What I Learned on the Day I Almost Lost My Daughter and My Life

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I wish I could remember, but I can’t.

The day my daughter was born was one of the worst and best days in my life — a day that almost ended my life — and I can’t remember much of it at all.

After spending six weeks in and out (mostly in) of the hospital — I went into labor sometime after 1:00 a.m. on May 12, 2012.

I was in the hospital because of a severe case of placental accreta, which later turned into placenta percreta.

My daughter’s placenta implanted smack dab on my scar tissue from my previous C-sections and began to burrow through my uterus. She always has gone her own way!

This was detected early on in the pregnancy because I continued to experience light bleeding from about 4 weeks on. The problem was that since she was barely visible through ultrasound eyes, all we knew was that she implanted very low in my uterus and we would have to keep a close eye on where she went as she grew.

At 17 weeks gestation I had a massive hemorrhage on a school field trip with my high school freshman. I was admitted to the local hospital where I required several units of blood to stay alive and pregnant. This ultrasound confirmed the suspicions of my obstetricians and they diagnosed me with 100 percent placenta previa

Some women are diagnosed with partial placenta previa, which can be dangerous, but can also resolve as the placenta and baby grow. I was told that mine would not resolve as it was a severe case.

I was told not to return to work and to stay off my feet. This was particularly difficult. At that time I had an almost 7-year-old, a 5-year-old and a 3-year-old boy at home to mother.

How could I mother from my bed? That’s for another blog post.

It turns out that not quite two weeks later, I had another massive hemorrhage as I walked from my bedroom to the bathroom (10 steps away) and I almost lost my life.

After a stay in the hospital and several units of blood transfused into my body — I was still pregnant and I was sent home with strict instructions not to leave my bed unless I had to use the bathroom.

That didn’t work for too long. About two weeks later — it happened again.

This hemorrhage was worse than the previous two. I was already very anemic and I immediately passed out on the floor. Luckily, I was able to call for help before I passed out. Once I arrived at the larger county hospital (with a trauma center) I was admitted and received countless bags of blood to replenish what my body was releasing.

No one was sure it would work, and most doctors were convinced I would go into labor and deliver my daughter at 21 weeks’ gestation.

I was not convinced.

That night, the ultrasound showed that my daughter (we found out she was a girl!) seemed unaffected by my health issues and was just hanging around in the womb. She was fine. In fact, the doctors told us the stress put on her during my bleeding episodes actually helps her lungs to develop because of the natural steroids released into both of our blood streams. Who would have thought?

Fast-forward two more weeks of living in my bed at a large county hospital to May 12, 2012 — the best and worst day of my life that I can barely remember.

Around midnight, I started to bleed heavily again (I had never stopped). I was being monitored and around 3:00 a.m. everything got worse.

This hemorrhage continued to get to the point of no return and to top it off, I went into labor. After a few attempts to prevent delivery, I was ordered to have an emergency C-section to deliver my baby.

She was at just 23 weeks’ gestation.

I barely remember this day. I was in such a state of denial and fear that I blocked out the hours leading up to her birth.

I was told there was a high possibility I would not survive and I used the hospital bedside phone to call my own cell phone, so that I could leave my boys a goodbye message.

This was the worst day of my life — until it wasn’t!

I was forced to have a vertical C-section (after having three horizontal ones in the past) due to immediate need to deliver. I lost my uterus in a hysterectomy because the placenta had actually grown through the walls of my uterus and attached to both my bowels and bladder, and all three needed to be surgically separated. I was diagnosed with what is classified as a severe case of placenta percreta. I also needed over 30 units of blood in transfusions.

I was asleep for all of this.

I was asleep for the rest of that day and the next in the surgical intensive care unit (SICU) because of my surgery and related complications, and I don’t even remember my daughter being born. I never got to meet her that day (or the next).

I can say that May 12, 2012 was the best and worst day of my life because now that I can reflect upon it — I notice several changes in me — as a person and mother.

Once I knew I would live and that my daughter would live (this took a few months to be sure of) — I realized that I should not take the gift of life for granted.

We only get one.

