Category Archives: Volunteer Bloggers

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Holidays

As the holidays come to a close I am looking back on this year with our daughter and I think how different our lives would be if we had more than just one child here on earth.

If all of our babies were here we would have a full house, in which we would be tripping over children everywhere. Our home would be filled with even more stuff then it already is. But it would be a good full house.

As we move into the new year we are filled with hope and love for our friends and family.

December has so many sad memories for me but it also is a month of joy and happiness.

I hope that everyone out there who is grieving over their babies that they have lost, their troubles getting pregnant or the happiness of having your baby here on earth had a great holidays and a happy new year.

 

 

Category : Amanda , Volunteer Bloggers


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Don’t Give Up

This year I’ve been somewhat quiet about what’s happening in my personal life. I posted at the beginning of the year about my frustration with trying to get pregnant again. Only a few weeks later, I discovered I was expecting again. Because it’s always been a struggle to get pregnant, this was a huge surprise.

The last week in November we welcomed our little girl. It was a rough pregnancy with many complications, and we were in the NICU for a week after the birth. Despite all the anxiety and fear that something would go wrong, we made it and we have our pot of gold (a baby born after a rainbow baby).

As you go into the new year, wherever you are in your journey, I hope you’ll be able to look forward with hope. This time last year I was so overwhelmed with the thought of starting our journey to have another child. I always seem to be that statistic, that 1% that struggles. You never know when you’ll be in that 99% normal. Even those of us who have known loss can have our expectations realized.

Category : Stacey , Volunteer Bloggers


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Believe

October 24th I gave birth to a beautiful baby girl, Lucy Rose. The whole day was a dream come true. Everything went according to plan. The moment I had prayed for had finally come. Things were falling into place just as I had hoped.

By Friday morning, our dream became a nightmare. Lucy was taken to the NICU around 2am Friday. She was exhibiting “involuntary movements.” An assortment of tests were already in the works by the time we were told what was going on.

I had sent Lucy back to the nursery around midnight so my husband and I could get some much needed rest. One of the nurses in the nursery spotted her subtle tremors. The doctor had ruled out various infections and said it was most likely something with her brain.

How could this be? Everything went perfectly. The pregnancy was perfect, the delivery, perfect. Why was this happening? Hadn’t my husband and I been tested enough? Why should this perfect little human have to go through such dread right from the start? 

The morning dragged on. We weren’t allowed to see Lucy. We sat in our room with our family members. We hugged, we cried, we prayed. That is all we could do. Flashbacks of my miscarriages surged through my mind. The all too familiar feelings of guilt that I did something wrong came surging back. I felt so helpless. Our baby girl was struggling and we could do nothing but hope and pray. Word spread fast of Lucy’s struggle and family and friends from all over were praying for her. She was just two days old and she was making a huge impact within our little world.

By early afternoon, we were allowed to see her. Seeing our baby girl hooked up to machines was the hardest thing we ever experienced. She didn’t look like she did just the day before. She was puffy from IV fluids and groggy from the anti-seizure medicine. As we sat there, we saw the subtle tremors. In retrospect, we had realized she was exhibiting the seizures the day before. Newborns are so jittery in their movements we figured it was just newborn stuff. What did we know? Thank God I sent her to the nursery. Thank God for the nurses who caught it. 

Lucy had an ultrasound of her brain, an MRI, and she was hooked up to an EEG machine. The ultrasound showed no bleeding in the brain. The MRI, however, showed three infarcts in the frontal lobe. Lucy had experienced oxygen deprivation to her brain and the seizures were the aftermath. They weren’t completely sure what it was and knew she needed extensive monitoring on an EEG machine.

An adult neurologist reviewed her MRI, but the NICU at Lankenau hospital told us what Lucy needed was a pediatric neurologist. They suggested she be sent to Children’s Hospital of Philadelphia to be monitored more closely. My baby’s first car ride was in an ambulance.

She was born 6:41pm Wednesday and by 7pm Friday night she was at the NICU at CHOP. Everything was moving so fast. I felt as if I was outside of myself looking down. We had no idea how long she would be at CHOP, but we figured it would at least be a week or two. When you hear your child is in the intensive care unit for a brain injury, you prepare your heart and mind for the worst case scenario.

Lucy was in CHOP NICU from Friday night until Monday night. When she arrived Friday night, the seizures already started to subside. She was on an EEG machine until Sunday afternoon with a video camera on her so the doctors had a visual account of her movements. She didn’t have any seizures. She kept getting better as the weekend progressed. She had a glowing report from the neurologists. Her diagnosis was hypoxic ischemic encephalopathy (HIE). It is caused by oxygen deprivation to the brain. At some unknown moment, her blood pressure dropped and oxygen did not reach her brain. Thankfully, the type of injury Lucy had was so mild that the doctors believe she won’t have any future effects. Children who experience Lucy’s level of brain injury turn out fine. If she does have any deficits, it may be a learning difference that can be addressed when she is older. The section of her brain that was damaged, the frontal lobe, will not affect any major functions. Her developing brain was able to recover for whatever was lost.

