Thursday, July 19, 2012

Eventually Will Come Someday
Advice from a NICU Mom

My name is Ashley and my babies Jack and Emry spent the first 64 days of their lives fighting harder then most of us will in a lifetime…and won.  My husband Justin and I welcomed our beautiful twins into the world 3 months early.  Jack and Emry were 26 weeks gestation and weighed 2lbs 2 oz and 1lb 12 oz respectively.  They came home together at 36 weeks and continue to thrive.  This was the most difficult time of our lives but also the most wonderful.  I believe I survived as a NICU mom and I am now able to reflect back on the NICU experience as a positive and even special part of our family story because of the following standards I chose to live by.

  1. Do it your way.  The following advice worked for my family, our story.  It may not work for you. You may decide to live by it completely, alter it as appropriate or throw out this list all together.  All ways are the right way.  You are the parent and you are in charge.
  2. Be present. I cannot stress this enough.  You are your child’s advocate.  You are the only person that can provide them consistency in a sea of changing healthcare staff.  Just like any new parent you will grow to know what they need, what works and what doesn’t.  Even with the best hospital care you need to be there to make sure nothing is missed and that your baby’s caregivers are up to date with your babies past and present plan.  It is the reality that changing shifts inherently come with mistakes and you are the best equipped to catch them. 
  3. Don’t be afraid to leave.  Although it is so important to be present with your baby as much as humanly possible, you are going to have to leave them.  This is the hardest and most unnatural part of the NICU experience but there is no getting around it.  I spent half of my first nights away sobbing guiltily that I wasn’t there and the other half panicking about what could happen while I was gone.  After many nights I realized I couldn’t live an extended amount of time like this.  Obviously, I did not follow this rule to perfection but tried to trust that my babies were in the second best set of hands while I was gone.  NICU staff are individuals that have chosen a career that naturally recruits the most compassionate and caring people. You must accept that they know what they are doing and have your child’s best interest in mind while you are away.
  4. Establish rules at the beginning and stick to them.  For example, Justin and I decided that the babies grandparents could hold Jack and Emry once they were out of the isolettes and into cribs.  Remaining family would just have to wait until the babies were home.  Sure, it was hard to tell my mother she would have to wait to hold her first grandchildren but we decided that limiting potential germs at the beginning was an important parenting decision that outweighed that delayed gratification. Boundaries are important to your mental health and if you make these rules known at the beginning to your loved ones it is one less thing you will need to continually address throughout your NICU stay.
  5. Kangaroo Care.  Do it.  Make it a part of your daily routine but also be open to adapt depending on how your baby is doing that day.  Make time to spend at least one hour each session to decreased transfer stress. There are a few things that I truly believe helped to get my babies home at 36 weeks and this is one of them.
  6. Pump.  I hated pumping.  Getting up in the middle of the night and being attached to a pump every 3 hours was torturous. However, like Kangaroo Care I believe that supplying my babies with breast milk was key to their success.  When you want to quit go another 24 hours before you make that decision to allow time to think it through. This kept me going during multiple moments of weakness. Know that you would be waking every 3 hours if your baby was home and know that you are providing them something that nobody else can.  It is one of the best things you can do as a mom for your baby. 
  7. Breastfeed.  Again, this is something that you, as their mom, can uniquely give to your baby.  Before the baby is cleared to breastfeed attempt non nutritive suckling as soon as you are able.  When they are ready highly consider trying a nipple shield.  Remember that your baby’s latch is weaker then a term baby. The shield will allow you to breastfeed more successfully and earlier in development by providing structure to the nipple.  This allows the baby to maintain a latch when they are resting between sucks.  My twins began to feed between 32 and 33 weeks.  They could not even latch without a shield but on the first try with it they were successfully transferring milk.  Recent studies have shown that using a shield will not hinder later shieldless breastfeeding. I found this to be true with my own experience.
  8. Get involved. Change diapers, take temperatures, give sponge baths, swab mouths with breast milk, clean eyes, position, dress.  Do anything you can achieve safely each and every time.  Not only will it provide you with a sense of purpose but it will also allow you to bond with your baby and be more confident when it is time for them to come home.  You are the parent, this is your job, it may not seem like it but you do it best.
  9. Keep the energy positive.  When our twins were born Justin and I decided that we would be very selective on who visited the babies and who we would send pictures/detailed updates to.  There are individuals that will see your baby as the miracles that they are and there are those that will see the tubes and lines keeping them alive.  It is not your job to reassure others about “how great they are doing” so don’t spend your energy doing it.  Do a mental list of your acquaintances and as soon as you come to a person that gives you that uncomfortable feeling draw your “inner circle line” there.  Be honest with your family if you don’t want their pictures forwarded to your mom’s cousins, sister-in-laws, friend. Keep the outer circle updated in a general manner.  Don’t feel guilty. This is just the start of you protecting your child. 
  10. Journal/scrapbook/take pictures.  You many initially think that you many not want to remember your child’s stay in the NICU or reflect on a time that they were so sick. However, when they are safe and sound at home you will look back on those memories with such an amazing sense of pride.  What your child and family has overcome is miraculous and you will treasure those early memories. I structured my journal to be given to the babies when they are old enough (staying away from the scary details and focusing on the pride I had as a new mom)
  11. Celebrate!  Don’t dwell that your baby isn’t home for Mother’s Day or that they spent their two month milestone at the NICU or that you are not pregnant for your baby shower.  Every day your child spends in the NICU is one day closer to them coming home.  Don’t get me wrong, it is normal to mourn the pregnancy, birth and post birth life you dreamed of; I still do at times.  Just remember to also celebrate the daily miracles.  Find the positives.  You are getting to know your baby earlier then most parents.  You are able to see how strong they are and have that story to tell them when they are older.  Treasure that you are able to spend those milestones and holidays with them.  You have even more to celebrate then most parents.  Your baby is able to face the uncertain days ahead because they are alive. 
  12. On a difficult day read, “How Preemie Moms are Chosen” by Erma Bombeck.  Have tissue nearby.  Accept that there will be difficult days.  It is ok to feel sad, scared and defeated.  Try to look at the big picture when these small details become overwhelming.  Your baby may have had to go back on CPAP but at their very weakest they overcame the ventilator.  Even then know that you don’t have to have your chin up for anyone.  You have nothing to prove.
  13. Take care of yourself and your relationship.  When your baby comes home you want to be at your best both mentally and physically. Go on a date the night before your baby discharges and celebrate the ending of your NICU era.
  14. Don’t be afraid to advocate for your child.  If you don’t like a member of the staff say so and explain why.  (This may benefit future NICU parents)  If you have a question about care ask.  I am not suggesting you be the wicked witch of the NICU, in fact I would advise highly against that.  Your child is in highly trained and qualified hands and lets be honest, we are far from neonatologists (words cannot express how eternally grateful I am for the care my babies received.)  That being said if something is bothering you don’t hold it in.  You don’t need to add stress to an inherently stressful situation.
  15. Learn from it.  Accept that there can be positives that come from your NICU experience.  I came out of my 64 days as a NICU mom a more positive, accepting and grateful person.  I don’t take a day I have with my babies for granted.  There is no right experience, there is your experience.  I didn’t hold my children until 6 days after they were born but I held them 3 months before most moms.  I didn’t see them come into the world but I was awarded the gift of witnessing them grow from fragile preemies into thriving 36 weekers.  I observed a strength in them I would have never known about had they been born full term.  I am reminded everyday that I am blessed as I look into the eyes of my miracles.

