November is Prematurity Awareness Month, and it’s also Madeline’s birthday month. I am missing my girl so much. We should be preparing for an eighth birthday party and a house full of second graders. When November rolls around, I have a lot of flashbacks to our time in the NICU with Maddie. I’m reposting a piece I wrote last year about what it’s like to be a Preemie Parent. If you know a Preemie Parent, reach out to them today. Let them know you’re thinking about them, and their child. No matter how old their preemie may be, they’ll never lose that lingering fear, never forget the smell of the NICU soap, never forget how small their baby once was.
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.
Next week is the eight 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.
Jordan says:
I love her.
I love you.
And she will always, always be remembered.
Thank you for sharing her (and your family) with us all. ??
Jordan says:
dangit, i thought those heart symbols would work! Ah well.
Chris says:
I love that picture of Madeline. And, I’m thinking of you during this difficult month. Your post makes me wish I could ask my mom more questions about when I was a preemie.
carole says:
I am a preemie parent. My son was born at exactly 28 weeks and considerably under 2 pounds. He was the smallest, skinniest baby any of us had ever seen and spent 8 weeks in NICU and 6 weeks in high care. I was lucky: he did so well. But I was surrounded by people and babies who were not being so lucky and I waited for the other shoe to drop, for it to be my turn to be taken aside by a grim-faced doctor.
Thankfully that never happened. We took him home and I didn’t sleep at night for a week because someone needed to watch him. I kept him by my bed for eight months with a light on so I could see immediately what every snuffle and squeak was for.
And now he is 9. He bumps along the 1st growth percentile (or under it)and he is dyslexic. But he is healthy and loving and wonderful and I will never, ever take that for granted.
Much love to you, Heather, this month and every month.
Samantha says:
Oh, Lord. I don’t know why, but this affects me more now than it did last year. This past July my niece would have turned 3. She was roughly born 5 days shy of my daughter’s 1st birthday. She was born at 25 and a half weeks gestation and did really well for about 2 1/2-3 weeks after being born so early. My sister got to hold her and she was just starting to be fed breast milk, but right around 3 weeks after she was born, my sister posted on Facebook that Sophia had taken a turn for the worse, but they (my sister and her boyfriend) were hopeful she’d pull through. Unfortunately, she passed away just days before she would have been a month old. Every October and November, I send her a special message letting her know that I’m thinking about her and every July just before my daughter’s birthday I send her a note telling her that I remember Sophia’s birthday. Both my sisters’ babies were born premature (Sophia was born at 25 1/2 weeks and Kylee was born at 35 1/2 weeks, she stayed in the NICU for 3 weeks) and I look at my daughter who was born at 38 weeks (healthy and no NICU stay)and think about how I was lucky enough not to be a preemie parent, but I also think about my sisters’ being preemie parents. My sister had a rainbow baby and thanks to how her first pregnancy went (much like your doctors found out about you), her son was born at 37 weeks and is now a healthy, happy, almost 2 year old. Many blessings and many prayers for you and your family from over here in Michigan.
anonymous says:
I am a preemie parent. My son was born at 25 weeks, after a totally uneventful pregnancy – thanks cervix for your incompetency! I walked to the hospital to have them check out some weird cramping I was having, and 4 hours later, my son was born, under 2 pounds and bruised from head to toe due to the effects of labor on his tiny body. We endured a grade IV brain bleed, lung bleed that nearly took his life, unexplained skyrocketing blood pressure, ROP, a heart valve that hadn’t closed at birth like it was supposed to (weird that I can’t remember the medical terminology for that now; it was burned into my brain for a long time) and 85 long days of NICU life. Today he’s 7, struggling from asthma, mild autism, and some other delays, but the happiest, silliest, mouthiest kid I know…and our only, as my second pregnancy didn’t deliver a rainbow. I have been following your blog since he was a tiny baby, and I so appreciate what you do for the March of Dimes (a cause we are staunch supporters of as well) and in promoting prematurity awareness. I will be thinking of Maddie this month, and I love following the antics of your other two spirited kiddos. Thanks for writing.
Christine Koh says:
Sending so much love and all the hugs my friend. I’m holding you close in my heart this month especially. xoxox
Meg says:
To be honest, I could only read parts of this post… and I cried. My son was born in April at 32 weeks gestation and was in the hospital for a month. Though he is doing well now, that lingering fear of being a preemie parent never, ever leaves you. It changes you forever. I have been dealing with awful anxiety and PTSD, and have just now accepted that I need help to get through it. It is so, so hard.
I actually wrote a post yesterday on how to reach out and help preemie parents in honor of Prematurity Awareness Month… it was very healing to sit down and reflect on our NICU experience and how other parents could be helped during the most difficult time of their lives. I hope someone reads it and reaches out to a preemie parent in their lives.
