When I first began writing the blog I couldn’t have imagined the impact that it would have, not just on myself and my family, but on the thousands who have read it worldwide.  Many people reached out from all over the globe and asked why I don’t update it more regularly or have requested that I update it more than I do.  I’ve expressed in the past how much love and support we have received from our situation but haven’t really mentioned it in detail before.  Averaging 4,000-5,000 views for each post we publish has made us feel that our love for Tabatha lives on.  As I’ve expressed before, it is not always easy to pour your heart out to the world but knowing that your message is being received by so many brings comfort to my husband and I, as well as validation that these words might be helping someone else.

Today is April 2, 2016, our daughter Tabatha Darling’s first birthday. I’m currently in Washington watching my sisters four children for eleven days while she enjoys some much needed quality time with her husband in Paris.  Since I knew I would be away for Tabatha’s first birthday, Evan and I decided to celebrate last Saturday, a week early.  I had been looking forward to celebrating her first birthday for a while.  Being pregnant with our second child, I have had expectations as to how I would feel leading up to the anniversary of her birth.  It ended up being vastly different than I thought.

About a week before we celebrated her birthday, I started to see little “triggers” that made me cry all week.  I’m sure pregnancy hormones didn’t help either.  Tabatha passed away just three days before Easter last year so the sight of Easter stuff was a reminder of how we were feeling for the entire week after she passed away.  The entire week leading up to the day we celebrated her birthday, I couldn’t help but think about how I should be taking my one year old to her first Easter egg hunt, dressing her in a pretty Easter dress for church or going to get her picture taken with the Easter bunny.  It was heart wrenching, but I had to quickly and constantly remind myself how lucky we have been despite all that we’ve been through.  I have tried hard to put things back into perspective as quickly as possible by reminding myself, time and time again, that things happen for a reason.

The day we decided to celebrate her birth, Evan and I visited the cemetery where she was laid to rest.  Although we know she is not there, we wanted to feel as connected to her as possible.  We brought along her beautiful quilt which had been handmade by a kind sister from church.  We used Tabatha’s tiny quilt to sit on at her birthday picnic.  It hadn’t been touched since we last wrapped her little body in it and held her.  We ate the lunch that we had packed, talked a lot about our experience with our daughter, our love for her and our life since.  We even took a nap!  These times are really hard on my emotions.  Some might ask, then why even do it?  Why put yourself through that?  My response to that is, I HAVE to.  I can’t just look the other way and bury my feelings.  If it means dealing with the pain for a day versus dealing with the pain for a lifetime, I’ll take a day here and there.  I wont let those tough times get in the way of good times I know I will have in the future.

While Evan and I were enjoying a few hours at the cemetery for our picnic, I noticed three different mothers bringing their children beautiful Easter flowers, bright colored eggs and other stuff to decorate their children’s headstones.  The area where Tabatha is buried is exclusively for babies.  One of the mothers in particular caught my attention.  While the other mothers came, dropped off decorations and flowers, stayed for a moment, then leaving, this one mother stood there over the grave, in obvious torment, weeping.  Evan made a comment to me about how bad he felt for that mother.  I felt bad for her too.  It made me think, “is she just having a rough moment”?  Or does she have a hard day every day?  Is her whole life racked with torment over the loss of her child?  I really hope that she was just in a rough moment.  I know that I struggle from time to time, but I feel like my faith in the gospel helps me to get through those tough times.  I know that we don’t have to suffer daily because we have a loving Heavenly Father who cares for us and wants us to be happy.  We don’t go through hard times to be punished but rather to learn, grow and become the amazing people that he wants us to become.  It’s why we have choices and live in the world that we live in.  I pray for those three mothers and for other mothers who struggle daily with the pain from the loss of a child.  I might not have all the details figured out as to why we have gone through what we have gone through, but I know that in due time I will.  Until then, I have faith that it’s for good reason. I trust in my Heavenly Father.

I wish I could hug and kiss my baby girl today.  I would tell her how much she means to me despite the short time we had together.  My Great Grandma Hunter and Grandpa Knudtson are just some of my favorite people in heaven whom I know are helping my baby celebrate her first birthday today.  That thought gives me great comfort today and always.  Happy First Birthday Tabatha Darling.  We love you!

