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!