My daughter fought for life and I did, too — and we won.

She spent 121 days in the neonatal intensive care unit (NICU) and had over 30 blood transfusions, X-rays, surgical procedures and more — and now she is almost 4 years old and perfect. She is lucky and was left with very few side-effects from her extremely premature birth and four-month fight for life.

So you see, it doesn’t matter that I can’t remember the best and worst day of my life. Neither of us may remember the best and worst day of our lives, but we will know that we shared it. We have the rest of our lives to make sure we make memories that last longer than us.

Does it matter if I can’t remember the hours before my daughter’s birth and if I didn’t get to see her first breaths — if I get to see all the rest?

Look forward and not backward…

And by the way, I got to meet my daughter for the first time just before midnight on Mother’s Day that year. What a gift!

Happy Mother’s Day to all the mothers out there!

We all make sacrifices for our children with the hopes that those sacrifices help them lead healthier and happier lives.

We don’t know how many breaths we have left, so let’s make them full of memories.

mother holding her young daughter

Follow this journey on Micropreemie.net.

The Mighty is asking the following: Are you a mother with a disability or disease? What would you tell a new mother in your position? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Reminder I Need When I Feel Guilt as a Preemie Mom

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To start, I’ll simply say: Mom guilt, you suck.

“Mom guilt” is something I think every parent can relate to. Whether you’re feeling guilty about something you did this morning, or something that happened 10 years ago. It’s a very real weight that can break you down without any warning, because of the smallest ounce of disappointment in something that you did, or didn’t do, that you believe had an end result that wasn’t the best. As parents, we work our absolute hardest to make sure that our children do not endure any pain because of something we, as parents, did. I think women especially can struggle with the guilt; and this is where it gets a little tricky for me.

As women, we have the ability to grow tiny humans inside of us, and that is an amazing thing. From the moment we find out that we’re pregnant, we are determined to keep that child safe until the day we die; but at some point we won’t be able to follow through with that unspoken promise. Unfortunately, my moment of failure came more quickly than others.

Starting back at the day my water broke, I was angry with myself, with my body, for not doing what I was supposed to do, for not keeping them safe. When the girls were born, we knew they would have an intense life ahead of them; fighting for every ounce of life they would live — and for this, I blame myself. As sad as it may sound, I feel my body failed them. My body was supposed to give them a place to grow until they were ready to come into this world. But unfortunately, my body had other plans. Due to this letdown, they have endured more than many can even imagine.

From day one, with every poke, every tube that came out and then went back in, I felt it was my fault. Every time they cringed because they were in pain, my fault. As time has gone on, the guilt has only gotten worse. I sit in the waiting room for surgeries, angry with myself for allowing them to be in this place. With every bronch that Charlee has had, I feel guilty, because if my body wouldn’t have failed her, she wouldn’t have needed the trach to begin with. Every stomach surgery that Lennix has had, the amount of pain she has endured, all because she wasn’t ready to be born. All of the EEG’s, the cerebral palsy, the times that they both have almost died, my fault.

What I will never understand is, I did everything right. I ate what I was supposed to eat, stayed away from what I should’ve stayed away from; I was healthy, I was active, but none of that mattered. I cry a lot, wishing my body would’ve protected them like it was supposed to. I cry after almost every appointment, saddened by the fact that they endure so much daily. I cry at least once a day watching them struggle with things other children are doing. I try my hardest to focus on the positives, the amazing things we have been blessed to witness them do, the miracles that they are, and the amazing people who are now family because of this journey. However, none of that diminishes the guilt during the hard times.

I am so thankful for where they are now and all they have overcome. I look at them every day amazed at the amount of strength they have. I wouldn’t be who I am today without them because they have taught me so much about life; they’re my heroes. I am so grateful for every single second of every day I get to spend with them.

