Hand holding a baby's foot in the hospital

To the New Mom of a Baby in the NICU

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First, I want to tell you congratulations on your precious baby. This is not how anyone expects the whole “having a baby” thing to go. When we get pregnant for the first time, it does not occur to us that we might have a baby way too early. We don’t plan for it.

I would like to tell you so much, but for now, I want you to know a few things.

You are a wonderful mother. 
When my daughter was born at 26 weeks, I felt incredibly guilty. I had done everything in my power to keep her healthy and inside as long as possible, but even though I tried so desperately hard, she still came early. Just because your baby came early does not mean you did something wrong. You are a wonderful mother.

You are your baby’s advocate. Sometimes it will not be easy, but please remember to speak up if you are not comfortable with something. Ask the doctor or nurse to explain what is going on and why. Stay informed. If you feel like something is wrong with your baby, bring it up. This is your baby, and honestly, no one knows your baby better than you do.

It may be a long, difficult road. A lot of people describe the NICU as a rollercoaster because there are so many ups and downs. Celebrate the “ups” no matter how small they are. Find the “ups” whenever you can. When the “downs” come around, and they will, lean on your friends and family. You don’t always have to be strong. The best advice I received while my daughter Ellie was in the NICU was from my mom. It was the day I was discharged from the hospital. I was distraught about leaving Ellie and going home. I didn’t want to leave with empty arms. I just could not figure out how we were going to do it. How were we possibly going to get through the next several months with Ellie in the NICU? Here is what my mom said:  “We will get through this. One day at a time.”

Take a lot of pictures. There were days we were not allowed to take pictures of Ellie because they were afraid the flash and having her isolette uncovered would be too much for her. So, whenever we could, we made sure to take pictures. Take pictures the first time you get to hold her. Even if you have to insist on having someone right there with you to take the picture, have the picture taken. I almost did not get a picture of my first time holding Ellie because my first time holding her was skin to skin. They did not want anyone else in the little closed-off space I was in; they thought it should be a “private moment.” I will never regret having those pictures taken. I treasure those pictures. Take pictures of the first time your baby gets to wear clothes. Take pictures of your baby when she is wearing her mask for the bili lights. Take pictures of the tiny diapers she is wearing. Have pictures taken of you doing diaper changes and temperature checks. Have pictures taken of you just sitting by her isolette. I don’t believe you will ever look back and think you took too many pictures.

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

Life will never be the same. Having a baby in the NICU will change you forever. There is not a day that goes by that I do not think about the advanced medical technology that helped save my 1-pound, 12-ounce baby girl. I think about all of the days I spent sitting by and staring at her completely covered isolette. She was so early and required so much oxygen assistance that the cover had to stay on. Those were hard days, but we did what was best for Ellie. I think about all of the tests she underwent, all of the heel pricks, brain scans, chest x-rays, intubations, hearing tests, eye exams, bradycardia episodes and so much more.  I think about and can still hear in my mind all of the beeping from the machines that were keeping her alive. I think about how terrified I was each time I left the hospital, afraid that it would be the last time I would get to see her alive. Above all, I think about how it was totally worth it all and how blessed we are to have our now, nearly 4-year-old, healthy and active little girl.

Find ways that make you feel like you are contributing. When my daughter was in the NICU, I felt as if she was not my own. I tried to do everything I possibly could to feel like I was contributing to her care. I lived for the diaper changes and temperature checks. When I was unable to have her isolette cover off, I would read her books with the cover on. There were days they told me not to talk because it would be too much stimulation, so I just sat there and silently prayed. When she finally hit the weight that she could wear clothes, I made sure I was there to pick out her clothes. I even wrote notes to different nurses that would come on duty later on to tell them a little bit about Ellie. We rarely had the same nurse, so it made me feel better to leave a note for the nurse who would be taking care of her while I was sleeping.

Having a baby in the NICU is not easy, but you will get through this — one day at a time.

