Thursday, October 25, 2012

Dear New NICU Mom


It’s a place you likely didn’t expect- sitting in the NICU, watching your tiny baby fight for its life. It’s a place you wouldn’t choose. And if you’re like me, you had every intention and dream of holding a healthy, plump baby on your chest shortly after delivery. A dream of leaving the hospital, baby in tow. And now, here you sit, watching your fragile baby through a plastic box.

I wish there were magical words that I could write to make this situation better, but I know from experience that there are no words to do that. What I can do is share with you from one NICU mom to another, some words of encouragement.

When our son was born at just 23 weeks gestation, we were terrified. We knew babies were born premature, but never knew they could be born and survive this premature. We had no idea what we were facing.

You’re likely going to be bombarded with folks who care about you dearly. Folks who want to help you. Folks who want to fix the situation and take away your pain. Occasionally they’ll say things to you that will hit a nerve. They may be under the assumption that your baby is just in the NICU because he/she needs to grow a little more (not knowing the battle your child is in). They may demand you stop grieving and ask you to be glad that your baby is still alive. Some may go as far as to say to you horrible things such as, “At least you didn’t have to go to the end of your pregnancy and be miserable” (True story.)
But the truth is, unless they’ve been there, unless they’ve walked this, they won’t know that your heart is broken. They won’t understand that you’d do anything, go through anything if it meant you could just carry your child to term and save them this pain. And they won’t understand that in an instant, your dreams have been shattered and you’re questioning how you’ll ever pick up the pieces, glue them together and start again. You don’t need someone to remind you to be thankful-- you are. It will take some getting used to, but often times you’ll juggle being thankful for your child’s life while being scared to death for their future. That’s ok.
You see, some of us have been there. Some of us are still there. And we want to tell you one thing: all those feelings, those conflicting and sometimes awful feelings, they’re normal. Yep, totally normal. And no, you don’t need to explain them to us. We get them. We’ve had them. We’re still having them.
Plain and simple: the NICU is traumatic. All of the uncertainties, the obstacles your child faces, the pain, the statistics--- it all takes its toll. But you will emerge. You will find a hidden strength that you never knew you had. And you’ll see the strength of your child. You’ll grow amazed and proud of them as you watch them win their battles.

As you navigate these new waters...
...Don’t be afraid to speak up and speak out.  Find your voice and share your feelings and concerns.

...Allow yourself the opportunity to correct others who may misjudge your fears of the future as an inability to appreciate the miracle of your child.
...Grieve. Lots of things have been lost along the way- a normal pregnancy, a normal birth, a normal departure from the hospital... the list goes on and on. Grieve it all. You’re experiencing loss, a huge, unimaginable loss.
...Know that you can’t prepare yourself for the future (after all, no one can predict it) and force yourself to stay in the present. Deal with the hurdles of the day.
...But when your mind does start to ask the “what ifs” about the future (and it will), when you start to doubt the path you’re on, don’t beat yourself up for it. Face those “what ifs” with courage and know that the strength you’re discovering will emerge as you face each and every new trial.
...Remember that your child, not statistics will determine his/her course (these stubborn NICU babies rarely follow the predicted path).
...And finally, know that you’re not alone. Some of the most therapeutic times are found in the NICU when moms begin to connect. Share stories with each other. As you begin talking, you’ll likely find that these women who you thought were so different from you, have now become the only ones who understand your heart. Don’t be afraid to talk to them. Chances are, they’ll appreciate knowing that they’re not the only ones feeling this way either.
This journey that you’re on, it’s a battle. It’s likely to take some turns. You’ll make advances and retreats. Sometimes it will feel like you haven’t left the trenches in weeks. But you will emerge. You will make it. The battle will end. And one day, you’ll look back on this time and it will be a blur. A new normal will emerge, you’ll begin to find happiness and good times again and you’ll look on your scars knowing that each one represents something you have conquered.
With Love,
A former NICU mom


Want to pass this letter on to a NICU mom? Click here for a printable version.

 


Lindsay Franks is one of those micropreemie mamas who I immediately connected with when I heard about her son being born at 23 weeks. She blogs about her cutie at Baby Pierce and along with her husband, Nik, works tirelessly for preemie families through their organization Pierce's Project






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44 comments:

Tricia said...

