Thursday, June 27, 2013

Alaina's Story, by her mama

Post by Tami (adapted from her Journal on CaringBridge)

In June 2012, we found out we were expecting!

Unfortunately, we found out in September, during her 20 week ultrasound, that Lainey had a severe heart defect with complications. The condition was called Hypo-plastic Left Heart syndrome (basically the left side of her heart was very under developed and right side must do all of the work) 2nd issue is Pulmonary Valve stenosis. (the pulmonary valve, which transfers oxygenated blood to the lungs and heart is under developed as well) The stenosis is causing a 3rd issue called Hydrops which means she had fluid around her lungs, stomach, and skull. This caused her lungs to mature slowly. There were only 4 documented cases of this combination of issues in the world. She was special already!

She could get oxygen while inside of me but not after she was born. We received devastating news around Halloween when we found out that because of these issues, she was going to need a heart transplant once she was born.

I was in the hospital from November 27th on, for monitored bed rest and until I delivered. We needed to get her big and strong enough for her new heart which meant we needed to get her to at least 36 weeks. She was on the National Transplant Registry list. It was bitter sweet knowing that one has to die for one to live. I can say now, while going through this, I understand the love & strength that it takes to be a donor family and would do the same for someone else.

We prayed for Alaina Rose everyday. Some days we were sad. Some days we were angry. But most days we were optimistic and excited to meet our special baby.

She was born on December 25th, 2012 at 8:27am. She was fighting for every minute and every breath. It was so hard to see but it made me realize how much she wanted to be here and be able to have the life she deserved.

Beautiful little Lainey <3

Even at 3 days old, under all of the equipment you could see her fighting a fight that we couldn't possibly understand.

She was baptized on January 2nd. We had faith that God was protecting her and guiding her every step of the way.

Alaina had a procedure done on her heart a few days later. They were going to open up her very narrow pulmonary valve with a balloon type catheter. The purpose was to help increase the blood flow and cause less stress to her sick heart. We hoped it would also help lessen the fluid (hydrops) that was still trapped in her little lungs and body. We needed her to get stronger so that when a heart became available, she was as strong as she could be to undergo the transplant.

The procedure went exactly how we wanted it to go and she came back to her room, heavily sedated but still gorgeous. We hoped this would help her lungs and make her strong enough to receive a heart ❤.

Her lungs were maturing and we were headed in the right direction. She was making her Doctors smile and keeping us all on our toes. She was a fighter, that's for sure!

We were completely head over heels in love with our beautiful baby. She was  inspiring and we were so blessed to have her in our lives.

On January 14th, our beautiful Alaina Rose became an Angel in heaven. She fought harder than anyone I've ever seen. We know she's not in pain anymore.

One person's "so little" can be another persons "everything." That's how we feel about our time with Lainey.
Alaina Rose lived for 20 days outside of my body. I was blessed to have gotten to love and know her for 8 1/2 months before that.

We are forever changed by the time we had with her.

My biggest hope is that in one of those moments when she could hear us talking to her and was trying so hard to open her beautiful eyes, she saw her mommy and daddy smiling down on her.

I cling to the fact that I can feel her now, with her beautiful eyes wide open, smiling down on us.

We miss you every minute of every day, Lainey. Thank you for your love and for touching so many with your beautiful heart. 

*You can read the entire story on their CaringBridge website: HERE.

Tuesday, June 25, 2013

Peyton's Story, by her mama

Post by Marcia

Our story begins in July 2010 when my husband Kyle and I found out that we were expecting our third child. It came as a shock for us. Our two older daughters were 7 and 5 years old, and we had just finished cleaning out our basement of baby items and clothes two months prior, figuring the baby days were behind us. Kyle had just turned 39 and I 38, and we had not anticipated in having any more children, but then a little surprise came into our lives. Our two daughters, Lauren & Kaitlyn were very excited to be big sisters, and we learned that our little bundle of joy was due to arrive March 28, 2011.

I was somewhat nervous and concerned from the beginning about the baby’s health given my age. However, I pushed my fears aside, especially as we ended the first trimester and everything was fine. I did have some bleeding when I was between nine and ten weeks along, but the bleeding subsided, my cervix was closed, and baby’s heart was beating away. The second trimester came along though, and everything started to change after an 18 week ultrasound in October 2010. A “lemon” sign was present on our baby’s head (a marker for spina bifida), and she was one and a half weeks behind in growth.

We were referred for another ultrasound the following week at Maternal Fetal Medicine at a hospital thirty minutes away. When the second ultrasound was completed, no lemon sign was present, but our baby was one and a half to two weeks behind in growth, so we had to come back every three weeks for her growth to be monitored.

