Saturday, November 30, 2013

It's Starting Tomorrow! {and, Carrying To Term during the Holidays}

The first official All That Love Can Do 12 Days of Christmas begins tomorrow!
My hope is that you’ll find comfort in knowing you are not alone, support from other families who are also walking this path, and healing by learning ways to include your beautiful baby in your holiday.

Please remember above all else to be extra gentle with yourself as you face the holidays without your baby. Only do what feels right to you and nothing more. It’s your baby who died, your grief, and only you can decide how to heal. It’s perfectly acceptable to “skip” the holidays and simply survive. You know in your heart what you need to do.

If you would like to connect with other babyloss families, please join our private group.

Each day, we’ll be sharing the story of one family and how they have coped with holidays since the loss of their baby. We will also have ideas for ways you can honor your baby this Christmas, special giveaways, and ideas for how to survive.

Together, we will remember our beautiful babies and find hope and healing during this very hard time of year.

See you tomorrow!
 ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ 

 **The following section is specifically for families who are currently carrying a baby 
who has been diagnosed with a fatal condition** 

Since All That Love Can Do was created to help families who continue pregnancy after a fatal diagnosis,  it's important to me to share some ideas for making the most of your time during the holidays.
It was two years ago that I was carrying our son, Samuel, who had been very recently diagnosed with a randomly-occurring and fatal condition called PUV. I was trying to keep it together as all my hopes and dreams for our son were slipping through my fingers. I gathered up all of my courage and did my best to make the most of his only Christmas with us. It was a very challenging time for us. We took it one day at a time and that’s what I always recommend for anyone facing the loss of their baby. (Sometimes, it’s just one moment at a time!) You can read our story here.

Please know how deeply sorry I am that you have to face the loss of your loved and wanted baby. I know how hard it is. I know how emotional it is. I know how much it hurts. But I also know you can do this. You have this time to make the most of, and every day your baby is alive is another chance to fill them up with your love. Remind yourself this is the one chance you have to make it special. Give yourself breaks to cry and release your feelings, then try again when you’re ready. Protect your heart by surrounding yourself with only those people who are supportive and encouraging. Do what you feel you’d like to do and nothing more.

Depending on how far along you are, and your baby’s condition, baby may be able to hear, taste, and see, despite being tucked inside. You can still do some of the things you wanted to do in the future with baby, just in a different way than you had planned.

Here are some ways to make your baby’s Christmas a special one:

Read a special Christmas story to baby
Watch a holiday movie as a family (baby can listen along)
Make Christmas cookies and enjoy a few with baby
Listen to Christmas music
Go to a Christmas concert
Donate toys in your baby’s name
Visit family and friends and let them talk to baby
Decorate the tree together and tell baby all about it
Drive around to look at Christmas lights and tell baby all about it
Buy yourself some warm holiday slippers (when mama’s comfy, mama’s relaxed and so is baby)
Light some holiday scented candles
Buy baby a special stocking and/or ornament
Have a 3D ultrasound done and use the images as your holiday card
Begin a journal of your time together and write a letter to your baby

These are just some of the ways you can make the most of your time at Christmas. Do what feels right to you and know that you are a brave and beautiful mama, and you are doing an amazing thing.

If you would like to get support from other mother’s who have carried their babies with a fatal condition, you can join our private online support group*. There is no need to face this alone.

My greatest hope is that you will be able to make some very special memories with your baby to last you a lifetime.

with Samuel in my heart, 

*Every person who asks to join the group will be sent an email. Please note: it may go to your “other” inbox. You will only be added to the group once you respond to the email. For the protection of the privacy of the group members, only mothers who continue pregnancy after a fatal diagnosis will be approved to join.

Friday, November 8, 2013

Twelve Days of Christmas

Holidays are so hard when your baby has died. (Excruciating even). While the world is happy and joyful and full of wonderment, your heart is broken and your joy is gone.

What should have been a time for family, love, and excitement has become something to avoid, something to forget, something you wish you could skip.

Especially in the first few years, the holiday season can feel massively overwhelming. It may have been your favorite time of year before, but now you wish you could just crawl into a dark cave for the next few months.

You are not alone <3.

This year, All That Love Can Do is hosting the 12 Days of Christmas to provide comfort and healing to babyloss families with broken hearts and empty arms.

Each day, beginning December 1st and ending December 12th, you can come to our Facebook Page and this Blog to find:

1. Stories of surviving the holidays from mamas, daddies, and grandparents in the loss community.
2. Suggestions on how to manage the stress, anxiety, and heartache of facing the holidays without your baby.
3. Ideas for how to incorporate your baby into your celebrations, including holiday craft tutorials.
4. Giveaways for your healing and comfort.