 

 

Nine months ago our lives changed for the better. We had never felt so much happiness and despair all at the same time. Reflecting over the past nine months, we had so much fulfillment first experiencing our pregnancy, then the birth of our daughter. The saying “it’s better to have loved and lost then to never have loved at all”, rings true for Evan and I. Sometimes I think it has been harder dealing with life and living each day, than going through the heartache of the actual experience.   I had a mother reach out to me shortly after Tabatha’s passing to give me some advice to help me through the situation. She told me that you will always have a hole in your heart and it will never be filled, but you will learn how to live with it. I’m glad she shared this with me because it made me realize that I have been able to heal. I will heal. I know that with what I believe and through Christ, I don’t have to have this hole in my heart forever. I will admit though that I have felt and continue to feel a physical void. I know that a new child will never replace Tabatha, but I know I can fill that void by progressing though life and growing my family.

Since the birth and death of our baby I have felt like I have been holding my breath. I’ve tried to avoid the word depression because I have worked hard to not be in that state. But I will tell you that I have felt like I’ve put the world on hold. I’ve just been ready to experience life and happiness through my own children rather than for myself. I have felt out of place having social experiences, such as going out to dinner with Evan, or even going to the store, because there is always the reminder that I don’t have a baby seat to lug in and out of the car. It’s not a hole in your heart kind of feeling, but rather a hole in your back seat where the baby carrier is supposed to sit everyday in the car. The toughest part is having that constant reminder.

I’ve also felt a separation from some of my closest friends. Whether it is self-imposed or otherwise, I have made the choice to not get upset with them. We all have very busy lives. I get it. Difficult situations like ours remind people of their own heartaches as well as their fears of what they to could lose. Everyone is different and we all deal with grief in our own way. There is no handbook that we must follow for helping someone heal. On the other hand, I have also experienced an outpouring of love from friends who were once only acquaintances that have been there for me on a daily basis. Good or bad, thick or thin, I am very glad I have been able to experience new types of bonds and friendships.

This trial has taught me to rely on my Heavenly Father and my husband more. Just as importantly, it has taught me about self-reliance. It has taught me to survive when I didn’t feel like surviving. Just as I mentioned before, I feel like the really hard work started the day Tabatha passed away. I’m proud of myself and Evan for making it this far and for getting through each difficult day.

We have so much to look forward to especially because we are now expecting another baby in July! We’re PREGNANT! We’ve known since Halloween, but have kept it a secret until we made it out of the first trimester. What an awesome feeling to be able to share it with you! The past weeks I have had Hyperemesis Gravidarum (extreme sickness during pregnancy). Damn you Progesterone! Though I’ve had IV’s weekly, bed rest for weeks and A LOT of carbs…. I’m so thankful to be pregnant again! I feel so blessed and privileged to be carrying another baby. We had early testing done and there are NO CHROMOSOMAL ABNORMALITIES. Thank goodness! We know that anything can happen, but we feel so much relief that we wont be in the same position that we were in nine months ago with our Tabatha Darling.

I know that someday when my arm is burning from juggling a baby carrier and diaper bag, or my eyes are half closed from lack of sleep or my house looks like a toy box exploded, I wont have a physical void. I’ll be able to teach my kids about their big sister Tabatha and how she changed our lives and family forever. I am so grateful for this life I have been given, for my wonderful husband, my Heavenly Father, wonderful unexpected people who support and love you through hard times and especially this new baby growing inside of me.

It’s been 5 weeks since I became a mother. Some days feel like so much has happened since then, almost like it was a lifetime ago.  Other days, it still doesn’t seem real because it all happened so fast.  It’s difficult to wrap my brain around.  I’ve been avoiding updating the blog because it’s so much easier for me to deal with things privately.  But what is easier isn’t always best.  I can’t entirely explain why, but there is something therapeutic about sharing experiences with others whether we enjoy it or not.  There is something about human nature that connects us to each other.  Whether it is because we know that it might help someone through a hard situation similar to ours, or some other connection, it’s helpful.

I have been excited for my first Mother’s Day for a very long time.  One of the first thoughts that came to my mind when we found out Tabatha’s due date, was that she would be born the week of Mother’s Day, May 15, 2015.  The thought of holding a baby on my first Mother’s Day like so many other mothers, made me feel like I was part of some maternal sorority, like I was fulfilling my purpose on earth.  Mother’s Day can be one of the most rewarding and happiest of days for some.  But for others, Mother’s Day can be a reminder that your child is gone.  It’s hard to pretend that things are ordinary or that life is normal again after her passing.  All the Mother’s Day commercials, flowers and Hallmark cards at the grocery store, make it almost excruciating.  I have also stayed off of Facebook and Instagram today for fear of seeing all the “I love you Mom” posts.