And at end of the day, the guilt is worth it; without the guilt, I wouldn’t have two (almost) 3-year-olds. I will probably have “mom guilt” for the rest of my life, but that’s OK. I’ll take the “mom guilt” as long I get to have them by my side. I’m working extremely hard on convincing myself that it’s not my fault, and that without my body and my strength, they wouldn’t be here at all. I will get there eventually; eventually the guilt will subside. But every day, more so than the guilt, I am overcome with joyful emotion. Getting to watch them overcome all of the “impossibles” that were placed in front of them. I will forever remind myself that I’m the lucky one, because they call me Mom.

mother posing with her two twin daughters
Alexis and her twin daughters.

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When You're a Mom With Empty Arms on Mother's Day

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The store aisles are filled with cards, florists are creating beautiful bouquets. Mother’s Day is soon arriving. It’s a day to celebrate and pamper the amazing women in your life. But, for those spending a Mother’s Day with empty arms, it’s a day many might like to forget.

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Stacey’s “blessing bracelets.”

In 2013, I was pregnant with triplets, spending my first Mother’s Day growing three healthy babies. My life was filled with hope and joy. I was meant to be a mother and I had the pregnancy glow to show it. For Mother’s Day, my parents sent me three “blessing bracelets,” one in honor of each child. I remember wearing these with pride, amazed that I would finally become a mother later that year. But later turned into sooner, as I gave birth more than 17 weeks premature. Less than two months after Mother’s Day, I became a mother to my surviving triplet, and eventually, a grieving mother to two angels.

I never put much thought into Mother’s Day after my children were born. I knew the first Christmas and birthday would be difficult, but I honestly thought of Mother’s Day as more of a “Hallmark holiday.” But as the day arrived, I found myself hiding in the bedroom. The weight of grief consuming my body, tears taking over as I laid in bed crying. Yes, I have one beautiful miracle child, but that doesn’t take away the fact that I lost her two siblings.

Mother’s Day is supposed to be a happy occasion. But when your arms are empty, whether it be from child loss, miscarriage or infertility, it can be tough. Instead of celebrating being a mother, you may wonder, why me? And as you watch Facebook explode with pictures of happy families, you think about what could have been. For me, I look at my daughter and wonder what she would be doing with her brother and sister by her side. Would her handprint card be a trio of hands? Or would each of my children make their own special Mother’s Day card for me? And for years before I became pregnant, I longed to be that happy family on Facebook celebrating the holiday. Instead, I was facing yet another Mother’s Day with empty arms due to infertility, wondering if I would ever get that happy ending.

As we get ready to shower our mothers with gifts and praise, let’s not forget those moms who may be struggling. For those who have experienced a loss through miscarriage, stillbirth or child loss, even though your child cannot be held in your arms, they hold a special place in your heart. You are a mother and always will be. And for those struggling with infertility, it’s completely normal to be sad. While this Mother’s Day may be heartbreaking, next year could be full of hope and happiness.

For me, I know Mother’s Day will always be bittersweet, but I’ve come to accept that this is my new normal. My heart swells with pride as I hear my miracle child call me “mom.” Just recently, she opened my nightstand drawer, finding the three beautiful bracelets given to me three years ago. I teared up as I saw them, since they sat in that drawer due to tarnish. As my daughter pulled them out, she asked, “What is this?” I smiled as I explained the meaning behind each blessing bracelet. Peyton looked at each bracelet, inspecting them carefully, and then she repeated me, “One for Peyton, one for Parker and one for Abby.” I am a mother to triplets. Each of my children are blessings, I just have two blessings looking over my family from above.

a mother holding two preemies in her arms
Stacey and two of her children.

A version of this post originally appeared on Perfectly Peyton.

The Mighty is asking the following: Are you a mother with a disability or disease? What would you tell a new mother in your position? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Challenge of Naming My Premature Babies

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As I laid in the ICU recovering from my near death experience, a nurse walked in from the neonatal intensive care unit (NICU). She smiled as she asked, “Are you going to name your children?” My babies were now two days old, and up until then, my triplets had been known as “Baby A,” “Baby B” and “Baby C.” Born more than 17 weeks premature, my husband and I didn’t have names picked out. How were we going to name our “Baby A,” who had already passed away? It’s a challenge we never expected to be facing.

two newborn preemies in incubators
Two of Stacey’s triplets in the NICU.