Madeline is on our minds and in our hearts.
Heather says:
Oh Meg, it took me nine months to realize I had postpartum anxiety. I’m so glad you are going to get help – it made a world of difference for me. xoxo
Margie says:
Thinking of you and yours a lot today. Thank you for sharing. I hope no one knows your pain because it sucks to lose something so great and awesome and it’s not fair.
XOXO
Stephanie says:
I always assume finding the right words I want to say to you will become easier. It never does. I’m so sorry that you and so many others were/are affected by prematurity. I can’t do much but I can pray for a medical breakthrough, donate to the MoD, and always, always, remember the babies and families.
Michele says:
Thinking of you and your gorgeous, happy Madeline. Thank you for continuing to share her light with us, and for all that you do for babies (and their parents).
Alyssa says:
So many tears, but lots of hugs and love to you. I am not a preemie parent, but my Aunt was. My cousin was born 3 months early. No one was sure how long or if he would make it. I will never forget when the hospital allowed them to bring him home for Christmas. He was so tiny, with tubes and bags attached to him everywhere. We still were not sure if this would be his first & last Christmas. Being only 20 at that time, I could only guess how my aunt felt. Becoming a mom however made me acutely aware of how I am sure she felt.
Thankfully, my cousin made it. In fact his 14th birthday is tomorrow. Aside from a slight hearing problem and needing speech therapy at a young age because of it, he is now a typical sightly attitude prone teenager with no other complications from being a preemie. He was lucky he made it, many children do not. So while he doesn’t realize at this age that we don’t hug him tighter because we want to embarrass him, we do it because there was a chance that he wouldn’t be here. I hope and pray that there will be a medical breakthrough soon, because no parent or family should ever have to go through this. Ever.
Abby J. says:
I have seen several of my friends affected by premature birth, and I have been following Maddie’s story on your blog for a long time, though I don’t often comment. I am so sorry you and so many others have had to go through the hardships you’ve had being a preemie parent. My thoughts go out to you during this month.
I am so, so fortunate not to be a preemie parent, and it was thinking of you and all my other friends who are preemie parents that convinced me to participate in a medical study during my own pregnancy that looked at causation factors for premature birth. I donated blood, saliva and fluid samples during my own uneventful pregnancy, and donated my daughter’s placenta to the study when she was born. I hope that one day we have answers that can help prevent more parents from suffering what you have.
Debbie Botwin says:
Heather – I’m sitting at a beauty salon with color on my hair and tears dripping down my face. I obviously never met your precious little girl, but somehow I miss her. Maddie will always hold a special place in my heart. Sending you love and hugs.
Nadinsche says:
I love to see pictures of your sweet Maddie. I think about her often.
Glenda says:
Thinking of your during this difficult month. Peace & strength.
Toni says:
Big hugs! I love her beautiful eyes and curls, such a sweet picture.
Jeanie says:
She was so beautiful. That last picture is perfect. My sister is an RN is the NICU of one of our major hospitals here in Sacramento.
wkmtca says:
she was, is and shall always be so beautiful..
Kay says:
I’m thinking of you during this hard month. My 28 weeker is in the 3rd grade. The soap still gets me.
Susan says:
I am not a preemie parent, but I am a parent that had a very sick baby at birth but maybe because he wasn’t a preemie he had more of a fighting chance, I don’t know. What I do know is that because of your beautiful Maddie, I have been made much more aware of preemie’s. I knew but I didn’t. I have learned so much more just through you. Hugs to you.
Terri says:
I think of Maddie so often. Our daughters shared a love of Abby Cadabby. Sending you lots of thoughts and cyber hugs this month.
Sarah says:
Oh, Heather. “I wondered what color her eyes were.” That one got me right in the gut. I am so glad you got 17 months with Maddie. And I am so sorry she is gone.
Brooke says:
Such a gorgeous girl.
Babies just aren’t supposed to die. Full stop.
Andrea says:
Thank you for re-posting this blog. As a preemie parent, these are words that speak to my heart on the deepest level. There are those who don’t understand why my FB page is filled with pictures of my surviving twin son enjoying the simplest things (A Target run, playing on a playground.), things that so many parents take for granted. His life is a daily celebration of what I almost didn’t have due to his premature birth. A NICU stay of 77 days is permanently ingrained in my mind, and has shaped how I parent and view the world. To honor my preemie, I share my story, I warn others about clotting conditions (An undiagnosed condition lead to my preemie.), and urge my younger cousins to get tested to help them avoid this painful journey. My heart is with you and your family this month, and thank you again for being a voice for prematurity awareness.
Lisa says:
The stress you must all go through, I can’t even imagine the fear/anxiety/worrying and having no easy release from it….from the parents, their families, the caretakers…..it has to stop. Will continue to donate every year.