Thank you for this! I know those steps and words all too well.

Chelsea Arledge said...

Wow, this truly brought tears to my eyes. What a wonderful post. It certainly hit home.

Melissa said...

Four years later and we're still dealing with ups and downs. We had a medical setback this week after a year of "normal"...and I feel like no one gets my fear but other NICU moms. Thank you for sharing these incredible words.

Angie said...

This should be given to every micropreemie NICU mom. If I can add just one thing...spend as much time there as possible (w breaks of course) but dont feel like you are not doing anything, your presence and involvement goes a long way!

Marybeth Maxwell said...

I know Lindsay from her teenage years, long before she was a NICU Mom. What I have watched over the years and now over the past 18 months is both awe inspiring and makes me proud to know her. I, too am a former NICU mom and her ability to be so insightful, not just hit the high spots, will soothe many a savaged, broken heart. My 'babies' are now nearly 19 years old, but that feeling of being a preemie mom never completely fades. You watch them grow up, but they will always be as you first saw them...that snapshot deep in your heart of that tiny face...a foot...a hand the size of a nickel. I am so glad there are so many places to come now for moms who are struggling that were not here when mine were in the NICU. Thanks to you, Jessie and Lindsay for your foresight to help others from a place you have already been.

Tasha said...

As a mom of two micro preemies, 26 weeks and 27 weeks, you completely explained all the feelings and emotions felt!

Jessi said...

Every time I've read this (done so a few times now!), I just think this should be required reading for new NICU moms. Like with all the info you get during those first few weeks, this should be something special they set aside to give when the time is right. It is exactly what I felt and needed to hear!!

LMLogan said...

NICU mom here - not premie - but thank you for your insight. Shane's 3months now - been home since 6weeks - but I've wondered, will I ever get past that grieving period? I see preggos - newborns - hear/read birth stories and my heart aches! I'm so thankful for his present health but am still sad at what all happened. maybe because he's my last (3rd) or maybe b/c he'll have years of follow-ups, but it's still hard. I agree - this should be shared with all NICU parents! THANK YOU!

randumbredhead said...

Oh I agree. My little 27 weeker is 3 weeks today, I would have been 30 weeks pregnant and I am jealous and angry and sad when I see pregnant women and newborns. I used to watch baby shows all the time and all I do is cry if one is accidentally on when I turn the channel.

Jacque said...

Oh man, it's been almost two years since my 26 weeker was born but the tears are streaming. Beautifully written.

Cassie said...

I just read this and I think it is perfectly written. Being a NICU mom isnt anything anyone would wish for......ever! People do have the best intentions when they use words and phrases like " at least you wernt in that miserable pregnant stage" but I wanted that miserable pregnant experience!! It was taken away without a choice. However as I lay here watching my son sleep I would give all those pregnant experiences up again if it meant getting to have Caleb in my life! He was a 28 weeker weighing just 2.9 lbs. he weighs 22 lbs now and is 20 months old and he is the love of my life!

Desiree said...

Thank u for sharing this. I wish this would have been given to me. I felt so alone until I meet another NICU mom who had a similar story. She was my saving grace. I'm so honored to call her a friend.

Sandra said...

As A NICU mom I want to thank you for putting into words all that I could not! I wish I had seen this while going through our NICU experience. I was lucky enough to meet another NICU Mommy while we were both on the intensive care/high risk labor & delivery floor. Our babies were born just hours from each other and from that moment on she was my saving grace! I can't say enough about her of what she helped me get through. Your article put into words everything we have talked about & are still going through thank you! I will reread this to remind myself I am not crazy and for any new NICU mom that I meet!

Anna Alvertos said...

I agree, I think every nicu mom should read this. I felt so alone and I still do sometimes. I get alot of those comments and no one understands even thou I have learned to not well try not to let it bother me because they trully dont understand they havent been there.thsnk you for letting me feel ok to have those feelings.

Anna Alvertos said...

I agree, I think every nicu mom should read this. I felt so alone and I still do sometimes. I get alot of those comments and no one understands even thou I have learned to not well try not to let it bother me because they trully dont understand they havent been there.thsnk you for letting me feel ok to have those feelings.