It’s not uncommon for parents to wait until they see their babies to choose the perfect name. It makes sense — this is their identity, what they will be known as for their entire lives. But that wasn’t our case. My husband and I had barely talked names, other than joking about the fact that we needed six names, three first and three middle. The truth is, we were scared. After almost losing our triplets at 18 weeks gestation, we began to hold our breath. Instead of painting the nursery and picking out linens, we were counting down the weeks until our children would be considered viable by hospital standards. That didn’t happen as our children were born at 22 weeks, six days. But our doctors gave the triplets a chance, and each one was born alive. Unfortunately, within two hours of her arrival, our first born, Abigail, passed away in our arms. Faced with grief and shock, we were numb. Naming our children was the last thing on our minds.

As we learned on day three, the NICU nurses took a liking to our 1-pound children, giving them nicknames all with the letter “H.” That’s when it clicked: We couldn’t put it off any longer. I had only met our children briefly on day three when I was wheeled up to the NICU for the first time. Deep down I knew, it was time to name our children. As I sat in my ICU bed with a dozen wires and IVs dangling from my frail body, my husband and I began to brainstorm. I turned on my phone where I kept a list of names that I jotted down over the years. Peyton and Parker were always my favorites, and luckily, my husband agreed. That was the easy part; Peyton and Parker were alive.

Several floors below, in the hospital morgue, was our peaceful angel, only known as “Baby A.” It’s hard to admit, but I was hesitant about picking her name. What if none of our children survived? How was I supposed to name a child who I only looked at for a few hours? It’s hard to look back at nearly three years later, but at the time, I didn’t realize the importance of a name. We always thought Abigail had a beautiful ring to it. We went with our gut, and I am so thankful we did.

Here’s what I didn’t realize three years ago: It’s not the name that’s important, it’s the person behind it. Your name is your identity, but it’s how you live your life that becomes your legacy. When we named our children, there was no rhyme or reason. We didn’t name them after family members or for symbolic reasons, they were simply names we fell in love with. After Abby died, followed by Parker two months later, I wasn’t sure when I would hear their names. Some people get uncomfortable talking about death, especially the death of a child. I didn’t expect to hear their names, except from friends and family.

Looking back, I never imagined what would transpire over the months and years. I hear all three of my children’s names every single day. Sometimes it’s me talking about them, other times it’s a friend or supporter sharing their name through an email or in conversation. But it’s the voice of my surviving triplet, Peyton, softly saying Abby’s and Parker’s names that touches me the most. All the fear that my angels would be forgotten is long gone. Abby and Parker are two babies who spent only a short time here on Earth, but their legacy will last a lifetime. And my precious daughter, Peyton, embodies all three of them: powerful young girl who has already made a big impact around the world.

three inked footprints of a set of triplets
The triplets’ names and footprints.

A version of this story originally appeared on Perfectly Peyton.

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The 6 Stages of Emotion I Experienced When My Child Was in the NICU

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Elisabeth Kubler-Ross says there are five stages of grief. When it comes to death, I can agree with those stages to the letter. With preemie and NICU life, though, I don’t think they quite fit. Some of the stages are the same, especially anger and depression, and acceptance is the goal, but the route one goes through on the journey, I’ve found, is so different.

Why? You are still dealing with a changing situation, and your child is solely dependent on the choices you make for them. It can be a rollercoaster from day to day. Sometimes those stages overlap, or are cyclic; uncertainty and hope are in a symbiotic relationship. It can be hard to explain it to someone who hasn’t been through it, especially to friends and family who are on the outside looking in. Maybe if there was a scale similar to Kubler-Ross’, it could make sense to those who want to help their loved ones who are in the middle of the battle. These are the six stages I propose.

Stage 1: Fear

Fear is an overwhelming and consuming emotion. It can set in as soon as the word NICU pops into the conversation with the doctors on the way to the delivery room as the early labor refuses to stop, or when a medical condition is discovered on a prenatal scan. Even the most informed parent may experience it to some degree; I felt it when my daughter was born early, even though I had been through it with my son once before. It was much less severe, since I knew the drill, but still, I didn’t know what might happen next.

