A Preemie Mom to Preemie Daughters

This story was shared with us by preemie mom Emily. To share your own story, click here.

The NICU has been with me since the day of my birth. I’ve known that colloquial acronym for the neonatal intensive care unit for as long as I’ve known a child’s basic vocabulary, because I spent ten weeks there as an infant.

I never expected I’d be in one again, twice, as a parent to my own premature daughters.

I was born twelve weeks early, in the late 1970s, weighing 1 lb 15 oz, or 858 grams if you want to put it in the terms of the neo-natal intensive care unit. I stayed in the NICU for ten weeks, experiencing the stories that shaped my childhood questions to my mom of “tell me again about when I was born!” I learned that I’d had to learn how to breathe on my own, that I’d nearly died more than once, that doctors and nurses (always the heroes of the stories) had saved my life more than once, and that priests had baptized me more than once, just in case. I learned that the scars on my neck came from feeding tubes, and that the roughness on my heels served as a reminder of weeks and weeks of heel-prick blood draws. I learned that the one picture of me in my baby book – head too large for my body, skin too dark, eyes too wide, even though it was my homecoming day – didn’t look anything like the pictures of babies I saw everywhere else. I learned, too, that preemies are survivors and fighters, that life isn’t always easy for us, but we cling tenaciously to what we fought so hard to achieve.

When my own kids came along, larger and healthier and with far shorter NICU stays than I myself had faced, I broke all the rules.

My first daughter, now a happy and thriving seven-year-old, was born at 4 lbs, 9 ounces, at 34 weeks and 6 days gestational age. One more day, or a few more ounces, and I could have taken her home with me. She breathed room air, and nursed just a bit on her second day. I understood they had to prick her heel; that was how preemies had their blood drawn. But did she really need an IV tube in her head, the only place they could find a vein that worked. She looks so healthy, I kept insisting to anyone who would listen. I was too tired, too stressed, too stunned that an otherwise pretty healthy baby could still be a preemie, to see that the nurses needed to let me relax and let them do their jobs.

When we brought her home after a mercifully short 9 days, I nursed her as much as I could, switching her off bottles as her strength increased, until almost all her food came direct from the source. We took her on a stroller walk on a glorious fall day just 2 days after she came home. I carried her around town in a baby wrap, and people wondered at the tiny creature, smaller than most newborns, tucked safely inside. I took her to the grocery store, the mall, and to a fiber arts conference. Her grandparents chided me, reminding me that someone so small needed to be protected from germs, sheltered, until she was stronger. She nestled against me in her carrier, secure, content.

Around three years later, I became pregnant again. No one expected another prematurity, but once again, there was another premature rupture of membranes, another wee-hours trip to the hospital, another emergency c-section, except this second baby was even smaller and even earlier than her big sister. At 33 weeks and 5 days gestational age, weighing 3 lbs 10 oz, she weighed almost twice as much as I had at my birth. Breathing room air but still very small and unable to maintain her temperature or weight, she spent her first two weeks in an isolette. Tubes ran up through her lingering stub of an umbilical cord, delivering precious nutrients so she could grow.  Eventually they switched her to an NG (nasogastric) tube, going down her nose and delivering the precious colostrum and milk I’d started to produce directly to her stomach. I touched the scars on my neck. They itch sometimes, and occasionally people ask me why I have them, but for the most part, they’re no more noticeable to me than a freckle.

The night before my own discharge from the hospital, knowing I was leaving yet another baby in a doctor’s care, I squeezed colostrum onto my freshly-washed pinky finger, and put my finger in her tiny pink mouth. She latched on immediately and sucked eagerly at the finger that tasted of milk. Leaning on the isolette, I cried tears of relief as I felt the strength of her lips closing around my finger, the strength that they’d need to pull life-giving milk from my body. Deep inside, my maternal hormones knew from that suck that, no matter the tubes and machines that stood in our way now, soon we’d be all right.

After my younger daughter’s discharge, I broke the rules again. I wrapped her in a gauzy wrap and took her to the local botanic gardens, her tiny feet sticking out at the bottom. We went to summer music festivals, and she slept as her sister danced to the strains of Beethoven and Tchaikovsky. At three months old, we flew on an airplane to celebrate my grandmother’s 90th birthday. But when she needed extra help crawling, walking, and talking, we contacted early intervention services, and got her the help she needed.

There’s no rule book to being a former extremely low birth weight preemie who becomes a parent to her own preemies. My daughters and I made the rules up as we went along, but some rules stay the same no matter the parent, no matter the length of NICU stay: preemies are fighters and survivors, and we grow up to lives marked by prematurity, but never solely defined by it. All the tubes and nights of worry turn into lives of determination, strength, and love.

