Monday, November 12, 2012

Prematurity Awareness Month - What it's Really Like to Have a Preemie

Imagine what is supposed to be the most exciting time of your life turning into a time of uncertainty and constant worry...and even the scariest time of your life.  That's what having a preemie is like.  Spending each day not knowing if your baby will survive is a reality for many parents of preemies.

Little One was born at 28 weeks and was 980 g at birth. That's just over 2 lbs of butter!

While most women who have had non-high risk/'term' pregnancies get to hold their babies as soon as they're born, moms of preemies sometimes can't even hold their babies for days (even weeks) after they're born. I was able to put my finger in Little One's hand, but that was it.

Not being able to hold her or nurse her right away was devastating.  We just wanted to make sure she was taken care of though, so understanding the limited contact was something that was a reality for us.

Feedings, bathing, diaper changing are all regulated when your baby is in the NICU.  For the most part, the babies are sleeping and are to remain left to rest (babies spend the last few weeks of life in the womb growing, but since preemies are out of the womb earlier than supposed to be, they have to do their growing outside of the womb and in their isolettes). Babies grow in their sleep, so in the NICU, our nurses reminded parents to not interrupt baby's sleep.

In the beginning, Little One could only be handled through the windows in her isolette (incubator). In the beginning, it was limited contact still. As she grew bigger and stronger, we were able to open up the door to her isolette and change her diaper or even take her out briefly and hold her.

Feeding for Little One was through NG-tube (nasal gastric tube). Because babies born so soon have not yet mastered the "suck, swallow, breathe" process yet, they have to be fed via NG-tube. I was adamant that I would breastfeed my baby, and was encouraged by the team to pump every few hours. I pumped religiously and froze and stored my breast milk for the nurses to use for Little One. As the lactation consultant always told us, breast milk is "Liquid Gold" and so important, especially for preemies (with all the passive immunity and other things to help baby grow strong and healthy). This said, in the beginning, Little One had a combo of breast milk and a formula specially tailored for her needs. The 'cocktail' contained vitamins and other things that would keep her healthy and help her put on weight faster. If you think of it, there is nothing to 980 grams! That's just a little over 2 lbs, 3 oz!

The incubator/isolette sort of acts like mama's womb, where baby grows inside. This is why parents are encouraged to only handle baby in their wakeful hours. Babies, preemies especially, need their sleep to grow! Our primary nurse always put a blanket over the isolette during sleep time to block the light and keep things dark for Little One.

Little One also had numerous leads attached to her to measure heart rate, blood pressure, etc. All of these leads are hooked up and the stats are visible on baby's monitor.  This is to ensure that stats are stable.  I was told by the parents whose preemie was 'neighbours' to Little One that we need to not focus on the monitor all the time. It can really drive a parent crazy and cause a lot of stress when  you see numbers swaying or doing crazy things.  Little One was notorious for making her numbers go out of whack (most of the time because she would remove her leads)! She was a pro at setting off alarms and whistles and making the nurses and RTs run over to her isolette!

Spending my days and evenings in the NICU became my new sense of 'normal'. I would get up at 5am, take the bus and subway to the hospital, make sure I was there in time for 'rounds' so I could chat with the doctors and the medical team and hear about Little One's progress (or setbacks), go to the pumping room, pump, eat breakfast, spend the day beside Little One's isolette, read to her, sing to her, talk to her, pump, have lunch, change her diaper, and when she got stronger, I was able to do 'kangaroo care' with her and just hold her! Later on I was able to nurse her. I really valued those special bonding times with her.

Leaving the NICU at night was always hard for me. Having to take the subway and bus at night and leave my baby at the hospital seemed so unjust to me. Plus, I always worried that something might happen while I was away from the NICU.  I used to call the NICU a few times a night to check in on Little One. Her primary nurses were so amazing and the nurses on duty were fabulous too. They'd give me the updates on Little One regardless of whether I was calling in at 11pm or at 2am. Yes, I actually used to call them during those hours just to have some reassurance.

It was a long 72 days and certainly not without its ups and downs. I won't lie when I say it was the scariest time of my life.

A very big and heartfelt thanks goes out to Mount Sinai Hospital, the doctors, nurses, primary nurses, RT, NICU staff, Marianne Bracht, Tammy the lactation consultant, the Linden Fund, the Perinatal Parents, and all of our NICU family. I say family, because that is what they were to us. Thank you so much! We are forever indebted to all of you for the support you have given us.

Some things you can do to offer support to parents of preemies:

  • It may sound trivial, but the little things really do help.  Things like bringing over a freezer meal for the family is really helpful. Parents of preemies have so much on their minds when their babies are in the NICU, that feeding themselves isn't always high on their list of priorities. It's a stressful and busy time commuting to and from the  hospital everyday.  Wholesome freezer meals do come in handy, especially if NICU parents have other children at home.
  • Family and friends working as a team and even helping take care of the other children in the house (if the NICU parents have kids at home). 
  • Visit the family in the hospital or meet for lunch.  Though visitation is limited due to wanting to limit the exposure to illnesses for the babies in the NICU, a friendly face can make a preemie parent's day a great one sometimes. On the other hand, sometimes if things are too overwhelming (depending on what's going on), visits aren't always the greatest. Just offering to be there in case the parents need you and letting them know that you're there is good. A lunch date is a great way to break up all those long hours spent in the NICU.
  • Offering support in the form of 'being there' for the family is welcomed, and offering support in the form of donation to the the hospital is as well. Friends of ours have been donating monthly to Mount Sinai Hospital since the birth of Little One. We donate monthly as well.
  • A friend and I have organized a benefit concert where all proceeds will be going to the Perinatal Parents Association at Mount Sinai Hospital.  I certainly would not have survived Little One's first 72 days of life without their help and support. I am forever indebted and putting on this event is just a little way of saying thank you and giving back.  I really want to do for others what was done for me. As a parent of a NICU baby, I know what it's like to have a baby in the NICU. Knowing I had the support of the Perinatal Parents Association really did help me in those scary first few days, weeks, and months.
I am participating in a Preemie Awareness Blog Hop. We're hoping to spread awareness for Prematurity Awareness Month and provide support for other parents of preemies. For more stories of life in the NICU and life with preemies, please stop by and visit these other preemie mama bloggers that have shared their story as well:

