t stop crying, it went on for hours. I proceeded to walk into her nursery and smell her blankets from the hospital. I sat down at my laptop and worked on her book. I’m at the part in the book of the morning after her birth. Remembering the details from those days is so painful, but I want to write them down to remember them forever and share them with other mothers who face a fatal diagnosis. I just wish it was easier…I find myself getting frustrated when I cannot remember things such as my nurses’ names, or even which days my siblings came into the hospital.

Our rainbow baby gave us a scare last night and this morning. Yesterday I noticed I was spotting, and I rushed to my doctor’s office as they were closing. It was too late for an ultrasound, and I’m too early in my pregnancy for a Doppler to pick up a  heartbeat. I went home, in tears, knowing I just had to wait until morning. They said they could get me in at 8am. All night I laid in bed, thinking the  worst. I kept checking and the bleeding had stopped…I wasn’t cramping either. I tried to stay positive.

8am today, on Kassidy’s 3 months bday, I had an ultrasound. Our little rainbow had a heart rate of 115, and was measuring behind. Luckily, they couldn’t see any tears and where the bleeding may have come from. The ultrasound tech said it may have come from my cervix. The gestational sac was thick and had no signs of a threatened miscarriage. Thank you God.

I spoke with a doctor after the scan, a doctor I had never met before. She said that my due date should be September 24th. I was confused. I was originally told the 20th. The reason this is so important to determine if to make sure the baby is growing right on schedule. IF the baby is due the 24th, the baby is measuring 2 days behind, which is alright. IF the baby is due the 20th, then the baby is 6 day behind, and we have cause for concern. I have another ultrasound scheduled for February 12th, one week from today, to monitor things. I feel relieved we have a heartbeat (115 is a good number for how far along I am) but a bit worried for the baby’s growth.

Thanks for the continued prayers,

Kelsey

January 29, 2013 - Rainbow Baby!

We have some big news…we are expecting our rainbow baby on September 20th!

We were a little caught off guard when we got a positive pregnancy test on January 12th. My heart tells me that Kassidy is looking out for us. My empty arms were longing for a baby, and it turns out God had a plan to fill our arms just after our 25th birthdays. We are so thankful and blessed! This baby was conceived just 8 weeks after Kassidy joined God.

Almost immediately,  I went into the doctor to get a blood test to check my progesterone levels and hcg numbers. For those that are not familiar, progesterone is the hormone that is required to sustain a pregnancy. At 4 weeks, the normal numbers are usually 12-20. My number came back at 22 – fantastic. HCG is the pregnancy hormones that shows the pregnancy is progressing like it should. This number should double every 48 hours. My number jumped from 160 to 426 – also fantastic. My nerves were shot the first week, I was worried for a miscarriage (well, I still am) as I lost our first baby to a miscarriage at 5 weeks and 6 days along.

We announced our “rainbow” baby to our families and close friends, and awaited an early ultrasound that was set for Monday, January 28th (yesterday). I would be about 6 weeks along and they would look for a heartbeat. I had been so scared to get bad news that I began to lose sleep the week leading up to the ultrasound. I researched online what I should look for at the u/s. I read that we should see a gestational sac, yolk sac, a fetal pole and possibly a heartbeat – although sometimes if the conception date is off, a heartbeat may not be visible yet.

I paid attention to my symptoms. I would feel queasy in cars and in the middle of the night, however I wasn’t sick. I never had morning sickness with Kassidy, so I didn’t worry about this. I had cravings and continual hunger. I was very emotional, more than how I was when I am grieving. I was crying over everything!

Stevie met up with me for the appointment. We were called back and an internal ultrasound began. The woman pointed out the gestation sac. I thought to myself, check. She pointed out the yolk sac.Check. Fetal pole, aka baby. Check. She kept trying to find a heartbeat. She commented on how tiny the baby was, she even said that if we had come in just one day before, she may not have even seen the baby because I was early. Stevie and the technician SAW a heart beating, but since baby was so small, we didn’t get to hear it or find out how fast it was. I still felt like this was a pretty good appointment. I am reassured baby is okay! Thank you Kassidy!!! The woman said, “One baby,” and I jokingly laughed and asked “No twins?”

We met with Dr. Connors, and discussed the ultrasound. Dr. Connors said that everything looked great, she was very happy with the results. She said that the technician recommended we have an ultrasound at 10 weeks because she would be able to see the brain then. “YES.” We answered. Anything for reassurance. We also decided that I would have the 1st trimester screening with the specialist at 12 weeks to check for additional abnormalities. Trisomy 13 and 18 are fears in addition to neural tube defects, omphaloceles and heart defects…because Kassidy’s fingers were crossed. That is a sign of those defects.

Dr. Connors must understand that I worry a lot, she offered to have us come back in 2 weeks for another u/s to actually hear the heartbeat and get a heartrate. So as it stands, I will have ultrasounds at 8 weeks, 10 weeks and 12 weeks. If all is well after that, we will be treated as a healthy pregnancy and I can drop my “high risk” status. I’m relieved I get extra care this first trimester. It will ease my stress level drastically. I also learned I have a tilted uterus, and baby is waaaay up towards my back. I’m happy the baby is snuggled up higher, it makes me think he/she is extra protected in there.