In November, at 22 weeks along, we reported for an ultrasound. This time, it was noted that our baby girl, who we named Peyton Elizabeth, was two weeks behind in growth, and that she was now displaying an echogenic bowel and an enlarged kidney. While we were concerned with the news we were getting, we still opted to not pursue an amniocentesis yet. We felt that the doctors were being overly cautious. I did consent for blood tests to determine if I was a carrier of Cystic Fibrosis or if I had any viruses in my body. The results did come back that I was a carrier of Cystic Fibrosis, but we kept a positive mindset. We still believed that Peyton was going to be fine plus nothing was confirmed yet.

Our next ultrasound was on December 13, 2010 at the start of my 25th week. That day we learned something serious was going on with Peyton. During the ultrasound, the doctor found a heart defect (VSD) in her, and Peyton was now five weeks behind in growth. She had hardly grown since her last appointment. We became highly concerned at this point and opted to have the amnio that day. Cystic Fibrosis was no longer the suspicion, but Down’s Syndrome or another chromosomal disorder.

We were scheduled to come back in three weeks for another appointment. We were very worried when we left MFM that day for our daughter’s health. The news came on the afternoon of December 15th when the genetic counselor called us. She told us that Peyton had Trisomy 18. I had never heard of this disorder before. The genetic counselor went on to say over the phone that babies do not survive, and that our baby would die either before she was born or shortly after. I cried, but then went into complete shock and disbelief. I couldn’t believe this was happening that I had just heard those words. It felt like an out of body experience, like it was happening to someone else, not us.

It was at this time I started sharing the news with our friends, family, and my coworkers through word of mouth and even Facebook. I felt the need to get Peyton’s story out, and we needed all the prayers we could get for our little Peyton. I began to research about Trisomy 18, and had read that a small percentage of babies do survive to birth, and live sometimes a few hours, weeks, and years. I prayed
that our baby Peyton had the strength to beat the odds. I just wanted her to stay as long as possible, but I didn’t want her to suffer and hurt either.

Because Christmas was upon us, I decided that we need to make the most of the holiday season, and celebrate it with joy and happiness for our precious Peyton. I did my best to push sorrow and distress aside, even though I felt her kicks and movements starting to become weaker. I knew it would likely be Peyton’s only Christmas holiday with us here on earth, and I wanted her to be surrounded by peace, tranquility, and joy in her remaining days here.

Tuesday January 4, 2011 was another day for an ultrasound at MFM. I was now 28 weeks along. I was anxious to see how she was doing, to hear her heartbeat. However, we got the horrible news that day. We were told that Peyton no longer had a heartbeat. Our little girl was gone. It was devastating. I thought she was still moving inside of me. In fact, I would feel these phantom kicks & movement for the next several months. I couldn’t believe her death happened so quickly after we received the news of her diagnosis. I didn’t want her to be gone yet. The doctor at Maternal Fetal Medicine sent us to the lab while in tears to have my blood drawn and then sent us home to wait for an appointment in the afternoon with my regular OB so that we could make arrangements for delivery at our local hospital. I have to say that the treatment we received from MFM that day and even from the phone call of her diagnosis & prognosis felt cold and insensitive.

I wasn’t able to report to the hospital until two days later, Thursday January 6, 2011 at 5:00 a.m., as we were told that the rooms in the maternity wing were full. My labor lasted close to 36 hours. Peyton was born still on Friday January 7, 2011 shortly after 5 p.m. Peyton’s body was in pretty poor and fragile condition due to the effects of decomposition on her little body. She likely passed between 27 and 28 weeks and then it was nearly another four days from the time we learned of her death until her delivery. The effects of death on such a little baby were not pretty. I had wanted our family and girls come hold Peyton, but in the end, Kyle and I thought it was best for them not to see her in such a state. It was upsetting to see her that way, but it was important for us as her parents to hold her and say our goodbyes.

We did take some photos of us holding her, and the hospital took footprints as well.

Her little feet were in perfect condition. It would be weeks later that I would regret not taking photos of her precious little feet. There was no NILMDTS in our area or anyone to guide us in taking photos. In fact, our local hospital only had a polaroid camera available. Luckily, we did have our digital camera. Our priest came and blessed Peyton. The hospital then dismissed us at around 9 p.m. that very evening, and we left with a memory box instead of our little girl. Our hearts were broken. I remember kissing her on my way out the door and walking to the elevator with the nurse and being escorted to the door, but I remember nothing of the way home. Two days later we met with the funeral home and the priest to make funeral arrangements and decide upon a burial place in the cemetery. We held Peyton’s visitation three days after her birth, on January 10, 2011, so that we could thank our family and friends for their prayers and support as well as have a chance to talk about Peyton. Her funeral followed the next day on January 11, 2011 where we had a graveside service. I remember tears in my eyes and holding my surviving children close to me. I remember crying out in the end that I wanted her back with me. I remember touching her casket before we left the cemetery to go home.