I dont know if this list will ever "get out there" (I originally wrote it as a therapeutic activity while in the NICU and in the few weeks following) but if it does I hope it helps parents going through their own NICU story.  Please add to or comment on the list as you see fit so we as a community can make it even better for future NICU families!


  1. This is Southern Frog from WTE Preemie forum.
    Good read. I started mine in the NICU too :)
    Link again..
    I will be adding you too it :)

    We kinna did 9&10 together.. sort off. We started a FB group for him but my sister and mother were admins and would remove any unpositive comments. It is now our scrapbook.
    Although 2yrs later I can't look at many of his first days pictures... they just make me sad. The worry and stress all comes back. When I see them I just think about how they were taken because we were afraid that they would be all we would have.. but some others I can :) Some pics will always be hard.
    Good post though :)

  2. I gave birth to twin girls July 9th born at 26 weeks. Baby A- Jenni Weigh 1 pd 14 oz and Baby B- Julie weigh 1 pd and 10 oz. This is my second pregnancy that ended before my 3rd trimester. My son was a 27 weaker. I am more angry this time around because I do not feel as though I have even bonded with them. I am pumping but have not hold them. Both babies are ultra-sensitive to touch and no one has really communicated to me when I'll be able to hold them. I have tried to be thankful that they are fighting but I am so upset. All I can do is take it a day at a time but this is just breaking my heart.