Moving forward, if she exhibits any seizure activity, at least we now know what to look for and how to address it. The doctors assured us that any further seizure activity is highly unlikely. All the nurses and doctors Lucy encountered were guardian angels. God bless the NICUs at Lankenau and CHOP.

At the time everything was occurring, I had no idea how I was functioning, how I was gathering strength to get through it. But I did it. My husband and I got through it. Lucy got through it. In retrospect, we got through it because we already knew how to lean on one another. We had already experienced painful moments together. We knew the power of thinking positively in a negative situation. We knew how to believe that we could survive anything together.

I now fully believe I experienced my miscarriages for a reason. My husband and I needed to learn the type of strength required for what happened with Lucy. The two pregnancies I lost strengthened our hearts and gave us perseverance. My losses gave me the ability to believe in the power of prayer, the power of faith, the power of love. They gave me the ability to believe in the power of my relationship with my husband. I needed all of these abilities to handle Lucy’s situation.

Lucy is doing well now. She is just over 6 weeks old. She hasn’t had any seizures and she is developing as she should. Every day she looks a little different and makes new strides. While I still worry, just like any new mom would, every day we have a stronger belief that whatever the next day brings, we can get through it as a family.

Lucy is such a blessing. She is a gift from a higher power. She is our rainbow baby. She is our Lucky Lucy.

Category : Kate , Volunteer Bloggers


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5 Things You Should Know About My Mom Life Post-Loss

Being just over 20 months into this whole parenting thing, I’m discovering that my journey looks somewhat different from some of my friends. For a mom who hasn’t had to endure loss, it’s sometimes hard to understand why I do some of the things I do. On the surface I’m a pretty normal mom, but there are a few ways my losses affect the way I am as a parent.

1. I still miss them on a daily basis, it’s just not all consuming.

For a while after my losses, my entire world was colored by it. My heart and body ached. It hurt to get up without them, and life felt so hopeless. Having a living child to care for has helped give me meaning and purpose, and life is so busy now I’ve been forced to let go of that all consuming pain. But, I still miss them each day in little ways.

2. One of the biggest hurts is knowing the world will never know them.

One of the things I enjoy most with my son is going out and introducing him to people. He’s so outgoing and has such a sweet disposition, it makes my mom heart swell with satisfaction when people have a chance to appreciate him for being his wonderful self. On the flip side, it makes me mourn the fact that I have three children no one will ever meet. They never had a chance to leave their own legacy.

3. I still keep track of the milestones like their ages and where they’d be in life.

As time moves on, milestones become fewer and far between. I still track them. I use their due dates as birthdates (all my babies were lost in the first trimester, and it feels so sad to celebrate those dates) and keep tabs on their ages. My oldest would have started school this year, and would have celebrated his sixth birthday a couple months ago. My other two would be turning five and four in November.

4. My family will always feel a little incomplete.

Parenting has made me feel so complete as a person, while highlighting how incomplete my family is. All those empty years of loss, when it should have been so full of love! I’ve spent the better part of a decade either being pregnant or recovering from pregnancy, and sometimes my family looks a bit too small to me.

5. I hate having to answer how many kids I have.

I never know what to say. It’s complicated to most the world. Some people don’t count my children as real because they didn’t make it out of the first trimester. Some people get really uncomfortable finding out I had babies that died. To me it’s so simple, I loved my three children as soon as I learned they existed and they count. Sometimes people struggle to understand that.

Wherever you are in your journey, loss is hard. I consider myself so fortunate to hold my rainbow and discover life with him. It doesn’t take away the pain of the babies I’ve lost, and sometimes having a living child only highlights more the tragedy that child loss is.

Category : Stacey , Volunteer Bloggers


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5 Key Lessons I’ve Learned

I’ve learned a lot since experiencing my miscarriages. Some lessons I’ve learned I still don’t think I can put into words. For pregnancy and infant loss awareness month, I reflected a while on listing at least 5 of the most important lessons I have taken away.

1.) Lean on those who love you. It’s hard to allow yourself to be vulnerable. As women, I feel as though a lot of the time we are expected to deal with pain silently. People expect us to pick ourselves up and move on without question. Doing this not only makes loss more painful, but it is also damaging to relationships to handle grief this way. Lean on your partner, your friends, your parents. Whoever it is you can trust, allow them to comfort you and help pick you up when you need it.

2.) Express yourself and your feelings. Don’t bottle up your pain. It is real. Let yourself feel it and talk about it to those you can trust. Do not file it away because it isn’t a topic commonly discussed. If you reach out, you will find others who can relate.