Ashley Cappelli said...

Reading your blog gives me so much hope. I stumbled upon it I think on pinterest. I gave birth on 11-19-12 at 25 weeks to my baby, Chance. Your posting, New NICU mom is VERY relevant at this point. Thank you!
I too started a blog mainly so I can document everything but for my family and friends as well so I didn't have to repeat myself 100 times. www.babychancecappelli.blogspot.com

Love, Ashley Cappelli- Dallas, TX

Anonymous said...

Beautifully written, wish I could have read something like this when my 27 week twins were born
Defintately should be given for all nicu moms to read..

Champa Merai said...

Well said. You summarize it perpectly, no one would ever understand the way we all feel like another mom from the NICU. We are still struggling our battle is not over. I am jist thinking positive & praying

Rica said...

Very well written for a time that words cant simply explain.

Patsy Donnelly said...

My son, a 27 weeker is now 18mths I think?..and yes I am crying. I didn't realize how much this still affects me. He is a healthy happy boy and never had any major issues but we were in the nicu for 92days! My biggest pet peeve is people who act like its no big deal that he was born so soon! This actually happened to me at a mommy group not to long ago. We were going around introducing ourselves and our babies and saying their age. I felt like I had to justify Max's age bc he wasn't yet walking and was 17mths. I swear those other mom's didn't bat an eye! Needless to say I haven't been back.

Christe said...

I teared up reading this. Wonderful post. My situation was different, I did not have a micro preemie but my son was born healthy at 33 Weeks and only stayed 2 Weeks. Still was not how i envisioned my delivery etc. My heart goes out to all of the nicu moms.

Kristi said...

I read this before and loved it, and I still loved it when I read it this evening! I would just like to add one thing: There may come a time in the future where you will worry that you made the wrong decisions, but you need to remind yourself that you made the best decisions that you could with the information you had at the time. I used to make myself sick thinking "what if I had asked for a second opinion about this or what if I had questioned the doctor's plan on that". But the past needs to remain in the past and you need to cut yourself some slack because being a preemie parent is REALLY hard and making decisions about your child's health day after day is so taxing! None of us were trained for this job, but we are doing the best that we can and just trying to make it through each day and each decision with our child's best interests in mind.

Jessi said...

Yes! You are so right.

Christina Bennett said...
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Christina Bennett said...

I had a 29 weeker who weighed 2 lbs 11 oz and every bit of what I just read is true. Also want to express how hard it is to mantain a home while going through this or your employment. Its been hard on my marriage and older children. We still are struggling and my son will be a year old next month. No one will ever understand until you have been through this. My heart goes out to all of you:) sending lots of prayers for all of these babies and there families.

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Tammy Ambuehl said...

It has been almost 6 years since my youngest son was born at 25 weeks. After having two absolutly normal pregnencies, this experience changed me so much I still am grateful for the women in the "pumping room" to celebrate with, grieve with, laugh with, and cry with. My oldest son was 8 when his brother was born. After being in the NICU for 74 days his birthday was coming up and when the doctors asked him what he wanted for his birthday, he told them that all he wanted was for them to send his brother home. To this day his little micro-preemie brother is his favorite person in the world. To those of you facing this experience now all I would say is find your faith, remember your spouse is not the enemy, and take each day one at a time and be grateful for every minute.

Candace said...

Absolutely perfect. This letter gives insight to every single emotion that us NICU moms feel in our hearts. My little miracle baby is almost 8 months old but I am still grieving and trying to heal from everything that happened. I didn't have a normal pregnancy because of all the complications so we were aware that her being in the NICU was a strong possibility but that sure didn't make it any easier! She was there 54 days, the longest of my life, but I put complete faith in God and He carried us through! This letter is so great, and it also helps our families to understand what moms are feeling. Thank you!

A-Team said...

This made me cry but I am truly thankful for this letter. It was a joy to read.

Anonymous said...