Stage 2: Anger

Anger usually comes on the tail end of fear. Anger at the situation, often one you cannot control. All the training from 12-step programs about accepting the things you cannot change and having the courage to change the things you can is often difficult to remember when you see your child in an incubator, sometimes with tubes or IVs coming out of them. You may feel anger about not being able to do anything to help them.

Stage 3: Depression

Depression can be what anger turns into; Freud didn’t call anger turned inward depression for nothing. You may get so angry with yourself for not being able to help your baby, because you weren’t able to carry to term, or because you think you did something wrong in your pregnancy. No matter what anyone tells you, you may still feel the guilt. The depression often fades over time, but the guilt can linger and spring on you at the oddest of times. In my case, it comes back whenever my son gets a bad cold and takes weeks to shake it because his lungs didn’t get a chance to fully develop. PTSD and post-partum depression can be more common in NICU families, and therapy can help, but all the coping mechanisms in the world cannot erase the experience completely from your life. You just learn how to function with it and let it hurt a little less.

Stage 4: Monotony

This is when your life gets into a routine of going back and forth from the hospital, to the pumping room if you are pumping breast milk, to a waiting room when you cannot be in the NICU during procedures, to (if you are lucky) home, then back again. It’s an endless cycle of scrubbing, and washing pump parts, and hoping for kangaroo time if baby has a good day. It’s learning how to tell when alarms in the NICU are for your child or for another child, just by the sound. It’s learning which days to avoid the hospital cafeteria because it is a horrible food day, and how to navigate the hospital halls to avoid certain wards over others, etc. Then one day you hear those magic words: “We can start looking at discharging your baby soon, if they meet certain goals.” That is when stage 5 begins.

Stage 5: Uncertainty and Hope

I believe uncertainty and hope are like yin and yang. You get this excited feeling that the nightmare is over, that soon you will get to settle in at home with your little fighter, but at the same time, you may have that fear creeping in that you don’t think you can do this. You have been helped by all these nurses and doctors for so long that you wonder if you can handle this tiny human all on your own. The nurses are usually pretty awesome and can help you transition to doing all the diaper changes and feedings in step down units, show you how to do the baths, etc. They are great at training you if you have to go home with monitors, oxygen, or other medical equipment, and setting you up with home health nurses if needed.

The best advice ever given to me was to listen and learn from the nurses. They are the ones who have been with you from the beginning, so they can help you with your fears and talk you down when the fear and uncertainty come over you. They are just as excited for you to be going out those doors, but wouldn’t recommend it if they didn’t think you could handle it. Take strength from that.

Stage 6: Relief

The day has come: You can go home with your little miracle. Yay science! The flood of emotions you may feel can surprise you. You might get teary-eyed when you realize that the cycle of monotony is over; you won’t have to come back again and only sit next to your child. You get to go live a life away from the hospital with baby; and if you have other children, get to finally introduce their little sibling to them. The joy is amazing, and it can be a great stage to reach. Enjoy it; it is a well earned and deserved end to the roller coaster ride you thought would never end.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Looking Back On My Son's Premature Birth 6 Months Later

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My son Kaleb is now 6 months old. As many parents will say, I can’t believe it’s already been six months. Now that half a year has passed since that week at the end of August and Kaleb’s birth on September 1, I’ve found myself looking back at that time. It seems as if every detail and moment is etched forever in my memory.

I admit that tonight has been a bit rough. Kaleb has been a little fussier than usual, requiring a few more extra cuddles. It can be tough with a 3-year-old who also wants his Momma, and my husband still on the road from a golf tournament. I find myself noticing the difference 6 months can make.