In the first month or two after Peyton’s death, we were in so much shock and we felt completely numb. We kept hoping that we would wake up one day and find that it was all a nightmare. But that day never came, and slowly we left the shock and numbness stage, and began to feel the intense sadness and pain. We began and continue to find ways to express and cope with our grief. Grief over the loss of ou beloved baby girl is not an easy journey, but through all of it, from Peyton’s diagnosis, her short life, and her death, we felt Peyton had an important message and legacy. We saw how she affected people from our friends & family to strangers we had never met, once they heard her story. Through her life and death, she reminded us all of the importance of love, faith, hope, and compassion. We hope to continue to spread this legacy of hers. She truly is a special and most precious baby. She is loved and missed greatly.

To read more of our story and my journey, visit our Beloved Peyton’s website.

From Peyton’s funeral service cards…“How very softly you tiptoed into my world. Almost silently, only a moment you stayed. But what an imprint your footsteps have left upon my heart” ~Dorothy Ferguson

Friday, June 21, 2013

Aubree's Story, by her mama

Post by Sam

We received wonderful news the first weekend in February. Our second baby was on the way. We had been hoping and praying for a sibling for DD. I anxiously awaited the first few weeks. Having lost my first pregnancy at eight weeks, I was really nervous until I had my first doctor appointment. Once we got to hear the baby's heartbeat and my blood work came back perfect, I finally started to relax and enjoy just being pregnant. Ok, I could have done without the morning sickness, but overall I was enjoying the process. I had been a nervous wreck the whole time with DD and never really enjoyed just being pregnant. This time was going to be different.

We passed the first trimester and made our official announcement to family and friends that our new little pumpkin should be arriving in October. Just in time to celebrate our fourth anniversary. We had kept everything from DD and intentionally purchased many things as gender-neutral as possible so they could be used for several kids to come. DH and I started to pick out names. Boys names are still something we can't agree on. But just like with DD, we found one single girl's name that we both loved. We were excited to find out the gender at the end of May so I could begin shopping all the summer garage sales for boy clothes if we needed to. I made an Amazon registry for the handful of items we would need for another baby. We started planning out arrangements for DD's room since she would need to share in our tiny house.

The last day of April I went for my routine 16-week checkup. I checked out just fine, but something was odd about the baby's heartbeat. The doctor still couldn't pick it up on the dopplar, so she took me in for a quick scan. What we saw was a beating heart, but even in my extremely limited knowledge of anatomy I could see something was very wrong. The doctor set up an appointment with the diagnostic imaging center for a better look the next morning. At that appointment we learned our baby's heart was not functioning correctly. The ultrasound technician had the actual doctor come into the room to explain to us what was happening. The next morning we were sent to the maternal fetal specialist for a better scan of the heart and more details on where to go.

The maternal fetal specialist confirmed our baby's heart was not functioning properly. They gave us an initial diagnosis of situs inversus (reversed organs), HLHS (under-performing heart chamber), and complete heart block (malfunction of the heart's pace maker). The doctor did an amnio test that day to see if these defects were caused by genetic factors or just random chance. Over the next two weeks we got the results of those tests back in pieces. What we learned is that our baby was fine as far as the genetics were concerned. We also learned that we were having a little girl.

Aubree Grace

Three weeks after our initial specialist appointment, we had another at the same place to see how Aubree was growing. Her growth was right on-track, all organs were present, and things seemed to be going ok. Except for her heart. The heart had started going into heart failure due to all the complex issues. The functioning muscles of the heart were trying to compensate for the under-performing muscles. This resulted in thickened walls of the heart that could not beat properly because they were too stiff and spongy, causing an even lower heart rate around 80 bpm. Due to the heart not working properly, fluid was starting to accumulate in several places within the baby - in the chest cavity around the heart and lungs, and in the belly. The doctor told us her chance of survival was almost 0% barring any kind of miracle. But just to be sure, he consulted with a pediatric cardiologist.

A week later we had an appointment with the pediatric cardiologist. We learned the initial diagnosis was not quite correct, but the issues present were even more severe than originally thought. Aubree has heterotaxy and several resulting issues. Her heart rate was down to only 50 bpm. Her belly is swelling with fluid, and the accumulation around her heart is causing it even more distress. Even if she could survive to full-term she would need complete reconstructive surgery on her heart and the arteries & veins. They recommended that we continue my normal course of care with the OB I typically see, and recommended palliative/hospice care for Aubree.