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Parents of Preemies Share Their Preeclampsia Symptoms

For Preeclampsia Awareness Month, we asked our community of preemie moms to share the symptoms that they had. Some looked a lot like normal pregnancy symptoms while other preeclampsia symptoms were definitely more alarming! And in few cases, preeclampsia was diagnosed with no symptoms at all!

While preeclampsia is relatively rare, it’s important to watch out for symptoms because left untreated it can develop into HELLP syndrome or eclampsia. It can also hurt your baby! Your doctor or midwife will screen you for preeclampsia at every prenatal visit by taking your blood pressure (and testing your urine for protein if it’s high), but if you know what to look out for you can potentially catch it early – before premature delivery is the only treatment option left.

Here are some of the symptoms our preemie moms shared:

The first thing I noticed were the flashers (visual changes). Then I had two of the worst headaches of my life. I had one high blood pressure reading at the doctor, and I also had high levels of protein in my urine. The Friday of the weekend that I had my son I had gone into the doctor for tests and to turn in another round of 24 hour urine collection. That evening the doctor called me and told me all of my tests came back as slightly abnormal. That coupled with headaches, high levels of protein in my urine and the high blood pressure made him very concerned. ~ Nathalie

I had swollen feet and major vision disturbances… it looked fuzzy like an old tv screen without service. ~ Amanda

Waking up to swollen feet, which would subside during the day but reappear when laying down. As a person with a typically low blood pressure I went in because my head was pounding and I was vomiting. My BP was 190/90+. The doc said that it’s usual for both but it’s not my normal. He missed preeclampsia diagnosis and I ended up with a preemie. ~ Erin

I had no real symptoms other than swelling, which wasn’t enough to raise any alarms. My preeclampsia was found during a weekly OB/GYN visit. It started out as 150/100. I was sent triage, and my numbers kept climbing. ~ Danielle

I had high blood pressure every time I went in for check ups. Protein in my urine that increased meant I had to do the 24 hr collection. I had the nausea and headaches but I thought it was normal since it was my first and only pregnancy, so I didn’t know what to expect. I went in to the doctor one morning due to pain in my upper stomach and back that he thought was probably gallstones. The next day after I turned in my 24 hr collection they called me back in. My blood pressure was sky high, 4+ protein in urine, platelets dropping and my baby was in distress. ~ Tiffany

Headaches! Felt so “off” like I was waking in quicksand. Just an overall feeling of not feeling well. The weight increase started getting crazy. But I can’t stress the headache and migraines enough. Then came the protein in the urine. ~ Karri

In hindsight, I dismissed a lot of the “typical symptoms” like headache, dark spots in my vision, nausea I thought was from getting sick from traveling for work. It came and went and I thought if it was something like preeclampsia, it would be constant… I never should have downplayed my symptoms. I always felt just fine when I went in for checkups. ~ Miriam

I had no symptoms whatsoever; I felt perfectly fine both times. With my first pregnancy, I went in for my 31 week checkup and was told my blood pressure was high and I was spilling protein in my urine, so I was admitted. ~ Heather

Mine started with just feeling off, then swelling and then I had pain in my side. I could not sleep and ended up up getting sick but was sent home after some IV fluid. Went to OB next day and BP was only tad high, but that night I was back in ER with same pain. Next day had an ultrasound at specialist and was sent to the hospital after BP check. After a blood test they came in saying I needed a emergency c section at 28 weeks because I had severe HELLP Syndrome and my liver was shutting down ~ Laura

Swelling! I thought it was normal until it wouldn’t go down! Headaches, which I brushed it off since I’m headache prone. And I just felt off! I’m a teacher and had the school nurse check my blood pressure – she sent me straight to my doctor. ~ Kendall

I had major swelling in my ankles and hands. Headaches and blurry vision. I just thought they were 3rd trimester symptoms. Ended up having an appointment that week (my glucose test) when everything happened. My BP was 184/120. They sent me right over to L & D for what I thought were just some routine tests. Found out I had protein in my urine and my blood platelets were low. ~ Stephanie

Swelling, dark urine, & epigastric pain were the first symptoms. I was admitted to the hospital after severe bleeding, and the night before I delivered I had the worst headache of my life then lost my eyesight. I delivered twins at 25 weeks and regained my vision about 4 weeks later. ~ Melanie