This morning Evan went to church without me.  I knew that the talks about being moms, dads speaking about eternal families and primary children singing “Mother I love you” would be too overwhelming.  When Evan got home he said he had to step out during the primary singing because it was just too much for him to handle.  Being the way he is, it’s usually very difficult for him to express the emotions he is feeling. During this trial however, he has tried valiantly to show his vulnerability to me, something I dearly appreciate.  I don’t feel alone when I know he is struggling from time to time, just like I am.  Because of that, it draws us closer in ways I didn’t know were possible.

Obviously, a lot has changed since my thoughts of Mother’s Day from months ago.  It seems that everyday I experience a spectrum of emotions, but today, more so than most others.  I’m celebrating being a first time mom, but I’m celebrating it without a child, which is extremely difficult.  I have an understanding that loss is part of life.  Our daughter Tabatha, and all those we love, are gifts to us for however long we have them.  It doesn’t make me miss our daughter any less, or Mother’s Day any easier, but it helps me make sense of it.  Despite all the raw emotions I’m feeling and have felt, I am grateful that I became a mother to our daughter Tabatha Darling Wagley. She is our proudest achievement.

Thursday, April 9, 2015 the day before Tabatha Darling’s burial, Evan and I were given the opportunity to dress our baby. We were somewhat apprehensive beforehand, but when we entered the small quiet room that they placed her in, we felt a sense of comfort and peace. We worked together to dress her in a beautiful long lace gown and sheer lace bonnet. I put makeup on her delicate little face to get her ready for the viewing. Foundation, powder, blush and lipstick, she looked beautiful. It was a bittersweet moment for me knowing that I would never be able to place makeup on her for dress up, a dance recital or a prom date. I had to remember that with her condition she was never meant to have any of those things in this life. I felt extremely grateful for the opportunity to bond with her during that time. It filled a void that I didn’t realize was even there. We held and kissed her one last time before we placed her in her tiny white casket that was decorated with white sheer ruffles and light pink bows.

In the weeks and months before we had our Tabatha Darling, Evan and I discussed having a large funeral service for our baby. However, from the moment she was born, we had felt protective of her. Since she was special, tiny and sacred to us, we ultimately decided that she needed a service that reflected how we felt about her.

Friday, April 10, 2015, one of the most memorable days of our lives. Just ten of our immediate family members were in attendance including Evan and I. We had a viewing followed by a short graveside service. The spot we picked for Tabatha’s resting place overlooks the entire cemetery. It is set upon a hillside next to a cute little tree. It is now Tabatha’s tree. We placed several photos in her casket: a photo of Evan and I on our wedding day in front of the San Diego Temple to remind her that we are sealed together forever, a few photos of the three of us as a family in the hospital, some from our maternity photo session and a few of our favorite depictions of the Savior.

At the graveside service, Evan conducted and expressed such sweet words about our beliefs about the importance of family and life after death. He shared his testimony about the plan of salvation with Jesus Christ being the cornerstone of that plan. He expressed how families can have lasting happiness in this life and the next, despite our tribulations. I too was able to share my feelings, and how we can overcome not only physical death, but spiritual death as well. I shared a scripture on how we believe that babies are perfect and that our Tabatha Darling is no exception. I expressed how grateful I was that our baby will not have to endure pain in this life. How she will never have to feel something as painful as losing a child, losing a spouse or any other heartache. Rarely have I felt the Spirit as strong as I did on that hillside. I will never forget it.

When we were finished with our remarks, Evan dedicated Tabatha’s grave as a resting place for her body. He set it apart as a sacred and hallowed place, where our family can visit and have peace. Each person in attendance placed a light pink rose on her casket before her body was lowered into the ground. I felt a sense of peace and calmness. At that very moment, I knew that though her mortal body was in that tiny box, her spirit was not. What a comforting feeling to know that death is not the end of the relationships with those whom we care for the most!

Although this experience has been difficult at times, I am grateful for it. I am thankful to be a mother to a perfect baby who simply needed a body so she could quickly return back to heaven. We don’t always know the reason behind why we are given trials or why things happen the way that they do. But I know that it is all a part of a larger plan. It would be easy for us to focus on what we have lost, but I feel we have gained so much more.