This month has been one hell of a roller coaster. I feel like we have lived several years in just the span of a few weeks. We went from excitedly expecting our second baby to facing the heart break of realizing we will not get to bring Aubree home with us. Through it all, DH and I have grown closer together and our faith has also grown. For now we will enjoy the times when we get to see her on "camera", we cherish our pictures, and we plan for the day when we have to say hello and goodbye at the same time. I love her kicks and flips.

**To follow Aubree's story, please go to Sam's Blog: UnSuperMom

Wednesday, June 19, 2013

Epiphany Art Studio Giveaway!

This giveaway is now CLOSED. We have a winner! Sam, mama to Aubree Grace, you've won! Please send a private message to All That Love Can Do within 48 hours to claim your prize! 

If you didn't win, you can still purchase something beautiful, just go to Epiphany Art Studio!
It's giveaway time!

This one is open to all babyloss families.

Enter to win a $15 credit towards the purchase of a beautiful piece of original artwork from Epiphany Art Studio!

To enter:
1. Like All That Love Can Do
2. Like Epiphany Art Studio
3. Comment below with your baby(ies)'s name(s) and the name of your favorite piece (you don't have to purchase that one).
You can find the works currently for sale HERE. 

Good Luck!!

We asked, you answered: Sophia's Diagnosis

ATLCD asked: What was your experience of hearing the news of your baby's diagnosis? 

Shannon answered:
The first weeks of carrying Sophia were rough. So-called morning sickness was all day sickness. I had experienced the same while carrying my older two children and was able to function pretty well and continue being mom and working. I had bleeding and spotting constantly and twice so heavy that I thought I had surely miscarried. Each time I was reassured and my whole heart smiled to see that tiny beating heart on the ultrasound confirming she was still with us. My husband and two kids wanted a girl and we just referred to her as a she long before we knew the gender. When asked if I wanted a boy or girl my answer was always the same. I just want a healthy baby and to skip a NICU stay this time. We counted down the days until we had a routine anatomy ultrasound scheduled at the area perinatologist office and would learn the gender. I was about 20 weeks along and was followed by the high risk specialists just as a precaution and after having preeclampsia twice. I was comfortable with the perinatology team we would see, they had taken excellent care of us before and I had also developed a professional relationship with a few working just downstairs as a maternal/newborn RN at a large hospital. I honestly wasn't excited about the gender, I just wanted confirmation everything was okay.

December 4, 2012 we signed in for our appointment. We waited in the big waiting room what seemed like forever, there is a gorgeous view of the St Johns River that I kept focusing on, trying to calm my nerves. My name was called and vitals checked, again I heard the spiel from the nurse practitioner on preeclampsia and what to expect and such. Back to the waiting room we waited awhile longer and I splashed some water on my face in the bathroom and tried to ease my worries. It was finally my turn, I would finally see my baby to be. The ultrasound started off normally. Measurements, hearing a beautiful and strong heartbeat. I began to relax, feel like I had been so worried about nothing. She kept taking a few more measurements and looking at the baby's hands. That was what sent the overwhelming feeling that something was wrong with my baby back to me. Why would she keep looking at the hands? We learned it was a girl and my husband was over the moon. I knew my kids would be too. I was still stuck on what was wrong. She took a few more measurements, this ultrasound was now WAY over the length of what it should have been and I remember the table I was laying on getting so hard and uncomfortable, looking at my husband bursting with joy he was having a baby girl and just feeling terrified. I didn't want to ruin his beautiful moment if I was worried about nothing.