All babyloss families are welcome!

Will you join us?

Elliot's Story, by his mama

Post by Shawna

Elliot's life was full of shocks. 

At 12 weeks I had that unexpected ultrasound where the tech changed their expression, their posture, their voice, then they leave the room and you immediately know something is wrong. That knot in my stomach got tighter when the doctor came in. I'm not sure if I started crying before he even spoke. He told us that there was something wrong. Our babies abdominal wall had not fully closed and his intestines were growing on the outside. He briefly told us what it was. Gastroschisis. A word that became an everyday word of my vocabulary. When you hear that and have no medical background you think how does someone possibly survive through that! They told me a lot of babies survived but they also gave me the option of terminating the pregnancy. No way this was my baby! At first they didn't give us numbers. I was a numbers person before this. Before being on that percent no one thinks they will be on. I cried that whole week. Scared for my baby.

The next week we were sent into Boston and met with who was suppose to be Elliot's surgeon if everything went as planned. (There is no real planning with gastroschisis I have learned) Children's Hospital gave us a lot of hope. They said the survival rate for gastroschisis was around 90 percent. Ninety percent sounds great when you have never been in the 10 percent right?! They gave us all the info. (I wont go into all that detail.. check out for more info) They told us we would be seen frequently to check on his growth and to make sure his intestines were not dilated. We had a plan that I would start going to Brigham and Women to see a high risk OB at about 20 weeks and I would deliver there. Elliot would be transferred to Children's after he was born and stabilized and then the surgeon would determine when he would have his surgery and then his health care plan would go from there. They told us to expect anywhere from 4 weeks to any number of months but everything was looking great(for a gastroschisis baby).

At 18 weeks we found out that Elliot was a boy then he officially became Elliot! There was no change with his condition and he was still on track with growth. Once we began to go to Brighams was when the ups and downs began. Our first appointment went great and we also went back to Children's to do a follow up with his surgeon and also got a tour of what we thought was going to be home for awhile. 

Our doctor was amazing. Our plan was to go to 37 weeks then I would be induced for labor. I began us at appointments every other week but that quickly changed. I had a gestational diabetes scare but thank goodness the three hour test showed I did not have it. Each appointment Elliot's growth decreased but his intestines always looked good. It was awesome to see him change week by week and get to know his big personality so soon. My fluid started changing from low back to normal with each appointment. The pregnancy was stressful to say the least. I was in beast mom mode wanting everything to be perfect for my little boy and having no control on absolutely anything made me crazy! Hanging out with him in my belly made it all worth it. He was strong! My ribs felt it.

At thirty weeks a few days my doctor decided with my fluid levels being unsteady and his growth declining quickly that there might be something more be wrong and that maybe my placenta wasn't giving him enough nutrients. My next appointment he said that at the next appointment we would talk about giving him the shots to increase his lung maturity because he was thinking Elliot might soon be more safe out than in. He was showing 2lbs 1 oz on the ultrasound so was in the 2 percentile.

That was a Wednesday and my next appointment was a Monday(also was going to meet with Elliot's surgeon one last time before he was born) I did not make it to those appointments.. Thursday at about 3 am I woke up and was bleeding a little. We immediately drove into Boston where they ran tests and sent me home with no answers. Same thing happened on Friday. I was so anxious for Monday to meet with Elliot's real doctor. Sunday I woke up with cramps no bleeding. Elliot was suppose to have his third baby shower that day! I knew I didn't fell right so I figured better safe then sorry we better go in. I was shocked when they told me I was in labor. I knew it hurt but I didn't know that was labor. Shortly after we got there my water broke. I thought I had peed! I was one centimeter dilated so they brought me to labor and delivery. The immediate plan was to stop the labor for three days so Elliot could get the shots for his lungs. They gave me magnesium sulfate to try to stop the contractions. I have never felt so sick in my life! I felt like fire was rushing through my veins and was so nauseas. Between that, contractions and being scared for my baby I was not well. They brought me down for Ultrasound. I kept puking so I think that took awhile. After that they decided that Elliot's nst were not good and I needed to have emergency c section (mean while our families are at the baby shower thinking we will be home at some point that day). I'm not sure what I felt at that time because I was in such shock. Elliot made a little cry when he first came out but they immediately had to put a breathing tube in. I did not see him because they could one show us him for a second and I would puking into a bucket while my stomach was open on the table. I wish I knew more of the details of his first day but I did not see him. 

Elliot was born 31 weeks 5 days. He was 4 lbs 19.5 inches! Double the size we thought he was going to be. Elliot and his dad went to children's after he was stabilized. Elliot had his surgery that night and was recover well. I was so out of it at that point which I'm kind of glad because I would of been freaking about seeing him. But I knew he was safe and strong and I was proud! 