The hardest part for me was that I didn’t have a ton of symptoms. I had some swelling, but I thought that was pretty normal. The swelling got worse, but I figured that I just had it worse off than most people. However when I went to a doctor’s appointment, my blood pressure was around 150/90. I’ve never had any blood pressure issues so this was definitely new. I was given a 24 hour urine collection and made an appointment to follow up in a week. Midway through the week, I noticed the baby wasn’t moving quite as much. My nurse said if I felt worried to go to the hospital. My husband and I decided it was better to be safe, so we went. When we got there, my blood pressure was up to 187/117 and I was told we were going to have a c-section that day. ~ Angela

My BP was a constant battle through my pregnancy, and I had some swelling right before the end. On Sunday, we were walking through a store, and my vision suddenly changed then stabilized. I chalked it up to too much sun but told my doctor the next day at my check up. Test showed proteins in my urine, and I was admitted immediately with HELLP Syndrome. ~ Kristen

Thoughts On Celebrating a Preemie’s Birthday

This post comes from Graham’s Foundation Preemie Parent Mentor Brandi – many parents will be able to relate to her experiences celebrating her preemie’s birthday, which have come with ups and downs.

On Thursday, my son turned two.  We have been preparing for the celebration by making a practice cake and cupcakes with buttercream icing.  We have been practicing blowing out candles.  We have been singing “Happy Birthday.”  

This is the first birthday where I am not propelled backwards into memories of a pregnancy cut short, of the uncertainty and disconnect I felt while watching my son in his isolette, of feeling solely responsible for not being able to carry him to term.  I consistently monitored the developmental milestones to see where he may be falling short.  Overall, he was doing really well.  There were no major issues. His health was good.  When he got sick, it easily went to his lungs and we needed to use a nebulizer.  

He has come a long way in the two years.  Just by looking at him, you couldn’t tell that he was a preemie. He is a taller two year old who weighs 30 lbs and I am still amazed that we both are here. My son’s birth was by emergency cesarean section at 29 weeks and 0 days, due to Pre-Eclampsia and Hellp, weighing in at 2 lbs 13 oz and was 17 inches long. I got steroid shots for his lungs, but they didn’t really help much. He ended up on the Jet Ventilator, medically paralyzed with three pneumothoraces (chest tubes taking out extra oxygen from his chest that has blown out of his lungs).  I could just put pressure on his skin and not gently rub it. I didn’t get to hold him for a week and half because he was too unstable.  They didn’t even weigh him or change his isolette then. My husband and I went back and forth between the hospital and the Ronald McDonald House (where we were staying). Our new normal consisted of rounds and sitting by his bedside and figuring out pumping, bills, who to look after our stuff and what our new routine was.

Fast forward to now, and we are just checking in with our NICU doctor on a yearly or bi yearly basis.  We are still doing check ins with our We are trying out a different and more full of sound world because he had to get ear tubes in the end of December. I am pointing out a variety of different sounds to see if he can notice them and hear them. Now, it is a bit of a waiting and seeing “game.” When I was told by the audiologist that he failed the hearing test, even though our failing marks before would have been 30% and this time was more around 60%, I broke down. I ended up crying and was visibly upset. 

But her response was amazing. She told me the best case and the worst case scenario- he just needs more time and more interaction with sounds to see if he can notice them and respond, or we need to get another test done where he is put under anesthetic and they test the nerve and auditory part of the brain. At worst, he has some hearing damage. At best, he just need more time to experience the world as a fully hearing boy.  

I feel excited. I feel amazed. I feel thankful.  My son is a boy who didn’t have a choice about starting his NICU journey, but he is doing wonderful on it.  It has been and probably still will be a lot like a roller-coaster ride, but I wouldn’t want to ride through this with anyone else. 

15 Things You Might Not Know About Kangaroo Care for Preemies

kangaroo care benefits

The benefits of kangaroo care – skin-to-skin contact between parents and their preemies – can’t be overstated. While NICUs used to recommend that preemies spend a lot of time resting in their isolettes, it’s now common for doctors and nurses to advise moms (and dads) of premature babies to practice kangaroo care when preemies are stable. In fact, even preemies who need a mechanical ventilator or who have acute health issues can benefit from short skin-to-skin sessions with mom or dad!