    1. You have every right to be upset. There is no rule that you have to be graceful everyday. There is nothing I can say to make your NICU story any better except that as you know from your first experience you will have those moments...they just are not in the same way or with the same timing that we were promised as little girls...but they will be just as special. Don't let the NICU take away from the reality that you are a mom to two amazing and strong little ones. There will be bad days and you will get through them...your girls got there strength somewhere :)

  3. Thanks Ashley, this is really helpful.

  4. My advice:
    1. Forgive yourself. There is nothing that you did that made your child come into this world early. It wasn't your fault. For others who blame you for this happening, forgive them. They will never understand the pain of seeing their child in the hospital, teetering on the brink of death.
    2. Listen to the doctors, but trust your instincts. There were so many times when the doctors told us what to expect of our child because test "A" showed something. They were frequently wrong. Doctors know a lot about medicine, but ultimately, they don't know everything. After a while, I started to make a list of things that the doctors were wrong about to reassure myself that my child was OK. It turns out that they were wrong about a lot of things (but that was good for us, because my child is doing great!).
    3. Don't sweat the small stuff. The one good thing about having a child in the NICU is that I've learned not to care about the small stuff. If someone had a melt down about something petty, it didn't bother me because I had bigger fish to fry. Having a child in the NICU made you realize what's truly important in life. And if the laundry didn't get done or if e-mails didn't get answered, it didn't matter. My child and my family mattered.
    4. Reach out to other Moms who have had a premature child or a child in the NICU. Having a child in the NICU can be a very isolating experience. You may be the only one in your family or among your friends to have had this experience. When you learn of someone close to you (at work or at school) who's had a child in the NICU, reach out to them. Let them know that you're there for them. You know the ups and downs of what can happen and help them through this journey.

    1. GREAT additions!!!!! I have been getting great feedback from past and current NICU moms...we are already at almost 800 views from all over the world.

      I agree that forgiving yourself is important. It is probably the number one thing I struggled with while in the NICU (and even now at times). I never really even felt sorry for myself because I felt that it was my fault that they babies had come early. Taking the blame made every test and procedure so much harder....those were always the worst days. I am lucky that I have an amazing husband and family that constantly reminded me it wasn't my fault (although no matter how many times they said it you really have to come to that realization on your own.)

      I think #3 is a gift that we are given for going through the NICU experience. :)

      the NICU IS a lonely place...I didn't even talk to other moms on the unit until mid way through the twins being there and I really regret that. I was just so caught up in my own little world. You don't need someone to tell you it WILL be ok, you need someone to tell you that it CAN be ok. Talking to other NICU moms has been an amazing gift...even after we have graduated.

    2. Very nice article... I related most to reading the NICU is a lonely place... it is. I feel like I had to be taught to be a mom and it felt lonely... thanks for this list. Very nice. We survived also, my son was there 7 months and had several surgeries. He will be 5 this summer <3 ~~ Michelle

  5. Thank you! What an amazing article, I will be sharing with my triplet mummy friends here in Australia. I am 31 weeks with triplets and have this same attitude so hopefully I will survive NICU just like you - specially since reading this x

  6. Grandma of a Nicu angel - i fell in love at first sight of 2lb 14oz maci. Drs said my daughter would never carry past 27 and she made it into her 29th wk which hey she beat those odds !! Mommy and baby were in dif hospitals for the longest 3 days !! Maci is now 39wks - and still the nicu princess !! Oh shes goin home soon is the hardest line we have heard. Reading all your posts makes me cry !! One day macis good one day shes not not even really days - i have learned that a nicu stay is min to min not day to day !! Reading that hey they do come home is a blessing to me !! You all plz keep posting for someone to read - you may call it a new post but to ones like me its proof there goin to be a home day !! Thank you so much !!

  7. Wow all you said is so true ! I read all these posts and see that there is an end to our nicu stay and a beginning to a wonder life

  8. Hi Ashley,
    I'm a NICU mom of twins born at 28w5days. We are on day 59 of life and probably still have a while to go. Your advice on this post couldn't be any more spot on. So much of what you suggest resonated with us. It's reassuring and comforting to know that other NICU parents are experiencing similar emotions & situations. Glad your babies are out and healthy, can't wait for our someday to arrive.