38 yrs. ago I was on vacation in Hawaii, planning to move my 17 mo. old into a big boy bed to make room for his new sibling. (We didn't have ultra-sound then.) Went into labor and delivered 31 wk. surprise twin girls totaling 6 lb.11 oz. Two months in NICU (I had never even SEEN a preemie baby). Alone and terrified, learning all about umbilical catheters and blood clots and 100% oxygen and thinking I would have to raise one twin normal and one totally blind and knowing I was not up to the task, having underdeveloped lungs, getting better, coding a dozen times in 24 hrs., getting better, bili lights and anemia and apnea and all sorts of terms I had never heard, and getting better. Finally went home to the mainland 2 mo. later, weighing 6 lb.11 oz. each, but feeling they could have kept them until they were 3 yrs. old, I was so scared and guilty that I felt that way. There were no home health nurses and home alarms and home equipment then. I distinctly remember the day when they were 4 yrs. old that a lightbulb went off in my head, and I said to myself, "They are going to live. You can stop worrying now, they are going to live." Then surprise heart surgery for one at age 6. But she was playing soccer within 3 mo., healthy & strong and fiercely competitive There were no support systems then, my husband had moved on with someone else by then, leaving them without med. insurance. But you keep going on, keep living, keep learning. They ran cross-country at state level in high school. Are now mothers of 4 children each, 3 girls and 1 boy EACH, all healthy plump babies with normal births. Keep reaching out and supporting each other, NICU moms - keep acknowledging the courage and the fear and the miracles that are preemie babies and the breath of life every single NICU mother breathes into her newborn through the masks and the gloves and the glass boxes, WILLING her baby to take another breath, live another moment, overcome another test. God blessed me, and will do the same for you, even if your angel has had to go on to be with Him.

Caitlin Close said...

I wish I had come across this post 18 months ago when my son was born at at 25 weeks. This is exactly how I felt. Every one kept asking me if I felt like a mom yet. It hurt me to say it but it honestly hadn't sunk in yet that I was a mom. Now when I see anyone with the big belly all I can think about is I missed out on that part. Still makes me sad and I have to say it makes me scared to have another baby because I am worried that I am going to have to go through all of it all over again. This letter hit so close to him it really should be in every NICU room for new moms.

Caitlin Close said...

I wish I had come across this post 18 months ago when my son was born at at 25 weeks. This is exactly how I felt. Every one kept asking me if I felt like a mom yet. It hurt me to say it but it honestly hadn't sunk in yet that I was a mom. Now when I see anyone with the big belly all I can think about is I missed out on that part. Still makes me sad and I have to say it makes me scared to have another baby because I am worried that I am going to have to go through all of it all over again. This letter hit so close to him it really should be in every NICU room for new moms.

ipimenta said...

Your words easied a quite difficult day in the NICU. My daughter was born 26-27 weeks, and is now 10 day-old. She is adorable, a fighter, and I love her more than anything in this world. Despite the fact that I have many wonderful friends, I realize that my experience can only be fully comprehended by and shared with another NICU mom. I thank you from my heart for being so generous with your experience, and offering so much to someone like me, a NICU mom in the middle of this roller coaster.

Toni Wells said...

I'm so thankful I have found so many resources including mom's that have experienced what we are going through right now. I'm on the way to see my miracle of 23 weeks as well, this is his third week in NICU. The struggles are silent and at times difficult to navigate through. He is doing very well which is difficult to accept after all the statistics and doctors. Reading these comments as well as this blog has given me a since of peace.

http://5littlemonkeys.me said...

I am a NICU mommy - 9 months in NICU and 18 months on a vent. I could say so much here but there isn't enough space! I wish there were more resources when we were in the "thick" of things. IT is so nice to share experiences and know you are not alone during such a trying and emotionally draining time. Our story is posted as a special section on my blog called "Sammy's story."

Nashi Baby said...

OH WOW! This brought tears to my eyes and I dont the right words right now to express my feelings. Thank you for sharing this.

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Judy said...

Thank you for this, I just shared with a friend that had a 1 lb 2 oz baby girl last night.

Deairra Rodman said...

My little boy (31 weeker) was suppose to be a week old today. Worrying constantly was the hardest part of this journey. I think though this is a wonderful and every nicu mom needs to read.

Jhon Abraham said...

Well said, life is the most beautiful thing that any human being would like to concentrate on.Every one has their own dreams, but defining What are dreams is too difficult for them.

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