We didn't wait long after the sonogram and the Doctor came in with the sonographer to review the findings. This was typical at this office so I just laid there waiting to hear his warm familiar voice ease my fears and tell me everything was okay. Not so. He very delicately showed us the images of the cysts on her brain and the single umbilical artery , both of which I knew had to be watched but could still mean a healthy baby. And then he referred to them as soft markers and then explained some other markers she had. For what I thought? He explained separately they didn't mean much but together it could be Trisomy 18. And then that he thought it was very likely this was trisomy 18. My world stopped, my heart sank and I sobbed and sobbed. I knew exactly what that meant, there was little to no chance I would meet my baby girl alive. This man who I was looking forward to seeing had just delivered my worst fears. I knew that doctors could be wrong and miracles could happen but I knew this doctor well and trusted he would not suggest such a diagnosis unless all things were pointing that way. He used the words "incompatible with life" when describing my baby girl who was clearly alive and moving, heart beating right in front of us on the screen. We called a few family members and choked out the words to tell them what was going on. Then I called my job which was in the same building and let them know I wouldn't be in for a few days. I could barely speak the words Trisomy 18. At that point I realized it was December 4, the day my sweet grandmother had passed onto heaven just a few years before. She was the most kind and loving woman to every person she came across and I longed to hear her sweet voice or be wrapped in her strong hug again. She would know a way to bring us comfort in this. I insisted on an amnio that day so that we could have a confirmation of this diagnosis and prepare ourselves for what this would bring. The office accommodated our wishes and after lunch I was whisked right into a room, no waiting or sitting staring at the river this time... We at no point considered ending our baby girl's life but did want to be prepared for decision making. I cried thru the entire amnio which hurt a great deal more than I expected and it was after that, that I think my husband grasped the severity of the condition we were dealing with.

We went home, crawled into bed and cried together mourning the loss of a healthy baby girl. That night, desire to have a healthy baby that didn't have a NICU stay changed into just wanting to have the opportunity to meet my baby girl alive. That was all I wanted. Of course I would be over the moon if she was one of the very few who live with T18, or was well enough to be assisted in NICU. The overwhelming odds that she would be gone before we would meet was so hard to take in.

T18 was confirmed and I went on to feel chosen to be Sophia's mother, called to love her and give her life meaning and respect as God had planned, however long or short that was. I will continue to do so all the rest of my days.

Sophia Grace Rector, born into heaven Feb 19 2013.

Tuesday, June 18, 2013

Babble's Top 25 Pregnancy Facebook Pages

It was such a surprise to open the virtual mailbox this morning to find a note from a member of the Babble Editorial team, saying: As part of our annual top list series, Babble has rounded up this year's Top Pregnancy Facebook Fan Pages of 2013 — and yours is one of them!

What an honor to know our words and stories are being heard!

It so exciting to have another way to reach the families who need us (although I'd gladly accept this never happening again to any family!).

Every family facing the heartbreak of having to say hello and goodbye should know they are not alone, they are loved and there is help.

Go check out the other 24 pages and show your support!

Our heartfelt Thank You! to the editors of Babble for this amazing honor <3

Savannah's Story, by her mama

Post by: Rebecca

On January 26 we found out that we were expecting and that on October 7th we'd be bringing a new life into this world. The first few months were an incredibly exciting time filled with belly pictures, announcement planning, and multiple appointments with our doctor. There was even a blood test that told us the gender and on April 5, over a plate of chicken pot pie and Fish & Chips at Meg O'Malley's, we found out that we were having a little girl!! From that moment on she was no longer just our baby, she was our daughter, Savannah.

From there it was a whirlwind of activity as we were able to narrow down our search for babythings and actually start planning her nursery. We were so happy and care free that when our OB had me give blood for a test that detected the possibility of neural tube defects (NTD's) we didn't give it a second thought, until the results came back positive.

Our OB told us that Savannah had an abnormally high number of AFP cells in her system which was cause for concern and that she was scheduling the next available appointment with a high-risk doctor. That appointment was a tale in itself, but to summarize the visit; Savannah was diagnosed with an NTD called anencephaly; a condition where the brain and skull never fully develop, affecting only 1 in every 1000 births and giving babies with this diagnosis only a few hours to live under best case scenarios.

Devastation doesn't even begin to describe our initial feelings. We had no idea what to do or who to talk to, all we knew was that we wanted a second opinion and we wanted the doctor to be wrong. We couldn't understand; this sort of thing only happens to people in the news, how could we be part of the .1%? Regardless of the outcome of the second opinion, one thing rang in our minds like a bell: We want to meet our sweet Savannah so termination is out of the question.

We were very blessed in the fact that we were able to get the second opinion right away and while the diagnosis stayed the same, the whole appointment was a wonderful, therapeutic experience that we will never forget. We were still devastated  but we started to focus on what Savannah had rather than what she didn't have. God has given her life, and it is our job as parents to help her live it.

We know that this will not be an easy journey. Each day comes with a new set of challenges, emotions, and joys. However, we are resting on the promises of God, knowing that even when it does not make any sense to us, he has a plan and a purpose! Right now we need your words of encouragement, prayers, and support as we embark on this journey to celebrate our sweet Savannah Joy.

*Please follow the story on their blog, Sweet Savannah Joy.

Monday, June 17, 2013

Aaron's Story, by his mama

Post by Katie.