Since Evan and I found out in December 2014 that we were having a baby with Trisomy 18, we have been so richly blessed. How much stronger is my testimony of forever families? How much more do I appreciate the time we have in this life? How much more closely bonded am I with my husband? Those blessings are immeasurable. And though we are still grieving the loss of our sweet Tabatha, we look forward to continuing to grow our little Wagley family.

After experiencing April 2, 2015, I feel like contacting Webster’s Dictionary and asking them to put that date under the definition of “bitter-sweet”.  Trying to explain the feeling of the happiest and most painful moment of our lives is going to be nearly impossible, but I’m going to try.

At 34 weeks pregnant, I had been feeling short of breath from the excessive amount of amniotic fluid I had been carrying that had been pushing up into my lungs.  I also had been continually feeling pain from my Deep Vein Thrombosis (DVT or “blood clots”).  I was scheduled for our induction at 36 weeks, but was worried about my health. We decided to call our doctor and went in to be induced on Wednesday, April 1^st.  With our “his and hers” maternity hospital bags that had been packed for weeks, the video camera rolling and excitement in our hearts, we checked ourselves into Mary Birch Hospital.  After a night of waiting for the medication to do its magic, we were ready to have a baby.

The next morning, our doctor broke my water. Since I was measuring 45 weeks at 34 weeks, it was like Niagara Falls.  After that, everything happened so fast.  Our sweet baby girl, Tabatha Darling was born on April 2, 2015 at 11:21am.  She was so tiny, like a baby doll, but she was our baby doll.  We dressed her.  We admired her.  We kissed her.  We snuggled her.  Then, we said goodbye.  I wish I could have gotten an epidural for my emotions because the pain was unbearable.  Just hours later, I was quickly wheeled over to Sharp Memorial Hospital next door to avoid being surrounded by noises of babies being born. As they wheeled me down the hall, I couldn’t help but sob uncontrollably the entire way.  Out of my swollen slits for eyes, I could see the look on people’s faces as we passed by.  They had no idea how I was feeling or what I was going through.  I just felt broken.  After arriving in our room, all the nurses soon exited.  Evan and I had not felt more alone, together.  Since we were both exhausted, we quickly went to sleep to avoid the excruciating pain that we were feeling.  I fell asleep in Evan’s arms, while we shared my twin-sized hospital bed.

The next morning, just 24 hours after delivering our baby, I was discharged.  The wheel chair ride out the front door was as painful as the ride I got the day before when they switched me over to the other hospital.  Leaving the hospital with an empty belly and empty newborn car seat is one of the worst feelings in the world.  Upon arriving home, Evan helped me shower.  I hadn’t showered since giving birth the day before for two reasons: one, I was too depressed, and two, I didn’t want to wash away any remnants from my little baby’s snuggles and kisses.

The following days, Saturday and Sunday (Easter), were filled with trips to the mortuary and cemetery to prepare for our baby’s funeral and burial.  We picked out a spot in the baby section of the cemetery.  The plot sits on a hillside near an adorable little growing tree overlooking the entire lush green cemetery.  We chose it as a reminder of our love, and our family.  Both of which will continue to grow forever.

A few days ago, my sister was thoughtful enough to set up a GoFundMe account for expenses that we are facing.  I cannot express enough the relief this fund has given us.  Even though we tried to prepare, we still would have had no way of covering the expenses to bury our daughter.  We feel extremely humbled and loved by the generosity of so many that have given thus far.  From the bottom of our hearts, thank you so very much.

Today is Monday and my bag still needs to be unpacked.  I just can’t bear to see the clothes, hats and blankets that my baby wore for a short time.  I know she wasn’t meant to be here for a long time, but I don’t think that makes it any easier.  Between the love Evan and I have for each other and the continuous comfort from our Heavenly Father, we will get through this.  I could continue to sit here and sob my way through each and every detail, but it would be too painful.  Though writing this was extremely difficult, we have been committed to sharing our journey and love for our Tabatha Darling from the beginning. Initially, I started this blog because I felt it would be good for me.  Being a private person, it was difficult at first for me to share our experience.  But I knew that in sharing our trial through a blog, I wouldn’t have to relive every detail by retelling our story, face to face, 500 times.  Ultimately, it has evolved into a forum for me to express my triumphs and heartaches, while hopefully helping some other families that may be going through similar trials that we have faced.