Love,
Your friend and the mother of a NICU baby

Image via Thinkstock Images

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4 Reasons I'm Glad We Braved the NICU Reunion

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Not long after our son was discharged from the hospital after his short NICU stay, I received a little card in the mail inviting us to attend an annual NICU reunion. I didn’t give it too much thought in the middle of our busy life and quickly scribbled off a yes and slipped the RSVP back in the mail. I jotted a note on my calendar and didn’t think about it again.

Then over the course of the next few months, life with our son changed a little bit. We had reached a new point, and I felt like we had gotten past all of those “preemie problems.”

Except apparently we hadn’t. Feeding became a big issue, we started seeing some specialists we hadn’t even needed in the NICU, and it became apparent that a more medically involved path was going to be our reality. I felt like we were going backwards and the rest of the world was moving in an entirely different dimension than I was. Rare diseases and lifelong struggles were brandished around, discussed, discounted, and returned to.

We still don’t really know, but the point is the NICU reunion went from a fun way to show off what a perfect big boy my son has gotten to be to one more reason to visit the hospital. One more appointment. One more thing that reminded me our baby experience was anything other than “normal.”

The day arrived, and I literally crawled in my bed fully dressed almost in tears not knowing what to do. I had this feeling like I needed to go, like it was somehow an important thing to do, but I didn’t want to be in a big crowd of people. I didn’t want to spend more time at the hospital. We had been running for weeks, and I just wanted a break.

And then we went anyway, and I could not be more grateful we did. Here are four reasons I’m glad we braved the NICU reunion:

1. Validation. Sometimes I can hardly even believe the rough start my son had in life, how much he has gone through and how hard we have all worked to get where we are. As I walked down the table and picked up each of the beads that my son earned during his NICU stay, I felt a strange awareness of it. This was real, and we survived it. I need to hear that, particularly when I’m wondering at times if we will survive the new challenges we face.

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

2. Camaraderie. In 13 years of parenting, I have never had as many dirty looks and comments about feeding my babies as I have in the time since I started bottle feeding my son. It seems everyone has an opinion or answer to solve our breastfeeding failures. And yet, I have come to see our breastfeeding story as one of success. We made it a long time battling some really complicated stuff. When people give me looks or make comments about my cart full of expensive hypoallergenic formula I am reminded our story is not deemed successful by traditional standards. But at the NICU reunion? No one cared. Babies were breastfed, babies were bottle fed, babies were tube fed, babies had central lines. Conversations continued around the feeding of babies in a variety of ways. We discussed follow up appointments, developmental milestones, and favorite specialists. No comparing, no judging. No one asked about his size or if he was (talking, walking, etc.) yet. Just understanding.

3. Memories. We did an art project, played with instruments, and more. It was kind of like a baby and me class  he’d never been able to go to before. Sometimes it is easy to leave out the fun stuff in the midst of all the hectic, but making good memories is important even during challenging times.

4. Hope. According to the first invitation we received, we will continue to receive a new invitation for each of the next five years. Looking around, I found myself humbled to be surrounded by a courtyard full of kids who had hard starts like my son. They were laughing, playing children just like any other. Even those who clearly have continued to have struggles. I needed to see that. I needed to know we are going to figure all of this out and that our son’s future is bright.

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6 Things to Know About Being a Preemie Mom

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1. People say we are so strong. But when you think about it, what other choice do we have?

Crumbling under the pressure isn’t really an option, even when it feels like hell. Through exhaustion, tears, fears, pumping — we keep going for our little ones. You never know how strong you are until being strong is your only option.

Allow us to let our guard down, be an ear to listen, a shoulder to cry on — sometimes this small gesture goes a long way. Being a preemie mom can feel lonely and push us into a place of isolation because we feel like no one understands our worries and concerns. Not to say that new moms don’t feel this, but a preemie mom feels the weight of worry in a different way. Seeing our baby hooked up to machines and tubes and wires is scary and even traumatic.