We found out in June 2012 that we would be welcoming our third child into our family. We went to our ultrasound on October 9, 2012 with our two young daughters expecting to find out whether we would be having a little brother or a little sister for them. What we found out is that we probably wouldn't get to bring home a baby brother or a baby sister.

We found out that day that our third baby had a condition called anencephaly in which the brain and skull do not form completely. They aren't entirely sure what causes it, but know that folic acid plays an important role in helping to prevent it. It is 100% fatal, but some babies live for minutes, hours, days or months while others will be born sleeping. We made the decision that day that it wasn't our choice to determine how long our baby would live - we chose to carry for as long as God would allow.

At that first ultrasound, the tech wasn't sure on gender because baby wasn't cooperating (as it turns out, there was no real cooperation on any of our other ultrasounds but the guess was 'reasonably sure' we were having a girl). We chose the name that we had already planned for our third little girl, but our 3 year old quickly informed us that her baby sister should be named "Aurora." She was so adamant that we decided to let her name her sister and from that point, our baby was "Aurora."

The rest of the pregnancy went as smoothly as possible and there were really no complications. On February 19, we had a check-up with the OB in the afternoon and she said that I was only about a "fingertip" dilated. I had been having a few contractions here and there, but nothing much to worry about. On the way home from the appointment, I was having a few more but told myself that they were just because I was a little dehydrated and needed to rest. That was perfect because my husband and I had planned a date night - steak dinner, shopping, a babysitter, and a hotel room. (It was the first real date we had planned in a VERY long time!)

By the time we got home from the doctor, the contractions were a little more intense...but I was determined to get my steak dinner! Our date was planned for the same city where our preferred hospital was located so, just in case, we tossed our hospital bags in the car before we left. About fifteen minutes into our drive, I realized that those "barely contractions" I'd been having all day were about 4 minutes apart and lasting nearly a minute. I called the doctor and she told us to come in and get checked. Unfortunately, we hadn't eaten dinner so we made a quick stop at Arby's to grab a sandwich and then were off to the hospital.

We made it up to triage and they took us right back. Shortly after we got there and just before the doctor came in, my water broke. She checked me (at this point, contractions still weren't bad so I expected to be dilated to about 4-5cm) our surprise, I was fully dilated and she could feel "baby parts!" They put me in a wheelchair and rushed us to a room.

The room was barely set up because things had happened so quickly - we hadn't even brought up our overnight bags because we thought we would have plenty of time!! There were only a few nurses, my doctor, and my husband in the room with me. The contractions were still very mild and we could still hear baby's heartbeat on the monitor until about ten minutes before birth. The room was so peaceful and, like another momma put it, "felt like being in the presence of an angel." At 6:30pm on February 19, 2013 our first son Aaron Michael was born. (Apparently, he had been cleverly hiding at each ultrasound because we all got a surprise when my husband got ready to cut the cord and we discovered that "Aurora" was actually "Aaron!")

We got to spend the next 22 hours with him before entrusting him to the gentleman from the funeral home. We introduced him to his sisters, aunts, uncles, Mamaw and friends. We took footprints, handprints, molds, NILMDTS photos and told him so many things we wanted him to hear in the short time we got to spend with him.

One week later, our families and friends joined us in the celebration of a Catholic funeral mass for our little boy. It was one of the most beautiful services I have ever seen and felt the most incredible peace that day as we laid our only son to rest.

We continue to talk about "Baby Aaron" and his sisters will always know about their baby brother in Heaven. They know that he had a "boo-boo" on his head that the doctors couldn't fix and they have told us that "God and Grandma rock-a-bye Baby Aaron to sleep every night, then put him in his special crib." They enjoy taking special things to him at the the cemetery and still tell us something that they miss him. He will always be our little boy and we will always miss him but we are so grateful for the time that we were given with him and will always treasure the blessings of his memory.

*Read the full story on Katie's Blog: One Angel's Journey.

**Katie also makes beautiful paracord bracelets in memory of babies gone too soon. Find more information about Aaron's Angel Arms (and order yours today): Website& Facebook

Sunday, June 16, 2013

Father's Day Giveaway!

UPDATE: This giveaway is now CLOSED. picked: Alex Orbacz & Scott Morash as the winners! Please send a private message to the All That Love Can Do Facebook page within the next 48 hours to claim your prize! Congratulations!

It's giveaway time!

*In honor of the daddies who are facing a day that's not how it should be.*

This giveaway is open to all babyloss fathers (or the father of a baby being carried with a fatal condition).

We are giving away TWO copies of the book, A Guide For Fathers: When a Baby Dies, by Tim Nelson.

To enter:
1. Like our Facebook page: All That Love Can Do
2. Comment below with the name of the Daddy being  honoring today and the name of the baby(ies) you're missing <3. 

