Madeline, four days after she was born. She’d just had her forehead IV removed, and was on a ventilator, IVs, umbilical cath, pulse ox, chest tubes, and was extremely swollen from the fluids being pumped into her body.
The first time I was told my child was going to die, I was about seven weeks pregnant. There was no way of knowing it then, but those words started me on my path to becoming a Preemie Parent.
The next time I was told my child was going to die, I was nineteen weeks pregnant. My water had just broken, and my doctor gave my baby almost no chance for survival. A few weeks later, that doctor reminded me that termination was an option. Mike and I told her no.
When I was admitted to the hospital on bed rest, the doctors didn’t say my baby was going to die, but they never said she was going to live. The statistics were against her, you see. Babies who PPROM at 19 weeks rarely survive, and those who do have a host of problems. But I’d beaten the odds by not immediately going into labor, and I was certain my baby would beat the odds, too. The doctors told us they’d likely take the baby at 30 weeks gestation, so that was our goal.
I read everything I could about NICUs and premature babies. Being the parent of a premature baby is something no one expects. Your typical expectant parent doesn’t stock up on preemie clothes and diapers, or research medical terms and nutritional techniques. Even though I had some time to educate myself, I was completely unprepared for NICU life – especially Madeline’s introduction to it.
The doctors decided to give me an emergency c-section in my 28th week of pregnancy because I was passing blood clots. They feared I was having a placental abruption, and delivered Madeline over eleven weeks early. Because my water had broken ten weeks before that, Madeline’s lungs were developmentally on par with a 24-25 week baby. It was dire. They transferred her to another hospital with a better NICU. They told me she was going to die.
She made it through the night, but every time my phone rang the next day it was someone telling me she was going to die. Again. For her first two weeks in the NICU, she almost died every day. She was the sickest baby in the unit by far, with two nurses constantly dedicated to her care.
We lived minute to minute. I planned her funeral. I learned metric measurements. I scrubbed my hands under scalding water every time I wanted to see her. I filled a notebook with numbers and abbreviations (SAT, VENT, TEMP). I wondered what color her eyes were. I was afraid she’d die before I could hold her. I memorized every single medication and dosage schedule. I watched her eyelashes grow in. I asked questions, so many questions. I learned when to use my voice and how to be an advocate for my child.
This is the typical life of a preemie parent in the NICU. You make sure you’re there for rounds. You ask when tests are going to be run, and you learn how to read a head scan or lung x-ray. You ask about diuretics. You love the nurses so much. You pump and hope the tiny bit of milk you eek out can help you baby. You live for the moments you get to do normal things like change a diaper or give a bath. You know the NICU is a roller coaster so you’re constantly waiting for something to go wrong. Holding your child is a luxury. You often feel like you need permission to interact with your baby.
Madeline was in the NICU for ten weeks, and we saw a lot. Babies came through with conditions I’d only seen on the Discovery Channel. Babies had medical emergencies and everyone would be kicked out of the unit. Sometimes it was my baby with the emergency.
Sometimes babies died, and I was reminded how close we’d come, and how far we’d come.
Prematurity doesn’t go away after NICU discharge. It follows you to pediatrician appointments and clinic visits. It’s on your insurance forms, and sometimes on school paperwork. It impacts your child’s life for the rest of their life, even indirectly. It also impacts your other children; they might have been full-term but you realize how fragile life is. You’ll never look at anything the same after you’ve held your tiny baby in your hand.
Tomorrow is the seven year anniversary of the day I became a Preemie Parent. Even though my Madeline is gone, her premature birth is still a driving force in my life. She was born during Prematurity Awareness Month, eleven weeks too soon. We got seventeen wonderful months with her, but in the end, prematurity was a cause of her death. In the United States, over half a million babies are born too soon – that’s one in every nine births. Way too many. This has to be stopped.
Every year on Madeline’s birthday I hope there will be a medical breakthrough that helps end prematurity. It’s too late for my Maddie, but it isn’t too late for Annabel and James. I never want them to know what it’s like to be a Preemie Parent. I never want them to hear the words, “Your child is going to die.”