Preemie moms (and dads) are some of the world’s strongest people who by faith and perseverance press through. Seeing my son Jaxson fight to live daily strengthened me along with my faith and prayer. If you are friends or family to someone who has a baby in the NICU or even if baby is a preemie and at home, I suggest praying for them and their parents.

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

2. Caring for our premature child is not the same as caring for a full-term baby. 

Sometimes we may see a full-term baby and feel a little sting; this is normal. It doesn’t mean we harbor bitterness or resentment; it can just be a little hard to see, especially when it comes to development or seeing a healthy baby when ours may be on oxygen, or have a g-tube or other health challenges. We don’t mean any harm if we get emotional seeing a pregnant woman or maternity photos we may have never gotten a chance to take.

Also, with a premature baby additional needs are required — our baby may have lots of doctor’s appointments, specialist appointments, etc. Life is a bit more hectic and busy, so we may not have time to sit and talk on the phone or go hang out like we used to. Some days may be sad, while others are smooth. This doesn’t mean we don’t want to be your friend, but that the baby’s needs are great, and adjusting to life after the NICU takes time for everyone involved. Be there for us while we work our way through navigating the ins and outs of our journey.

3. Words hurt. People can say some really harsh things without even thinking before they speak.

Try to remember that our trigger points are a bit more sensitive. Don’t say, “At least you didn’t have to waddle around with a huge belly until nine months,” or “Well at least you get to sleep while they are in the NICU.” No. Just no.

Most people don’t realize that while you’re away from your child, you can actually lose more sleep. Each day our baby spends in hospital is hard. It’s a piece of our heart that’s missing. The emotional toll and anxiety makes it hard to really rest until your child is safe in your care.

Try to be patient with us. We may look strong on the outside, but parts of us are fragile.

4. When we are asked the question, “Why did you go into preterm labor?” it may open up an emotional wound.

Try not to ask this question. Some women know the cause, and many others do not. We know you are just being inquisitive or making small talk and probably don’t mean any harm, but this question can make us feel uncomfortable. This was (and still is) a question I was asked in the following months of Jaxson’s birth. Personally I didn’t like it and felt like it was invasive. In my case there hasn’t been a definitive reason as to why I went into preterm labor. Sometimes I, too, ask myself why. Needless to say, try to avoid asking this and let the mom open up to you about her experience on her own terms.

5. The journey to parenthood is different for everyone.

Birthing and raising a premature baby is life-changing in such a way that your friend, sister or daughter may have different views and values on life after going through it. Try to be mindful and understanding of this. For most preemie moms, the experience can be traumatic and may cause PTSD, anxiety, insomnia, nightmares and other things, which I myself experienced. Offer your support as best as you can and know that we
appreciate it.

6. Our baby coming home may mean we’re overprotective and cautious about practically everything.

We are terrified of germs 10 times more due to our baby’s immune system. Washing hands, changing our clothes once we come from outside, using hand sanitizer and sometimes avoiding public places is part of the package. Because of our baby’s prematurity, they are susceptible to getting sick easier and possibly have to be admitted to the hospital. We don’t want that, so if we are out and someone coughs around our baby, you might get a side eye while we work our way to the other side of the room.

If you are a preemie mom and reading this, please know I’m cheering for you. I celebrate you today and am proud of you. Hang in there when the times get tough, and if you need someone to walk this road with you, I’m here for you.

Thank you to all the people who have personally supported my family. We appreciate every prayer and good word spoken over our life and the life of Jaxson. It takes a village to raise a child, and we are blessed to have ours.

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To the Nurse Who Was There for the Birth and Death of My Son

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Dear labor and delivery nurse,

Four years ago we met under some terrible circumstances. You were my nurse the day I delivered my son at 23 weeks gestation.

That is a day I will never forget, and you are someone I will never forget. It cannot be easy to be the labor and delivery nurse taking care of someone you know is about to lose her baby.