Good luck!

Thursday, June 13, 2013

Peyton's Story, by her daddy

Post by Kyle

In 2010 I was wrapping up my career as a store manager for a national drug store chain. Our oldest daughters were 7 and 5 at the time. We normally take a family vacation to Top Sail NC with my parents and sister, brother in law, niece and nephews. But this year we decided to take a special vacation and booked a 4 night Disney cruise and 4 nights at the Magic Kingdom. We were so exhausted after returning home that I took another vacation a week later. It was about three weeks later that we learned that my wife was carrying our third child. We were excited and nervous as we are not “spring chicks” any more.

We went for our first ultra sound that August. The results came back and we were sent to a bigger hospital about 30 miles north of where we live. This hospital has a maternal fetal medicine unit. We were told that because of our age, our child was at increased risk of chromosome disorders. Some markers from the first ultrasound concerned our doctors. However they were very positive after the second ultrasound done at the bigger hospital.

Just when we thought we could relax, I took my wife to the hospital because she was bleeding excessively. We were told there was nothing we could do but wait. After everything calmed down, we were told the danger had passed and we were sent home. This cycle of stress followed by brief periods of relaxation, continued for the next four months.

During this time I officially left my job and started back to college. That alone was stressful enough. We were then to report for an ultra sound every three weeks.

We did find out that we were expecting another little girl. We named her Peyton Elizabeth. (Which seemed fitting as we had just donated the last of the little girl clothes to the local Hospice store). It seemed that about every other appointment, we were given bad news, everything from Downs syndrome to cystic fibrosis to heart problems. In the meantime my wife and I were both sent for blood work and met with the genetic counselor, to try to rule out potential problems. We saw different doctors on a regular basis; I suppose it was whoever was on call.

Finally in December we were strongly encouraged to have an amniocentesis completed. Of all days, there was a snow day that day and my oldest two daughters were with us. They didn’t know what to think.

It was about a week later that we received the phone call that would change our world forever. And yes I said PHONE CALL. The genetic counselor was the one to call us that our daughter was diagnosed with trisomy 18. We were not given much information other than it was 100% fatal. We were told that most babies were lost in the first trimester.

It was at this time that the Disney movie Tangled was in theaters. Naturally already having two daughters, who are very into Disney, we went to see it. It may sound strange but a movie about a lost princess really touched all of us. We went to watch Tangled one more time on New Year’s Eve. My wife says she was moving on that night.

Two days later we arrived for our three week ultra sound. The tech barely started when she excused herself and called the doctor on call. We knew there was something wrong. As the doctor entered the room he exclaimed “well, we knew this was gonna happen, she’s dead”. All I could do was comfort my wife as she burst into tears. We were told to contact our regular doctor on how we were to proceed.

The rest of the day (and really the next couple of months) I really just felt numb. This happened on a Tuesday and we were told my wife would have to deliver naturally and she would have to wait till Thursday January 6 at 6am. We did as we were told, all the while I tried to make my wife comfortable and take care of my two oldest daughters.

The day did not go as planned and my wife was in labor for over 36 hours. She was on a lot of medication as the doctor was trying to make her comfortable. About 4am the doctor came in, in tears herself, as she told us that because it had been days since our daughter had passed, we may not get a baby in one piece. And because my wife had been in labor for almost 24 hours it was too late to perform a c-section as there was a high risk my wife could bleed out and I would lose her too. It was about that time that my wife had her first anxiety attack, a very vicious belief that she was going to die. The doctor medicated her more. My wife slept most of the morning. It wasn’t until the nurses rotated again that evening that our nurse helped us. She got my wife up and moving. And finally it happened, and Peyton was delivered on Friday evening, just like her older sisters. All my girls were delivered on a Friday evening. It was January 7,  2011. When my wife delivered we were left alone in the room with our little girl.
Daddy Time <3
I called our Priest and he came right over and blessed the body. And by 9pm we were headed home. It is the most horrendous duty of a parent to bury their child. But that’s what we did on January 11, 2010. We did have calling hours the night before and over 100 family and friends showed up to support us.

As horrible as that time was the following months were more insidious. We found it difficult to be around family, friends, other babies, but most of all just to BE. Looking back on that time even my daughters grieved heavily, just in their own way.

I added a new tattoo, a bright sun with Peyton’s name underneath.

I found that I had lost confidence in myself. It was all I could do to get my daughters to and from school and myself to and from class. That summer I began to talk to a therapist. We have tried many things to ease the pain. We decorate Peyton’s stone, we have released balloons, donated books on grieving to the hospital, my wife is trying to get a prenatal hospice program in place, and we have released lanterns. I realized, thru therapy, that I need to tell people what I need; friends and family are not mind readers.