The next day I got to see him. Honestly I did not believe he was my baby at first. I couldn't imagine him fitting in my belly. He was so much bigger than I thought. It was scary seeing him with all the tubes and wires connected to him and he was swollen from the medication from the surgery. The next day he was much better and I got to hold him. That was so amazing. Then the next day both me and his day got to hold him and he was off oxygen. He was doing so great. We had some really great days with him. He was very alert and would focus right on us. He had huge hands and a strong grip. He was very curious. He loved his binky. He loved his head and belly being cradled. He always had his hands be his face. When he woke up he would only open one eye at first. He loved to be held. He was awesome. All the nurses talked about him. His family got to spend some good time with him too but they did not get to hold him. He had so much hair and I think the only trait he got from me was a bump on the top side of his head. 

It is hard to talk about his last two days so I am going so now share what I wrote an his one year anniversary of the most terrifying horrible day of our lives..sorry about the recaps and repeats of some of his story..
(I wrote this June 13th 2013)

"Elliot was a fighter. Very strong from the start. He was a superstar of the nicu. He was a pooper from the beginning (this is a big deal for gastro babies). He fought for his life like it was no big deal. He was a deep thinker you, could see it in his eyes. Everyday he looked so different and I fell in love with every face he made. He loved playing with his face and loved his binky. He yawned a lot when he was sleeping. He always grunted and made squeaking noises. He was an escape artist when he was all bundled up. When he had his "sunglasses" on for the lights he always managed to peek one eye at you. He loved to be held. He loved when we put our hands on his head and belly. He was so goofy and serious at the same time. He was so loved. He is so loved."

A year ago was the worst day of my life. I was sleeping in the children's hospital parent room when I get a call from Elliot's nurse to tell me Elliot is getting sicker and I should come see him. When I came to the nicu desk they had said they had moved him to a different spot. When I went to his bed he was getting an ultrasound on his belly. He looked tired. The doctors told me that his morning blood work was not good and that they thought it was an Infection but were not sure . they said they were going to put a breathing tube in so he could use all his energy to fight off what was wrong. There were a few nurses, two doctors ,ultrasound techs an administrative advisor. I helped the nurse put Elliot back into a little incubator while they were running tests and prepping for the breathing tube. They seemed concerned but I thought they were being cautious. I had to step back and let them work on him. The nurse said to me look he's looking right at you. I didn't know that was going to be the last time we would look at each other. I watched them put his little head back as they put the breathing tube. I kissed Elliot and told him the nurses were going to make him feel better. I was so scared for my little boy. I felt helpless. Elliot was sick the day before but they did not realize it because he kept his stats perfect. I was so tired that day watching my baby not feeling well. It was heartbreaking. 

After they put the breathing tube in It seemed to be going well so I asked if it would be ok to go pump and shower while they got him situated. They seemed fine with that. I felt so dirty from sitting in the nicu all day and sleeping in the dorm type rooms, I hadn't pumped in about 10 hours and I hadn't ate since the day before at lunch. As I walked out of the nicu I saw his surgeon walking in so in my head I thought oh good if there is something wrong with his belly he will be able to fix it. I went and did my thing as fast as I could. I wish I hadn't left for that hour. I walked in and I heard a nurse call "moms in the room" there was a lot more staff around him. They had a nurse there to explain to me what was going on. There was another nurse logging all the medication they were giving him from this cart they brought in. They were looking for a central line because they had to take out his other one. They were calling out so many things. One of the doctors was on the phone frantically. She had changed from the heels she was in earlier that morning to her doctor shoes. I stood back as the doctors and nurses said a bunch of things I didn't understand. The people working on him kept looking at his monitors. The respiratory therapists seems to be having complications. I was watching his heart monitor as it kept dropping. A nurse started calling out at 63 I believe. At 59 the alarms went off and they called out "start compressions". 