You were kind to me on the worst day of my life. You cleaned our son up, swaddled him in a blanket and gave him to us to hold. You held our precious little boy like he mattered. You silently stood in the background during the two hours he was alive. You had to check every once in a while to see if his heart was still beating. I cannot imagine how hard it must have been for you to do that. After his tiny heart stopped beating, you gently carried him over to weigh him and measure him. You waited to do all of that until after his heart stopped beating so we could hold him while he was alive, and for that time you gave to us, I will be forever grateful.

You went out of your way to find a hat that might come close to fitting our tiny little boy. In fact, you went out of your way to find two. They were still entirely too big, but you tried the best you could with the supply that was available. You let us take our time saying goodbye to Robby. You did not rush us. When our family was done saying goodbye to Robby, you took him in your arms like he was a baby who was still alive, and carefully carried him away. The moment I handed him over to you was one of the hardest moments of my life, but your kindness helped. You handed me the first hat he wore so I could hold onto it. That hat is the only physical evidence I have of him and for that, I will be forever grateful. Then you took the second little hat that was identical and placed it on his head as you took him away.

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

After we handed Robby over to you, you made sure I was moved to a different floor. Being on the labor and delivery floor and in a labor and delivery room was too hard. I did not even have to ask – you just moved me to a completely different floor, a floor where there were no sounds of all the joyous others who were delivering full-term babies to take home. A floor far away from the room I had just painfully lost my little boy in and for that, I will be forever grateful.

The next day you came up to my new room and  brought me a fresh chocolate chip cookie from the cafeteria. You wanted to check on me to see how I was doing. You helped me on the hardest day of my life and for that, I will be forever grateful.

Thank you kind nurse for being so thoughtful, understanding and caring during that terrible time.

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When a Man at the Pizza Parlor Said I 'Needed a Do-over' After My Son's Premature Birth

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Dear sir at the pizza parlor,

What you thought was a joke was in fact an insensitive comment. I don’t need to be reminded by a complete stranger that I might have missed out on a few experiences by giving birth 17 weeks early. But to imply my son’s life should not be celebrated and almost dismissed is absurd. He fought like hell to live. What you fail to realize is that despite his early arrival, we have gained so much more than we “lost.” We believe God has redeemed the time like never before.

You tried to spark a conversation after seeing Jaxson and myself in line paying for our food. You asked how old and what gender my child is. Being polite, I answered and told you I have a son and he is 11 months. “So when are you having another one?” you asked, even though we’d never met before.”Not anytime soon,” I replied. “We are OK with just one right now. We have had a long journey with him being born premature and spending months in the NICU.”

Some may say I opened myself up to your “candor,” and to that I disagree. I had no idea this brief chit chat would take a turn. You said to me, “definitely need to have another one, you need a do over!”

To say I was completely shocked is an understatement. Jaxson has been home for eight months now, and just about everywhere we go, someone has something to say. I have pretty much heard it all. But this one, well this time was different.

I have never thought to myself that my husband and I need to have another child just to get a “do over.” There is no guarantee if I were to get pregnant again I would go full term. Because of everything that has happened, I am now considered “high risk,” and the road to giving birth would be quite complex. The decision would be one my husband and I make because we want to expand our family.

mom and baby smiling

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

People may look at what we’ve gone through and think different things. Some may look at our blessing as a curse or something we should feel bad about or ashamed of. But we choose to celebrate the miracle that is Jaxson. God has blessed us and enhanced our lives so much.

If I had to do it all over again, I wouldn’t change a thing. I did everything right. There wasn’t anything more I could personally do to have prevented the early arrival of my son. Of course in the beginning I beat myself up about everything and blamed my body for “failing” me. But I didn’t do anything to compromise the health of my baby. And because of our journey, so many others have been blessed and will continue to gain insight and inspiration.

So no, Mr. Pizza Guy, I don’t need a “do-over.” I am completely happy with my life and how everything turned out for us.

Have you ever had to deal with rude comments from strangers in regards to your baby? If so, how do you deal with it?

Follow this journey on Miracle Mama.