We have had two doctor’s appointments for baby Wagley in the past week.  There has only been one really big change since our last update, my belly.  It is rapidly filling up with fluid and I am officially measuring 45 weeks at 34 weeks!  Because the amniotic fluid is pushing up into my lungs, making it difficult to breath, we are officially going into the hospital tonight to be induced.

This past week our plate got a little more full.  We found out that Evan’s mother was diagnosed with Stage-4 breast cancer, which has spread to her colon, stomach and bones.  She was rushed into emergency surgery and continues to be monitored in the hospital while they determine the best course of action for treatment. Our initial thought was, “how much more can we take right now”?  The last couple weeks I have repeated in my mind over and over; “Just make your mess your message”.  This is all a part of our life story.  We have the perspective that there is a purpose in what we are going through and what we are doing here in life.  Through all of these trials we have never lost faith.  We have learned that it’s ok to get angry, but not to stay angry.  I think it is a tragedy when we don’t try to take the time to find the meaning or purpose of what we are going through.  It seems to always be there, but sometimes we are so focused on the negative, we forget the reason why. We must fight the battle in front of us and persevere.

Through this entire experience we have been able to recognize the wonderful things with which we have been blessed.  The good things have been more obvious because we have something with which to compare it.  Our lives will go on.  But not just go on, but go on with joy!  It always seems to go better than we ever could have imagined.  If you ask God for an answer and don’t get a “yes”, don’t be let down.  The opposite of “yes” isn’t always “no”.  In my experience with God, the opposite of yes is usually, “I have something better in store for you”.  I’m grateful that God has so much love for us.  The best is yet to come!

You know what they say, the only thing constant in life is change! Evan, baby Wagley and I went to the specialist this week for an ultrasound to get a detailed update on how things are progressing.  These appointments are always enjoyable for us because we get to watch our baby move around and do backflips for an hour.  Backflips?  Yes, we literally watched our baby perform backflips during the appointment.  We were informed that this was possible because I am carrying A LOT of amniotic fluid.  Extra amniotic fluid is typical with Trisomy 18 babies because they do not swallow the fluid like normal babies usually do.  To give you a little perspective, amniotic fluid is measured in cubic centimeters.  At full term, anything more than 24 cubic cm is too much fluid, and anything less than 5 cubic cm is too little.  12-14 cubic cm is ideal.  I’m carrying 33 cubic cm of fluid at 31 weeks!  To put it simply, it’s A TON of fluid! Between my ocean for a uterus and swollen elephant leg from the blood clots, I feel like I need a trip to the de-juicing room with Violet at Willy Wonka’s Chocolate Factory.  Other than that, nothing has changed significantly for the better or worse with our baby’s health.   We still have our fingers crossed for her to make it to and through birth so that we can have a little time with her.

Because of the recently found blood clots, last week we were discussing an early induction at 36 weeks.  Now with this new discovery of excess amniotic fluid added to the situation, we are considering an even earlier induction date unless my water breaks on it’s own before then.  Next week we will meet with our specialist and obstetrician to discuss everything and finalize plans.

We feel pretty overwhelmed trying to get everything in order in time but feel this may be the best decision considering my health.  Even through all of this unexpected craziness, I feel so much happiness at the end of the day because it’s another day that I can still feel her kicks and the now identified “backflips”.  I’m still so grateful to be experiencing the good even if there is some bad that comes with it.

The fun never ends!  About 11 days ago I began to feel a tremendous amount of pain in my left leg and it started to swell and turn purple.  We started doing some research online and came to the conclusion it was probably DVT, Deep Vein Thrombosis, also known as a blood clot in the leg. So that night, Tuesday night, Evan took me to the ER.  Since Evan had a pulmonary embolism (blood clot in the lung which can be fatal) 10 years ago, we were definitely sensitive to them.  I had a blood clot test done in the Emergency Room with a Doppler which came back negative.  They said there wasn’t much they could do at that point and sent us home.  But the pain and swelling continued to get worse.  A few days later, on Friday, I went to see my obstetrician to get a second opinion.  He reassured me that since the test came back negative that it was probably just the pressure from the baby coming down on my one leg. It didn’t seem right. I went home and continued to hurt more and more each day. Monday night I asked Evan to take me back to the ER because the pain was unbearable and I just knew something was wrong. They ran the same scan that they ran 9 days before during my last ER visit for a blood clot and it came back POSITIVE! I have several large clots in my left leg. I was relieved and mad at the same time. How could they have missed something that seemed so obvious? I was angry that I spent so much time in pain because they didn’t catch the clots, that to the hospital staff, appeared to be so large and easy to spot. I was in a situation where we could be faced with a pulmonary embolism, stroke or worse, death. What impact would all of this have on the baby? They quickly admitted me to the hospital early Tuesday morning and started me on Lovanox for the clots and Norco for the pain. Twice daily they monitor the heartbeat of the baby. The rest of the time, Evan and I sit in our hospital room, either playing cards, watching a movie, or sleeping. Sounds like the perfect vacation, right?!  I feel so blessed to have my husband here with me through every step. He’s a trooper. Taking one for the team, sleeping on the “mini-couch” as he refers to it, being bored from the monotony of doing practically nothing all day, and tired of the cafeteria food, but I know there is no other place he would rather be. That helps me to rest easy. Thank goodness for his job and the ability to be with us through this whole ordeal. Having him as my support system has made this entire experience much more manageable, and somewhat pleasant. I wouldn’t trade him for anything in this world; expect for maybe a spa day followed by all you can eat Sushi Deli.