Fast forward to 2012, my family seems to be adjusting to our new normal. We have even been graced by our rainbow baby, Hayden Elizabeth, our fourth daughter born in October 2012. My wife seems to be doing better at home and work. Even though my daughters still talk about Peyton, they couldn’t be happier with their baby sister Hayden. And I have one year to go before I graduate college with my accounting degree.

In conclusion, one would think that our faith would have faltered. But in fact my faith is stronger
than ever. 

Wednesday, June 12, 2013

Father's Day Personalized Photos Giveaway!

**This giveaway is now CLOSED. Everyone who entered prior to the closing will be receiving their photo! If that's you, please send a private message to Catherine at The Sacred Seashore by Thursday, June 13th, 2013. **


Catherine, a mama who lovingly carried her son Gabriel with a fatal condition, from The Sacred Seashore, has very generously offered to create photos for the lucky winners of this giveaway!

*Just in time for Father's Day*

The winners will receive their choice of photo, customized with their baby(ies)'s name(s).

See the photo options HERE.

To enter:
1. Like our Facebook page: All That Love Can Do
2. Like The Sacred Seashore: The Sacred Seashore
3. Comment below with the name of the photo you'd like, and your baby(ies)'s name(s).

**The photo MUST be made for a baby who has died, or is expected to die shortly after birth**

10 winners will be chosen and all winners MUST place their order by the end of the day on  Thursday, June 13th, to receive their photo.

Good luck!

Tuesday, June 4, 2013

Rocco's Story, by his mama

Post by Kynde

I am currently 29 weeks into my pregnancy.

At my 19 week level 2 ultrasound/anatomy scan (level 2 bc I have thyroid problems and they wanted to check the babies thyroid). It was my husband, my 15 year old daughter and myself anxiously waiting to find out...boy or girl.

The appt. took approximately 40-45 minutes and the technician was talking to us throughout as if everything were normal.

We found out we were having a little boy, Daddy was extremely happy...Rocco Javiar is his name. The technician left and informed us the doctor would be in to go over the results (which is common practice with level 2 ultrasound's) she said it wont be long. During this wait we posted the pic's we were
just given and announced we were having a little boy.

Darling baby Rocco <3

The doctor came in about 45 minutes later...that long wait didn't mean anything to us as we were not anticipating anything other then he is developing 100% normal and we would leave and go about our day. After-all how could the technician be so held together and engage us in happy conversation throughout the ultrasound?  The doctor came in and didn't waste anytime in pointing out what was wrong, his bones weren't measuring up, his spine was slanted at the bottom, he was a dwarf all signs of a condition called Thanatophoric Dysplasia which is a severe lethal form of skeletal dysplasia. His lungs and ribs will not form correctly and this will be what will take his life. I was crying and couldn't hear anymore, I finally asked what does this mean for him? She told us his condition was not compatible with life outside the womb and the genetic counselor would be in to talk to us about our options.

Options? What do you mean options? Abort (all the while he is fluttering around inside me, the thought of this...NO WAY) , induce and have him in the coming weeks or carry to term.

Through many many tears and why us? We decided he would be carried to term and we would spend the rest of the time we have with him talking to him about his family, his pets, his sister Aliyah who couldn't wait for him. How much we love him and how much he is loved. Squeeze a lifetime of memories and love into the short time he is with us happy and warm, safe from the world that will inevitably take him away.

He has already so strongly imprinted his soul onto mine and with every kick and flutter I am reminded why I choose for him to be safe in my physical body until nature takes it course.

Monday, June 3, 2013

Allison's Story, by her mama

Post by Janet

In September of last year at 22 weeks pregnant we found out that our second daughter, Allison, had Full Trisomy 13. The doctors told us she was incompatible with life. Despite being urged to terminate, we chose to carry our little girl and give her a chance at life.

We carried her to 36 weeks when her heart began to fail and her movements ceased, at that time, we decided we wanted to meet her alive and induced labor at 36w6d.

She was born on 12/21/2012 and lived 24 hours and 15 minutes.
Beautiful baby Allison <3

I cannot say enough about my experience carrying her, even knowing her life may be short.

The time I spent with her during my pregnancy, and in that 1 day she was here made all of the worry and hurt worth it.

We have a page for our sweet Allison that tells her story chapter by chapter. My page is also intended to advocate women who decide to carry to term despite a fatal diagnosis and to support other angel moms who are on this journey with me.

Read her story in detail HERE.
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