Another big moment this week: our priest, Fr. Sergio, blessed this unborn baby. He did the same for Kassidy about 2 weeks after her diagnosis. This time, my in-laws and a few of Stevie’s siblings attended. It was beautiful!!! We prayed for a healthy and worry-free pregnancy. (Thanks for setting this up Jean!)

I’m hoping and praying that this pregnancy is “it” – our healthy  baby we finally get to keep and take home with us. Each day I wake up thankful to still be pregnant with him/her. I may only be 6 ½ weeks along, but I feel a strong connection already and love the baby so much!  I know our guardian angel is with us every moment – we miss Kassidy so much…

We will keep you all posted on progress with our “rainbow baby.” We are already suspecting it’s a BOY. We will find out in April

January 18, 2013 - Smiling Again

It’s been a little over 10 weeks since Kassidy’s birth, and lately I’ve felt the happiest I’ve felt since her passing. I’ve been comforted by God’s presence in our lives lately, He really does watch over us. I also became more aware of Kassidy’s current role in our lives. I know wherever I go, she is with me. Whenever I talk, I know she hears me. When I pray, I know she comforts me.

I bought a tiny windmill from Hobby Lobby last week, along with a garden butterfly to set up at her resting place. At Mercy Gilbert Medical Center, butterflies often represent a baby flying to heaven. When I saw the butterfly, I knew I had to get it for my baby girl. On Monday, 1/14, I was able to set up Kassidy’s decorations back on her grave after the cemetery did their clean-up. Once I was done setting the things up just as they were before, I stuck the windmill right above where I imagine her feet were. Instantly, the windmill began to spin. To me, it was showing me that Kassidy was watching me! I smiled. I stuck the butterfly up near her head.

I visited Kassidy yesterday as well (1/17). This time, I just let myself cry. I talked to her more, and spent a little more time there than I usually do. There was literally no one else in the cemetery at that time. It’s nice when you can just talk and cry without holding anything back (which I would tend to do when someone else was at a nearby love one’s grave). I was weeping, so hard that I couldn’t even see, and then I asked Kassidy to be with me – suddenly I took a deep breath and I was calm. Thanks lil lady <3

The past couple weeks, I noticed that a woman would arrive around 5:10pm every day in a big white truck. She would walk to an adult grave probably about 150 feet from where Kassidy lays. She would do the same things I would – fix the flowers/gifts there, kneel, pray and then leave. I knew she was hurting. Sometimes I want to say hi, or even ask who she is visiting…but I always convince myself not to. I’m not sure the circumstances and I don’t want to make her uncomfortable. I was tempted to do that same thing when I saw parents decorating their baby’s grave just two spot east of Kassidy. Would it be weird though? “Hey, your baby is buried by my baby, blah blah blah.” Yes, it would be.  Yesterday I got to the cemetery before the big white truck. I quickly walked over to the grave so I could read the headstone. It was a man, born in 1988 (same year as me) and he had passed in 2009. His picture is on the headstone, and he is dressed in army greens. Based on his age and the woman who visits him, I suspect she is his wife or girlfriend. So sad. It had been 3 years since his passing and she still visited him DAILY. I supposed it’s sweet, I hope she is doing okay emotionally. I wonder how I will be in 3 years…

When you are pregnant with a baby who has been given a fatal diagnosis, and after you lose your baby, you come in contact with a lot of women who have been through something similar. It is really amazing how many women have been through horrible experiences, and yet in everyday life you only seem to hear about perfect pregnancies.  A perfect pregnancy, to me, seems very unrealistic. How is that even possible? With Kassidy having three abnormalities, it would be such  a gift, in my eyes, to have a baby with only one, let alone NONE at all. Lately I’ve created a habit of researching birth defects. I want to know which ones are most common, which ones can be prevented, and what vitamins I should be taking. I don’t feel like I did enough homework the first time around. I pulled out all of my pregnancy books (What to Expect When You’re Expecting -even What to Expect BEFORE You’re Expecting, Pregnancy Week by Week books, etc). I specifically looked for any mention of anencephaly, omphalocele, heart defects etc. Nothing. It angered me that there wasn’t awareness. Spina Bifida was mentioned, of course, but not anencephaly. For those unclear about the differences, here is the best way to describe it: Both are neural tube defects. Spina Bifida occurs when the neural tube doesn’t close at the bottom, Anencephaly occurs when the neural tube doesn’t close at the top (resulting in no formation of skull, and only portions of the brain). Sure, we’ve all heard of spina bifida, but NEVER anencephaly. Why? Because most anencephaly babies are aborted. Spina Bifida isn’t necessarily fatal. Another interesting piece of information I came across this week: I kept hearing the term “Acrania” when I researched anencephaly. Although I don’t have a full understanding of the differences between the two, I did read that anencephaly means that the baby has less than 30% of their brain, whereas acrania babies have more than 30% of their brain.

I’m considering deleting my Facebook page for Kassidy. I don’t have many things to post on it anymore, aside from maybe progression notes on my book. I think people that are particularly interested will read this blog instead of watching for things on Facebook. Also, I noticed that my followers are decreasing…which kind of breaks my heart, but I have no control over if someone “unlikes” the page. It was bound to happen.

I will continue to work on Kassidy’s book, she is giving me strength to tackle each day and make it worth it.

God Bless!

Kelsey