It’s now Thursday and I hope to be released before the weekend but we won’t know for sure until they see how my blood clots have responded to the treatment.  I have three really big clots and several small ones. Because of the pregnancy, I am not able to be on regular blood thinners. Once I leave the hospital, I will have to take shots twice a day for the duration of my pregnancy to keep the clots under control. This morning I got to “practice” giving myself the Lovanox shots. Once I deliver, I can take more aggressive blood thinners for one to three months, which will ultimately help to dissolve the clots.

During my entire pregnancy, I have been extremely active including 4-5 mile walks 5 days a week. Now walking all the way to the bathroom 6 feet away from my hospital bed is the extent of my moving around for now. This is not just a physical ailment; it becomes more difficult mentally to stay positive and hopeful. Being cooped up in a hospital room all day is not my favorite thing in the world. But knowing that there is a light at the end of this painful clot-filled tunnel, is somewhat of a relief.

When I saw my doctor last Friday for the second opinion on my leg, we discussed plans for baby Wagley’s delivery. We decided that we would induce baby Wagley early. We are tentatively looking at week 36 as the due date. Because the baby is experiencing some degree of heart failure, we feel we would have a better shot at spending some time with her if she comes earlier rather than later. Under the circumstances with the blood clots, it also gives me a better timeframe of using more aggressive means of dissolving them.

Just as I was starting to feel defeated after a few days in the hospital, this morning I over heard a few nurses in the hallway talking about a woman that was being released from the unit who came in a few days ago who could no longer feel her baby moving.  She is now leaving the hospital without a baby.  I don’t think any situation is easier than another, but I feel grateful for the time I am able to prepare mentally and emotionally for what we are experiencing, and will continue to experience, in the coming months.  I look back on the day that we found out about the Trisomy 18 diagnosis.  We were heartbroken. But over the last couple months, it has definitely strengthened us.  Being able to discuss options with Evan, cry here and there, and be able to work through this cycle of emotions has been a huge blessing.  I feel like I’ve said this before in previous blog post but if we can learn to endure through the hard times it will strengthen us beyond measure.  It’s difficult to quantify how much we grow when hard things happen, but it is measurable in some ways.  If we choose to fight the inevitable, I believe it will weaken us and eventually break us down.  I’m grateful for my husband’s help and love through this hard time.  If we aren’t prepared for these hiccups that happen to us we are bound to struggle and have a more difficult time when things get tough.  This time on earth is a proving ground.  We are meant to learn how to deal with the thoughts and emotions that come from our experiences.  As we do so, our capacity to handle hard things will increase.  I believe that whatever situation we are going through is to prepare us for something greater.  Through the difficulties that we have faced with this pregnancy, we have continued to feel positive.  My testimony of the love my Heavenly Father has for me is real. Knowing that we will be together as a family forever gives me a reassurance that this is not the end. Instead, it’s a preparation for the future.

It has been hard for me to sleep in this hospital bed.  The discomfort of just being pregnant, the nurse giving me medication every couple of hours in the middle of the night, and all the constant beeping of all the machines I’m hooked up to makes for less than ideal sleeping arrangements.  I say this in hopes that my story doesn’t sound too muddled and incoherent!  I will continue to keep you all informed as we get closer to Baby Wagley’s next big doctor’s appointment in about a week.