3.) Take time to care for yourself. Take some personal days. Sleep in. Stay in your pajamas all day. When I had my first miscarriage, I must have eaten over 20 tasty cake cream filled cupcakes through the week. It sounds ridiculous, but it’s my favorite junk food and in some way, it made me feel better. Indulge and comfort yourself in a way you see fit. Watch trashy TV and cry. Let yourself release all the tears you hold for your loss. 

4.) Don’t let anyone dictate how you grieve. You will carry this loss with you for the rest of your life. That’s just how it is. It gets easier with time, but you will always hold it in your heart. It’s how you handle it moving forward that can make a difference. Grieve in your own way. Honor your loss each year. Don’t listen when people tell you to get over it or move on already. Because, sadly, there will be people who say that to you. Sometimes people just don’t know what to say. And we have to take what they say and try to understand where they are coming from. 

5.) Keep the faith. It’s hard to keep faith that some higher power or someone knows why the heck this stuff has to happen to us, but it is important to focus on a belief that there’s a reason for these events. I still struggle with this and can’t fully understand why my body decided to trick me. But searching for the light gets you through your dark days. And you will have dark days. No matter how optimistic of a person you may be. Loss will bring you down in ways that you may have never been down before. But, you have to believe there is that light at the end of the tunnel. There is always hope, always a sunnier day ahead.

Category : Kate , Volunteer Bloggers


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I will never forget…

As this month is pregnancy loss awareness month I have been thinking a lot about our losses and how others sometimes seem to have forgotten that we have been through so much in order to have our daughter. 

I will never forget that my first positive pregnancy test ended in a loss only a few weeks later. 

I will never forget the moment when the ultrasound tech turned the screen away from us and told us she needed to get the doctor, after we had already seen our little one’s heartbeat twice.

I will never forget the moment that I started having cramps then bleeding while I was volunteering for a local charity.

I will never forget the moment when the ultrasound tech told us everything looked great and we were 6 weeks along, after being told we were 6 weeks along 3 weeks prior. 

I will never forget when I sat at Thanksgiving dinner knowing that our pregnancy was probably over but we had to wait until after the long weekend to have a second ultrasound to confirm our baby was not going to make it. 

I will never forget when I woke up in the middle the night with cramps and a few days later I was bleeding and knew it was the end of our 5th pregnancy. 

I remember all of those days like it was just yesterday. 

But as much as I remember all those bad days I also remember all the good ones that followed with my 6th pregnancy. 

I remember the day we saw her heart beat for the first time, the day we were told that all her genetic testing was normal, the day that I felt her kicks for the first time, the day that I could see her move for the first time, and the day that we first got to hold her and all of the days in between. 

We will never forget all that we have been through in order to have our daughter, we will never forget all of our other babies. 

Category : Amanda , Volunteer Bloggers


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Please Don’t Say…

Please don’t say it happened for a reason….

For there is no reason for an innocent child to be taken away. While good can come of bad situations, good does not rely on pain.

Please don’t say I can have another…

Because not one, ten or a million will be the baby I lost. Each life is irreplaceable, so don’t try to replace mine.

Please don’t act like this pregnancy was a mistake…

You don’t know how long we waited to see those two pink lines. You don’t know how long we’ll wait, or if we’ll ever see those lines again. We prayed, we planned, we begged God for a miracle. No matter how short, that life was ours.

Please don’t say it, if you start with “at least”…

A loss is a loss, there is no “at least” or bright side. At least I wasn’t further along? At least I got to hold her? What you truly mean is, at least it wasn’t you.

Please don’t ask why I’m still crying…

A loss happens in a single moment, but grief takes a lifetime. A child made a hole they were meant to fill. And now that hole has left an empty space, not a lifetime of tears can fill.

Please don’t tell me how strong I am…

I did not plan or train for this strength. This strength is not something I’m proud of. It was forced on me or I would have drowned.

Please don’t tell me about when I’ll be a mother…

I was a mother already the moment I conceived. I was for every second of their tiny heartbeat. And I’ll be forevermore. I’m still a mother, though my child is gone. They’ll still be my baby, though worlds keep us apart.

But please, oh please, don’t say nothing at all…

I don’t need your advice, I don’t need help finding my way out. I just need arms to hold me, a shoulder to cry on, and to hear the sweet name of my angel. Don’t be afraid that you’ll remind me of my loss. I think of her every second of every day. What I truly fear, most of all, is that her name is never spoken again.

The most comforting of words, when a heart is breaking, are the words not said by the tongue, but spoken through the heart. A tear shed, a hand held, a look that passes a sonnet. These are the words I want to hear when I want to hear nothing at all.

Category : Sarah , Volunteer Bloggers


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If you've come to this blog, it likely means you have suffered a pregnancy loss of some type. We are so sorry you have found yourself here, but hope the stories of life after loss can help you on your road to healing and recovery. Remember, we are all in this together!

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