1) Frugal Momeh: Prematurity Awareness - Keira's Story  
2) Tales of Mommyhood: Prematurity Awareness - Julien 
3) Journeys of the Zoo: Prematurity Awareness - Born at 30 Weeks, The Zoo's NICU story
4) Tales of the Mommyhood, Guest Post: Prematurity Awareness - Parenting with Heart
5) Number Crunching Momma: Prematurity Awareness - Being a Parent of a Preemie
6) Ask Mama MOE: Prematurity Awareness - What It's Like to Have Preemies
7) No Holding Back: Prematurity Awareness: "Tiny" and Kathryn's Story

For more information on prematurity awareness, visit The March of Dimes Prematurity Campaign.


Deborah Coombs said...

Oh Christine. This really brought tears to my eyes. We were only in the Sinai NICU for 15 days, but your post brought back so many memories of pumping through the night, and calling in to the NICU each time to get his stats. M had low blood sugar (born at 37 weeks, 5lbs 2oz) and his numbers were tracked constantly and caused me no end of worry. It is so unbelievably hard to leave your delicate baby in someone else's care. I really felt for those parents who could only come on weekends because they lived and worked far from Toronto.

Thankfully the Sinai team is AMAZING! I love that you are doing the concert fundraiser - best of luck!!

Journeys of The Zoo said...

I remember everything that you write about.

Unfortunately, the first time I got to hold my son Alexander was also the last.

It's hard to explain what we went through. I try not to as it is an unbelieveably difficult time. I will never forget.

Thanks for participating in the hop.

Besos, Sarah
Zookeeper at Journeys of The Zoo
Blogging about Family Life, Loss and Reviews with a side of Humour

mamawee said...

thanks for sharing your story with us... I remember the first time I heard the term "liquid gold" I really didn't know what they meant until I was able to get to the nicu and see my boy

Bonnie Way said...

This story made me cry. I have two girls and I griped that when I had my second, the nurses insisted on scrubbing her off with a towel before letting me hold her. I had to wait a few minutes, rather than a few days or weeks, to hold her. Thanks for sharing and I'm so glad your daughter is healthy now. :)

Cathy said...

My heart goes out to every one that has had to deal with a premature baby.
I did not have that issue. My babies died at full term. A son then a few years later a daughter. Back then you where not allowed to hold them or even see them. Still to this day my heart aches for them.
Hold your child tight and love them. Then let them bloom and grow to be fantastic Canadians.

NPC23 said...

Made me cry! I couldn't imagine having to go through that and how any one must feel. Thanks for sharing this amazing story and for linking to other amazing ladies! :D

Little miss Kate said...

Even though every preemies story is unique and special there are so many similarities. The pumping because it is the only thing you could do to help you baby at the time.
The terror of the monitors going off, and then that same terror when you go home without the monitors because you are used to the peace of mind the give you.
Thanks for sharing with us.

Positively Pampered Patty said...

She was so tiny! I can't imagine it and not being able to hold your Little one right away. Friends of mine just had a baby boy a few days ago at 32 weeks, he is so little but so far things are okay. Thanks for sharing a little more about it. xoxo

~ The Country Mouse ~ said...

And, look at LO today, what an amazing little girl who was a fighter right from the get-go. Not to be forgotten her amazing mommy who was so faithful. Thank you for sharing your touching story. xox

Christine McN said...

I had no idea your little one was in the NICU too! I was one of those parents who lived far from Toronto -- 6 hrs from Toronto, but I had family who lived about 1 hr commute in traffic. I had to public transit it and Hubby could only make it down to TO once every two weekends (if even!).

Amazing how the human spirit can endure something so taxing and trying --mentally, physically, and emotionally.

Just happy all turned out well in the end :)

Christine McN said...

Reading your post brought tears to my eyes. Sending you hugs! Some of my friends who have had preemies have decided that now that their babies are healthy and have met all their milestones and are no longer using "corrected" age, they are going to not even think about the past and let the past be just that...the past.

For me, sometimes I 'forget' temporarily, but every November I am constantly reminded of those early (and scary) days.

Christine McN said...

Yes, liquid gold indeed! I had absolutely no idea just HOW important it was to be able to give Little One that gift. I was determined to be able to do that for her.

Julia M. C-G said...

My friend! Even though we became friends after our preemie moments, this is a bond we as preemie mamas share. The fear, the stress, the crazy hours, everything. We get it because we lived it. Thank you for writing again about your precious LO. She is a rockstar with a rockstar mama!

merinz said...

That was such a traumatic time for you all - I remember it well as we read your blog entries and wondered how you were faring. You were so brave. And being so far from home too and separated much of the time from your husband.

Little One is a treasure!

And now we have two new Grandchildren to look forward to - one to be born in Bahrain in January - we will be there! And another due later in the year. Will bring the total up to six!

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City girl moves to the country, falls in love, and marries a farmer. She tries to incorporate her city ways with her new country lifestyle and blogs to keep in touch with friends, family & students who live far, far away :) Can this city girl go country? Watch as she learns all sorts of exciting things about life on the farm and in a small rural community. *UPDATE* We are now parents! Our baby girl was born on Nov. 11, 2008 (at 28 weeks gestation- 12 weeks premature, but she's quite the trooper)!!!
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