Madeline, four days before she got sick.
Thoughts are with you all on Maddie’s birthday … happy birthday angel girl xx
Much love and hugs to you and Mike, Heather. What a stunning photo this is of your beautiful, little Maddie,,,,,,,,,,,,,,,,,,,,,,
Happy Birthday to Maddie!! My mutti was a preemie parent, and things these days are so different…
I’ve been thinking of you more often lately. Sending love your way. I’ll be wearing my purple tomorrow.
Our son would have turned one last Monday. Even though his heart condition was the major factor in his death, he was a preemie, too. I’ll be thinking of you and your your girl on her birthday.
My thoughts and prayers are with your family on beautiful Maddie’s birthday
I love that outfit, what a great picture. I was thinking abuou you guys last night.
My thoughts are with all of you. Beautifully written, Happy Birthday to sweet Maddie.
I have followed your blog for many, many years – not even sure how I came upon it at this point but it’s the first place I go every morning. Happy Birthday to your Maddie – she has made a wonderful impression on this world.
You and your family are a force to be reckoned with….prematurity awareness will be brought to the masses! Lots of love and purple this month for you.
Happy birthday Maddie!!!! Thinking of you & your family! Xx
I am so sorry. What a beautiful picture of your beautiful baby.
Happy Birthday little Maddie girl! I will be thinking of you and your family.
much love to y’all this week. xoxo
Much love and many hugs to you guys.
Maddie was SUCH a beautiful baby! I have a bone infusion treatment tomorrow and I will be wearing purple for your Maddie. I know that’s not much, but I hope knowing that others are thinking of her might help…even a little.
What an adorable photo of Maddie. With tears in my eyes, I’m sending my love to you and your family. Thank you for sharing your stories with us and for being such a wonderful advocate. Hugs to you
I’m not a preemie parent and I never knew what the March of Dimes was before I read about your family. But they’ve become my charity of choice so I thank you for raising awareness… For your kids and mine. Thinking of you all.
My cousin just had his first baby. A little girl 6 weeks premature. They said she was 2-3 pounds when she was born, her picture shows she’s so small. I pray for her everyday.
Nic S says:
It’s not fair that she’s gone, and I’m so sorry. She is gorgeous.
Eloquent as always. Wishing you strength for tomorrow.
Lori R says:
My heart and thoughts are with you.
Debbie B. says:
Thinking of you and sending hugs.
Leslie GIbson says:
Such a gorgeous girl. My heart aches for you and your family this week. Can’t believe Maddie would be seven tomorrow.
Rita A. says:
You’re so right how having a preemie impacts how you see life going forward. I know it did for me, holding my too small baby, in his life & death. You & Mike will be in my thoughts & prayers tonight/tomorrow. And of course a Happy Birthday to sweet Madeline.
Although I’ve seen many pics of sweet Madeline through the years, I’m always amazed each time I see a new one-such a beautiful girl and those eyes show such joy. Thinking of all of you.
Thinking of you on this difficult anniversary of what should be a joyous day. Thanks for sharing your stories.
And what beautiful eyelashes framed those sparkling blue eyes. Holding all of you close in prayer tonight and always.
I am a preemie parent too – just wish that there were less of us out here. Jake was 14 weeks early. He lived for 2 weeks but never came home. I am so thankful for the doctors, nurses and March of Dimes. Thank you for spreading so much awareness. Hopefully one day there will be no more bereaved premie parents.
Thinking of you, Mike and Miss. Maddie. Sending hope and hugs. xo
Jill Mansfield says:
So much love to all of you. So much.
I wish I could make this different. I don’t know what else to say. Thinking of you and your sweet Madeline, on her birthday tomorrow and every day in between.
*could say something to make . . .
Heather I think of you more than you know, but especially today. It’s already the 11th here. I love you sweetheart. I can’t believe the things you’ve had to endure … but you’ve endured them and shown me that maybe I can endure my things too. I’m so grateful for you.