Almost everyone from the nicu immediately ran over. They asked me if I was sure I wanted to stay and they made me sit down. I couldn't handle it I ran out. I was pacing the hall when I saw two carts being rushed into the nicu. I knew it was for him. The nurse said she would come back with updates. I've never felt so scared and so far from home. Then they brought me in a room with a doctor a chaplain and social worker. They sat me down and the doctor told me they were opening him up in the nicu because they had no time to go to the OR, they told me they were making everything as sterile as possible and they needed to open him up to release pressure on his chest and to see if there was anything wrong with his intestine. She told me he probably wasn't going to make it. The doctor had to go back in and I sat waiting. At this point I don't even think I was crying because I was in such shock. This wasn't happening, my baby can't die I thought. People were in and out. Then the surgeon walked in and I knew. He said my baby had died. A team of doctors and nurses sat around me. I put my head on the table and started crying and weeping no no no. I could hear others cry as the put their hand on my shoulder. They all left the room and I can still distinctly hear the echo of my voice in my moms car speakers as I cried "mom my baby died" then hung up. 
As I waited for everyone to get there they asked me if I wanted to go see Elliot. I remember thinking that was morbid. I didn't want to see my baby not alive. When his dad came we went in to go see him. There he was as beautiful as ever. He was still my baby. He was still there and has never truly left. I wish I had held him longer that day when I was saying goodbye. I wish so many things were different. But as I continue to wish these things everyday or relive these moments over and over, I've learned you can't change it.

In the past year I have learned I am not alone. These memories have to flash through parents mind everyday for the rest of their life. This happens. And too often. There needs to be more done about it. Parents of loss are the voice of their children. Parents of loss join together and we often call it the club no one wants to join. We don't want you to join this club but we need more help beside the faces of loss to make this "club" stop growing.

I've had people say you post things so people feel bad for me. I Don't. I'm a very lucky mom to have the most amazing son. I've had people judge me. That's ok. If you think I'm posting this for attention I very much am. This taboo topic needs to be heard. Not just about Elliot but for every child gone to soon and their families. I want.. I need to make a difference in some sort of way. I want to help in any way that I can to have a parent not go through what I did that day. I want to be an advocate of awareness. I want to support the ones that unfortunately have to live with this ache. Elliot taught me so much and made me so strong. So I hope I'm heard. I hope I can bring knowledge to someone. If one thing i post helps one parent through this journey I've made a difference. If one fundraiser I do goes towards research then I've made a difference. If one person appreciates their child a little more because of Elliot's story then I've made a difference. When Elliot touches the lives of others I am the proudest mom in the world and I'm going to always help Elliot do that. 

Now that Ive gotten your attention there are some things you can do to help! First off hug your children a little tighter. You can also donate to Avery's Angels or March of Dimes. Donating blood or platelets can save so many babies lives. Or go online and pledge to see the movie Return To Zero. ( local leader Rebecca Hayes)

And if you want to make my heart smile just say Elliot's name to me.

Thank you everyone for the support over the past year. Some people have gone above and beyond. Some people have come out of no where. Some people stayed and stuck by my side. For all you amazing people thank you for helping me make the difference I want to and by doing so, helping me be able to mother Elliot.

My biggest thank you goes out to Elliot. He'll always be my baby but he's so much more. He's done so much. I wish I could better share life with everyone.

Thursday, November 7, 2013

Lia's Story, by her mama

Post by Mellisa Higgins.

In July of 2007 I was 5 months pregnant and excited to go to my ultrasound. This was an unexpected and not entirely wanted pregnancy but I knew that it happened for a reason. My twin sister, my mom and my dad met me at my appointment and we all went in together. The technician asked me if I wanted to know the sex of the baby and of course I said yes! When she told me it was a girl, everything suddenly felt so real and I knew that this little girl would be the love of my life. After a few more minutes, the technician abruptly left and said she would be right back. I knew something was wrong.

She came back with a male doctor and he looked at the ultrasounds without saying a single word. After what felt like forever but was probably about 2 minutes, he said "I have terrible news". My heart dropped. I was just accepting that I was going to be a mommy and I was excited about it for the first time. The doctor left and came back with a post it note with a word written down on it. He said that my baby had Hydranencephaly, a rare neurological disorder where most of the brain is absent and replaced with cerebrospinal fluid. He said that she would not survive past birth. Since I was already 5 months along and live in the state of New York, he said it was too late for an abortion but that I could go to a place in Kansas. I remember my mom later saying that all she could think of was The Wizard of Oz, that we weren't in Kansas anymore.

The doctor said that if I decided to carry the baby, there was a 50% chance that her head would grow so large that a c section would be necessary and that would only be after they stuck a needle in her head before I gave birth to drain the fluid. I was devastated. I asked why it happened and he said that it is one of those rare things that happened and no one knows why. My family and I were all in tears and I called into work for the next few days and spent some time at my mom's house. I researched Hydranencephaly every minute of every day. I read horror stories but I also read stories from real families about hope and life. I decided that there was no way that I could give up on my baby. She was moving around like crazy and if she was still alive, I wasn't going to do anything to take that life from her.