Exposed is probably an understatement for how I felt as I pressed “enter” to publish our first post about baby Wagley, but knew it was necessary. I have always been a very private person but so many of you have made it easy for us to be open and share our experience. I once heard a saying that I love by Camilla Kimball that I try to live by, “Never suppress a generous thought”. Whether it be a thoughtful card in the mail, beautiful flowers on our door step, a yummy prepared dinner or a sweet text, we are tremendously grateful to all of you who have been there for us.

We continue to have numerous doctors’ appointments to monitor our little girl’s progress. During our most recent appointment with the specialist, we received further details on how things were progressing with baby Wagley. There were a few changes since our last visit. They were able to look at her heart closely and see that the two main valves in her heart, the pulmonary and aortic, were coming out of one side opposed to the norm, which is one coming from each side. They found fluid around the lungs and abdomen, which are early signs of heart failure. The specialist was able to give us a 3D view to show us, in detail, what she looked like. She looks like a completely “normal” sweet baby except for her ears which are a little smaller and her fingers and hands which are clenched.

As I was laying there for about an hour on the table during the exam, I watched my husband’s face light up each time our baby entertained us with something new. At some points, I think I enjoyed watching his reaction and expressions more than watching the baby. There were a few moments that I noticed tears in his eyes. Once when she waved at us, another time when she rubbed her hands on her face and at one point when her little legs were crossed. These weren’t streaming tears but the kind of tears that get stuck and slowly fill your eyeballs half full. My heart usually breaks when I see him like this but in that instant a really strange feeling came over me. I felt the happiest I had ever felt in my entire life. It was an offbeat but special experience. I was laying there thinking, “Shouldn’t I feel bitter? Heartbroken? Discouraged?” But no, I felt happily pregnant, watching my baby in action and experiencing it all with the love of my life. I felt content. My heart just felt so full! I know we are being protected and I’m so grateful for God’s help. This situation seems like it should be much more strenuous on us but I feel protected from the pain. This is not to say that I don’t experience challenging moments. I’m human, of course I do, but I’m just saying it’s not the “I’m depressed and I hate the world” type of pain.

My “bubble”, as I like to call it, is pretty thick. But one thing that can make me feel agony through that bubble from time-to-time is planning our daughter’s funeral. I hesitate to even be so open out of fear that it will make people glum. I don’t want that. I just want to share our experience and hope that positive things are mostly remembered. But again, I am human and I feel it’s an important part of our process to let you know what we are experiencing weather it be good or bad. We were told there is a chance our baby will most likely be stillborn. If the baby does make it full term, she most likely will only live for a very short time. There are other possibilities but these carry the highest probability in our situation. We have been planning for her funeral no matter what the outcome may be. It’s difficult for me knowing that the fragrant flowers on her casket will be the only ones she will ever receive and never from a boyfriend or her husband. Shopping for that little white dress that I plan to bury her in will be the only white dress she will ever wear, instead of the one she should have worn on her baptism day and wedding day. Psychologically, this is not an easy task, but like I have said, I feel at peace and protected most of the time. Life is strange, but I’m learning that you have to deal with whatever you’re given. If you don’t, well…. I assume life could be a lot worse being stuck in your own misery.

Over the past few weeks we have really tried to slow down and enjoy every minute with our baby girl especially on weekends. I heard a talk in church a few weeks ago by a woman in our ward about how many breaths a person takes in a lifetime. On average, a person takes about 672,768,000 breaths during the course of their life. It made me think hard about what we do with each breath. Are we breathing frantically over stress of a project at work? Wasting it on yelling at your spouse over insignificant things? Screaming at your child over petty stuff? Or are we saving those breaths to listen to a friend who is having a worse day or life, for that matter, than you? Are we exerting ourselves for no reason or using our breath to do good? As I thought about how my breaths are used per minute/day/year and what a lifetime of my breaths would be used for, it made me think about the impact our daughters breaths would make. What purpose would hers serve? What difference would she make? Will she even have any breaths in this life? Regardless of if she ever takes her first breath or not, I hope sharing her story with the world makes an impact.  Whether it be one person or one hundred people, I feel her purpose in life would be fulfilled if we all learned something big or small: how valuable life is, how insignificant minor things are or just loving your children and spouse a little more.

Whatever it might be for you, I feel grateful that she has and will do so much for my husband and me. I know she has already changed my outlook on life forever. Someday in the near future, I will be there for her first breath and for her last, but for now I am grateful for this time I get to breath for our tiny baby girl.