Six months ago, Kaleb’s future was very uncertain. Since hearing that we would be having a very small preemie, we had no idea what to expect. I feared for my son; having to give birth to him at 28 weeks felt entirely too early. My heart was battling conflicting emotions. As they wheeled me into the operating room, I kept my hands on my belly, not ready to not be pregnant with him anymore. I would never feel his powerful kicks as he grew bigger. I would never have the opportunity to wish for his foot to move from my ribs, or feel him get the hiccups. I was not ready for him to have to face the world before it was time,  feeling devastated as if my body had let him down and I couldn’t keep him safe. On the other hand, they couldn’t hurry fast enough. They had determined it was now too dangerous for him to stay in the womb, and I wanted them to get him out of the situation that was hurting him.

I remember sitting on the operating table while waiting on the spinal block, slumped over and feeling as if I was carrying the weight of the world on my shoulders. My doctor walked in and saw me, and in his caring manner he came over and rubbed my back. The wall that had been carefully placed to keep the tears at bay came down, and I no longer could hold them in as he tried to assure me and tell me it would be OK. I remember telling him through my tears that it wasn’t me I was worried about. I knew not far from where I was being prepped was another team, a team that was preparing for their new very tiny patient.

While they performed the Cesarean section to deliver Kaleb, I could do nothing but stare overhead at the lights as I waited for them to announce his birth. The prayer that I prayed to my older son Kaden each night for the first year or so of his life kept coming to mind. As a new mother, I would hold a sleeping Kaden in my arms beside his crib. I would be exhausted and ready for a break, but I remember feeling scared and having a hard time finally laying him down. The world is a scary place where one never knows what could happen; SIDS, disease, tragedy, etc. I also knew that each time I put him down, the next day he would be one day older, one day closer to no longer being the sleeping baby in my arms wanting mommy cuddles. So I would pray.

This was the prayer that came to my mind as I lay on the operating table. I said it for my first son, so I would say it for my second, no matter what the future held. “Lord, thank you for this child, your child. If it be your will, please allow me another day to be his parent, and with that day help me to remember the honor and responsibility that comes with it. Help me guide him and teach him. And always help me show him your love.” I added on, “I don’t know the future for his life, but I believe you do. I know you have a plan for him. Be with me; help me be the mother he needs.” I then awaited the birth of my second son.

Baby Kaleb in the incubator
Amanda’s son, Kaleb.

I will forever be grateful for two things. First, we still got to hear him cry when he was born. I had never appreciated a cry so much. Second, I was able to see him. I had been told that I more than likely would not get to see him until they took him to the NICU and I had a chance to recover. Kaleb in true Kaleb fashion showed us all by being stable enough that they could bring him around for me to see him. I was and am so grateful for that moment. So tonight I will give Kaleb those extra cuddles and stare at his little hands, his chubby cheeks, and every other feature that makes him Kaleb. I will try to memorize and record each of them to memory. I will attempt to catch up on all the cuddles we missed out on the night of his birth, and the 14 weeks that followed in the NICU.

I look at him and think of the night of his birth. I was finally wheeled to the NICU after recovering for a time. I braced myself to see him as I knew he would be, hooked up to various monitors and looking so fragile and tiny. I looked at him and grieved for the rest of the pregnancy I lost. I grieved the time lost after labor that we should have had, where we would have looked at each other after he was placed on my chest as we begin to bond, studying and learning each other. Instead, I watched him and listened to the machines and monitors. I asked the nurse and was allowed to reach in, and I touched his little arm.

Six months ago tonight, we were completely uncertain of Kaleb’s future. Six months later, we are home. Six months ago he was a 2-pound, 2-ounce baby with a full head of dark hair. Six months later, he is an 11-pound baby with a full head of uncontrollable dark hair. He has continuously amazed me with his strength and his attitude. I love our talks. I love our cuddles. I love watching him and Kaden together, seeing Kaden’s unconditional love for his little brother. I am constantly reminded of my prayer the night of his birth. “I don’t know the future for his life, but I believe you do. I know you have a plan for him. Be with me, help me be the mother he needs.”

Kaleb, I still don’t know what your future holds any more than I know Kaden’s or my own — but I do know part of the plan for your life: to teach me. To teach me and show me more about this world and more about love than I ever knew. So thank you for these past six months, and I look forward to many, many more.

Holding Kaleb, a small preemie baby with oxygen tube
Amanda holding baby Kaleb.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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