The rest of the pregnancy was filled with emotions ranging from fear to anger to joy every time I felt her hiccups. I cried a lot but I knew that in the end, I would hold my baby in my arms no matter what. I decided to name her Lia. There were no baby showers, no baby things bought. I went to 4 different doctors, one of which was in a center for pediatric neurology. They all told me the same thing, that Lia would not survive after birth because my body was what was keeping her alive. The neurology department wrote me a list of the ways that she was going to die. I still have that list.

On November 7th of 2007, I started having contractions in the early morning. I called my older sister and she started to make the 5 hour drive to be with me. My mom, dad, twin sister and brothers in law all came. I went to the hospital at 5th and was admitted. A previous ultrasound showed that her head had not grown any bigger than normal so I was OK to have a vaginal birth. In the delivery room, my family kept me laughing and smiling and never talked about Lia's fate. I started pushing at 5 am on November 8th. Lia's head was turned to the side and she was "sunny side up", so she didn't make it easy for me! Finally the doctors had to use suctioning to help her out and at 8:02 am on November 8th, 2007, Lia Astrid was born at 8 pounds 8.5 ounces.

20 seconds after she was born, she let out the loudest, most heart melting cry that any of us had ever heard. My entire family came in to see her, aunts and uncles, grandparents and sisters and parents. Everyone wanted to see her. Everyone was waiting for what the doctors had told me would happen. A priest came In before I could even hold her and baptized her. Finally, Lia was placed in my arms and I got to look at the most beautiful baby girl I have ever seen. The nurses and doctors let her stay right in the bed with me and only took her for her first shots and to clean her up.

Then something amazing happened. She didn't die. I felt like I was constantly holding my breath and waiting for something to happen but it didn't. I had her on a Thursday. On Saturday, they said we could go home. She wasn't eating nearly enough but the doctors thought I would like to spend her days with her at home. My family rushed out to buy clothes, a bassinet, and everything else you need for a baby that I didn't have. The hospital sent me home with diapers, wipes and formula that would last months. A hospice nurse met us at my house. The first night at home was scary but we made it through it. The next day, the home nurse asked if I had thought about a feeding tube. Back to the hospital we went to get Lia an NG tube.

Six weeks later, Lia was eating from a bottle on her own. She had lot's of medical issues and was in and out of the hospital several times. But she lived. She could eat, see, hear, all the things the doctors said she would never be able to do. Of course she was very medically fragile but she was the love of my life and her smile could break hearts.

Lia passed away 28 days before her second birthday. She had a massive seizure. I lost a part of my heart that day, but I am forever grateful that for almost 2 years, Lia was my everything. If I had gone to Kansas, I would have never learned what true love is and what it means to love someone so much that you would sacrifice everything for them.

Lia would have been 6 on Friday, November 8, 2013 . As I do every year, I will celebrate the life of someone who changed everyone's life who met her.

Monday, November 4, 2013

A Gift of Time Giveaway!

This giveaway is now CLOSED. picked Amanda Hoyt {for Michelle Roeske} as the winner! Amanda, please contact All That Love Can Do within 24 hours to claim your prize!

Crystal, for entering you're entitled to a 25% discount to order yourself a copy! Please contact us to receive your code. 


A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief,
is a gentle and practical guide for parents who decide to continue their pregnancy knowing that their baby's life will be brief. 

When prenatal testing reveals that an unborn child is expected to die before or shortly after birth, some parents will choose to proceed with the pregnancy and to welcome their child into the world. With compassion and support, this book walks them step-by-step through this challenging and emotional experience—from the infant's life-limiting prenatal diagnosis and the decision to have the baby to coping with the pregnancy and making plans for the baby’s birth and death. It also offers inspiration and reassurance through the memories of numerous parents who have loved a child who did not survive. Their moving experiences are stories of grief—and of hope. Their anguish over the prenatal diagnosis turns to joy and love during the birth of their child and to gratitude and peace when reflecting on their baby’s short life.

Full of practical suggestions for parents and for caregivers, this book also features the innovative concept of perinatal hospice and palliative care. Caring and thoughtful, it helps parents embrace the extraordinary time they will have with their child.

Please see Perinatal Hospice to learn more!

We are currently giving away one FREE copy of this book to a family who is currently carrying, or who has lost after carrying, their baby after receiving a fatal diagnosis.

To Enter:

1. You MUST be carrying your baby to term after a fatal diagnosis, have lost a baby after carrying to term, or entering for a family who is currently carrying (if you are entering for a family who is doing so, please note that in your comment).

2. Comment below with as much of your story as you'd like to share

4. To earn extra entries, simply share our post on your Facebook page and then comment below "Shared".

*As a special gift from the author, everyone who enters will be given a 25% discount to order the book for yourself if you do not win!

Good Luck!
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