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When Doctors Saved the Life of My Premature Baby Who Wasn't Considered Viable

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Something just didn’t feel right. My stomach churned and the nausea set in as I realized the unimaginable: I was going into labor. Nurses rushed to my hospital room as a flurry of chaos surrounded me. I tried to stay calm, but as I looked at my husband, the tears and sobs set in. I glanced over at the wall where nurses had made a chain link, counting down the days to viability. Two little links left on the wall. Those two days would get me to 23 weeks — our goal for my failing body. But we didn’t make it. At 22 weeks, five days, I went into labor with our triplets.

We had been preparing for this moment for weeks. At 20 weeks gestation, my water broke with our first triplet, Abigail. I lied awake in my hospital bed as I pondered what might happen in the coming hours. To our surprise, my children were content; the warm blanket of my body provided the comfort they needed to continue to grow.

As the long hours stretched into days, we began daily meetings with doctors, discussing our best and worst case scenarios. For each week that my pregnancy progressed, the better chance our triplets had of surviving. We heard endless statistics and the challenges we faced if our children were born at 23, 24, 25 weeks gestation.

The doctors were practical, not sugarcoating the prognosis, but they still gave us a glimmer of hope. While other hospitals won’t intervene until a baby reaches 23 or 24 weeks gestation, our hospital believed in giving our children a chance if possible. And that was the case on June 23, 2013, when I delivered our triplets at 22 weeks, six days.

Our story is far from picture perfect. Our first triplet passed away within two hours of birth; our second triplet died just shy of two months old. Our surviving triplet spent nearly four months in the NICU, overcoming a mountain of hurdles before finally coming home to begin her life. The long, bumpy road is now a distant memory. Our 22-weeker is happy and healthy today. Peyton is our 1-pound miracle, and according to her doctors, she is completely caught up developmentally at 3 years old.

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

We know she is the rarity. Our children were given a less than 10 percent chance of survival. If they survived, their chances of leading a healthy life with few complications were slim. Luckily, fate was on our side. Our doctors gave our children a chance at life. But many families aren’t so lucky.

Over the years, I’ve heard from hundreds of parents of premature babies. Some share their miracle stories that mirror my daughter’s journey, but I often hear stories of lost hope. I hear from parents wondering why my children were given a chance when their hospital only offered “comfort care,” allowing the family to hold their baby as it died in their arms. Every time I hear those words, a little piece of my heart crumbles. Every time I think about a child not given a fighting chance, I look at my daughter, Peyton. I imagine what life would be like if I walked out of our hospital empty handed, always wondering: What if?

Even though two of my children eventually passed away, each one of them was given that fighting chance. However short their lives were, we created memories, and that’s only possible because our doctors stepped in with life-saving measures.

It’s a difficult decision whether to treat children like mine. There is no way my triplets would have survived without the intensive care they received. Babies born between 22 and 24 weeks are in a grey area, hovering between life and death. But research has shown that babies born at 22 weeks can survive, according to a story in The New York Times. And, in rare cases like ours, the child can thrive.

So what can be done? I’m not asking all hospitals to lower their viability standards. Many hospitals are simply not equipped to treat babies that tiny or young. But, more can be done, and that starts with education. No mother plans on having a premature baby, and the complications can happen in an instant. We need to educate parents and let them know their options. In some cases, they can be transferred to other hospitals that can better treat the youngest babies. In other cases, it comes down to communication and a better understanding of the hospital’s policies.

June 23, 2013, and August 16, 2013, are the two worst days of my life. Those are the dates that two of my triplets died. But with the heartache comes happiness as I think of the memories I created in their short time here on earth. Abby and Parker may have been tiny, but they’re making a huge impact in so many lives around the world.

As for my miracle survivor, we know that Peyton could face struggles down the road due to her premature birth, but we’re ready and prepared. Peyton continues to climb mountains, conquering everything that comes her way. She is living proof that miracles do exist, and she’s the poster child for why even the youngest babies should be given that fighting chance at life.

A version of this post originally appeared on Her View From Home.

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