Madeline is just so beautiful, my god. So beautiful.
Happy Birthday to your family. I was online when I saw your tweets when she passed away (I will NEVER forget your words) and she has crossed my mind thousands of times since then.
My son wasn’t a preemie, but was a NICU baby thru 2 hospitals, 185 days before his 1st day home and 3 surgeries in his 11 years since then. Thank you to your family for being a never ending NICU advocate.
I am a premie mother of two…my boys were born at 29 weeks. They are 17 now, 11 graders working toward college. 6+ feet tall and I will always think of them as my little boys. The 11 weeks in NiCU are etched in my memory forever. You did a fine job describing it, but as we know only someone who has gone through this can fully grasp the experience. March of dimes does wonderful work. My boys would not be here without the results of their research. Blessings to you and yours.
Alyson Sprafkin says:
Beautiful. Wishing you continued strength tomorrow and always. I will be thinking of your beautiful Maddie tomorrow.
Happy birthday to your sweet Maddie and much love to your entire family on this tough day.
Alexandra :) says:
My thoughts are with you on your precious Maddie’s birthday. I really love that picture of her.
Oh, Heather. Even though I’ve read all about Maddie’s journey over the years, the words you wrote were like a punch to the gut. I’m sorry you have to have those memories and remember those words. Love to you!
Happy birthday to your sweet girl. Sending good thoughts your way.
Happy Birthday sweet Maddie.
Thinking of Maddie and your family. Love.
Another beautifully written post, Heather. That picture of Maddie, at the end…4 days before she got sick. No one would have guessed or known. My heart just breaks.
You and your family have been heavy on my heart the past few weeks. I know that today is a bittersweet day: the happiness of the day you gave birth to that sweet butterfly of a girl (she always reminds me of a butterfly or dragonfly–a jewel flitting about with those huge lashings, jewel eyes, and gorgeous curls…and that smile!!!)….but to not have her here with you to celebrate her birthday. Ugh. I know. Thursday would be my nephew’s 5th birthday. He never even celebrated one.
But, today, I remember the joy of your Maddie with you. Tonight I toss the diet out the window and toast your family with a candle-lit cream puff in celebration & memory of your precious Maddie-Moo.
Thinking of your family with the greatest of love!
My son was born at 24 weeks. I remember many of the things you wrote about and explained about the NICU. I also remember the calls that he was going to die. We call him our miracle baby. The other day we were out to lunch and the table next to us had a baby in a carrier and they were saying that they called their baby a miracle. Taylor thumbed towards himself and said, “I bet she wasn’t as tiny as me huh Mom?”
I’m a preemie parent too, and it never leaves you. I never knew how 77days spent in the NICU, would leave such an imprint. I carry those memories, the sounds, the smells, the moments I wish I could forget, in my heart. My heart and thoughts are with you and your family.
You couldn’t be more right that being a preemie parent doesn’t end when you leave the NICU. In the same vein, you didn’t stop parenting Maddie after she left you. Your constant devotion to being her advocate and the caretakers of her legacy isn’t the way anyone would choose to parent their darling child, but the fact that you talk about her and her life and death so honestly is everything. It was YOUR words that got me through being pregnant after a pregnancy loss. It was YOUR truth that helped me when we, too, became preemie parents. Your sharing has helped me be brave and share too and I’m fortunate enough to have been told I’ve helped others who needed it. I’m indebted to you and Maddie for that. I hold you in my heart and though I know nothing will ease the grief and pain of losing her, I hope that knowing what good you’ve created in the world in Maddie’s honor lives alongside it.
Wow Kim, thank you so much. I really needed to read this today! Lots of love to you and yours xoxo
Kristen E says:
Hi, Heather: This is the first post of yours I ever read. Someone shared it with me because I am also a Preemie Parent. And I just wanted you to know that Maddie is thought of often in my house. I told my husband about your story and as I have caught up on your blog, I keep telling him more about you and your family. Thank you so much for sharing your lives with us.