What do the benefits of kangaroo care look like? Here are 15 really good reasons to practice kangaroo care in the NICU and even after you’ve made the transition home with your preemie:

  1. Kangaroo Care is shown to have a lasting and positive impact on brain development in preemies.
  2. Studies show that kangaroo care has significant long-term protective effects – even 20 years after the intervention.
  3. Kangaroo care has been associated with reductions in hyperactivity and other negative behaviors in preemies throughout childhood.
  4. It has also been associated with better social skills and higher self esteem as preemies grow.
  5. In the NICU, kangaroo care can help regulate heart rate, breathing and temperature in preemies.
  6. Studies show kangaroo care can improve head growth and weight gain.
  7. Preemies who get kangaroo care spend more time being quiet when awake and less time crying.
  8. They also sleep better and more deeply.
  9. And they tend to be more willing to try breast feeding and to be successful.
  10. Which is good because moms who kangaroo their preemies tend to produce more breast milk.
  11. Parents who practice kangaroo care feel closer to their preemies and less stressed about the challenges of prematurity.
  12. And it may help prevent or lessen the severity of post-partum depression in moms.
  13. Kangaroo care can reduce hospital re-admission for preemies and decrease hospital stays, lowering medical costs.
  14. Skin to skin contact stimulates overall physical development and seems to lead to better organ function in preemies
  15. It is also a natural form of pain relief for preemies and can help reduce the possibility of infection in the NICU.

But most importantly, kangaroo care is so often one of the things that preemie parents look forward to the most in the NICU! It’s something both moms and dads can do to help care for their preemies – which is especially important during those early days in the NICU when parents may feel powerless to do anything to positively impact a preemie’s life.

Today Was Supposed to Be Your Due Date

This post comes from our Preemie Parent Mentor Emily – her story will resonate with many preemie parents who wonder if there’s something they could have done to prevent premature birth. The fact is, however, that most premature birth happens without warning for reasons we don’t always understand.

Today was supposed to be your due date. March 15th – it was written in my head in flashing, neon lights. It was going to be the day when our dream of becoming parents would finally come true. Instead, the three of you made your terrifying entrance into the world seventy three days early. Some people said we were lucky, triplets never make it to their due date so at least we had an idea that they’d come early. Yes, we knew that on average triplets deliver at 33 weeks, we knew that having an extended NICU stay was possible, but we’d also been told that the chances of us triplets were approximately 2.5%. We’d beaten the odds on that one so figured maybe that luck would continue.

What no one ever mentioned in the days and weeks leading up to those chaotic thirteen hours when we learned that there was no stopping your arrival was the overwhelming feeling of guilt. I could barely comprehend what was happening as I looked at your impossibly tiny faces for a just second before you were whisked off by strangers whose sole job was to keep you alive after my body had failed you.

Every waking hour was spent wracking my brain trying to figure out where I went wrong. Every doctor, every nurse tried to reassure me that sometimes these things just happen but I was convinced that I was somehow to blame. If only I’d upped my daily water intake, if only I’d stopped working, if only I’d complained less about needing assistance to roll myself out of bed in the morning then maybe I’d still be feeling you tap dance on my bladder rather than seeing your fragile bodies covered in wires and tubes.

Life was suddenly full of beeping monitors and long acronyms, cracked hands that stung with each repeated washing and arms that ached when you weren’t in them. I would wake with a start in the middle of the night thinking one of you had kicked me awake only to remember that you were miles away in a plastic box. I tried to be strong, knowing that one day I’d want you to see pictures of my smile, not my tears. I tried to stay calm so you wouldn’t sense my stress as I attempted to memorize every detail about your delicate lips, your button noses, the little distinguishing features between the three of you. But you lay curled up on my chest, I constantly wondered if you could you hear my heart whisper “I’m sorry” with every beat?

It’s been four years since you three made your dramatic entrance into the world. Four years filled with sleepless nights and toothless smiles, skinned knees, and potty-related triumphs. Four years that have changed my life in more ways that I ever could have imagined. Memories of your time in the NICU have faded to the back of our minds, but they’re always there.

It seems our whole parenting journey is defined by that tumultuous start, those weeks spent sitting beside your isolettes, and the smell of our NICU’s brand of hand sanitizer that still makes me nauseous to this day. For four years that nagging feeling of guilt has been lurking in the background. I feel it at every doctor’s appointment when we’re still dealing with the effects of you being born too early. I dread every time we celebrate your birthdays, having to put on a brave face and smile at your excitement while inside wishing we could stop commemorating the day I failed you so spectacularly.

I recognize that feeling of guilt in other NICU parents. It seems that everyone’s story includes the line “I wish I’d known what I could have done differently.” And although I don’t know if that guilt will ever go away, it is comforting to know that it’s no longer a dominant feeling in my life. There’s no particular light at the end of this tunnel, at least not yet, but it does feel a little less claustrophobic. Maybe it’s simply time, maybe it’s knowing that there are other people walking with me, maybe it’s being able to channel those feelings into something positive by providing a empathetic ear to others on their preemie journey.


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