NICU and Preemie Parenting (By Anshu Basnyat, LCPC)

    As a parent of having two premature babies, one born at 31 weeks and the other at 25 weeks (micro preemie actually), I am no stranger to the Neonatal Intensive Care Unit (NICU).  Our first born had to be delivered early due to pregnancy complications (preeclampsia) and spent about six weeks there seven years ago in 2005.  Shortly after we arrived in Sydney, Australia in 2009 I experienced another complicated pregnancy (again, preeclampsia) and our daughter had to be delivered early on Easter Day. She spent 5 months in the NICU and endured five major surgeries during that time.  At day four of her NICU stay, the doctors had lost hope that she would make it and we were encouraged to call our local priest to do last rite rituals.
   
     Having been in Sydney just for two months, we had not even visited a Hindu temple, let alone had a family priest.  The hospital staff called one from their directory and this kind, gentle, Hindu priest drove an hour from his home in the middle of the night to perform these last rite rituals for our daughter.  He told us that she WILL be okay with such confidence that I had to believe him.  He was so right and after some time, we visited him at his temple to express our gratitude personally.  He was so delighted!

     Spiritually, I take a very eclectic approach and draw from many faiths. Hence, I truly believe that the words and actions of this Hindu priest coupled with her Easter birthday played a major role in our micro preemie’s survival.  However, I also believe that both my husband and I must have some sort of inner resilience to cope with such dire circumstances.  Other people’s reactions to how we managed confirmed this hunch. Thought I share some of the strategies we used in hopes that this will resonate with many parents who are going through these difficult circumstances right now.

5 Issues and Strategies in Preemie Parenting
1.    The Hope.  From moments before and after the preemie is born, doctors of every specialty in existence in the medical field will come and talk to you about the risks associated with having this baby.  Please understand that this does not come from a bad place and is not meant to instill fear in you, even though it does.  It is intended for the parents to consider all possible outcomes when making their decisions.  And these will be HARD decisions to make! Parents will be required to make decisions anywhere ranging from the side effects of medications to whether you want your baby resuscitated or not.  I know, this latter one came as a huge surprise to us in our daughter’s case.  I suggest that you just listen to what the physicians have to say and ask as many questions as you like and as many times as you like. If you don’t understand the answer, ask the question in a different way.  Even if you are heavily drugged out. Try to stay focused and of course have your partner there too so you don’t miss anything.

Before my daughter’s birth, one of the first doctors was a neonatologist who was doing some research on preemie and their breathing. She shared a very long list of things that could go wrong with our baby.  The outcomes ranged from attention problems to brain damage and cerebral palsy. Did I mention that I was heavily drugged out at the time? I must have asked many good questions because I remember her saying something like “wow, you are asking very good questions even though we have injected you with every possible drug at our disposal.”  Few days later when I was more lucid, I met her again in the NICU, but I couldn’t remember her face. At this time, she reminded me again how surprised she was with my “good questions.”  The take home message is to listen, ask questions, but DO NOT ever lose Hope.  For those skeptics who talk about “false hope” to which I say: “There is no such thing as false hope. You either have hope or you don’t. You CHOOSE.”


2.    The Milk Supply.  After you hear all the bad things that could happen to your baby from the doctors, the lactation consultants start rolling in to share how breastfeeding will make things better for the baby.  It is well known fact that breastfeeding is good for the baby, especially for preemies.  In particular, the colostrum, which is the first drops of yellowish milk when the mother starts expressing, is the most beneficial for the preemie.  The colostrum has many ingredients such as vitamins and proteins that serve as antibodies to diseases.  As a result, mothers of a preemie baby tend to put extreme pressure on themselves to produce the milk.  And there begins the vicious cycle.

The mother’s milk supply becomes suppressed because of the extreme distress due to the circumstances and the baby may not be able to suck to stimulate the milk supply.  There are many herbal remedies, such as fenugreek, to stimulate milk production.  Talking with a lactation consultant is a good starting point if your milk production is low.  Despite all of your loving efforts and hard work, your baby many not be able to tolerate your milk. Although many believe a baby cannot be “allergic” to the mother’s milk, but who is to say that the baby could not tolerate due to the interactions of all the medications being pumped into that little, fragile body? This happened to our daughter. Thankfully, she was able to take in all of the colostrum, but as time went on with surgeries and medicines being given, she could no longer tolerate my milk and had to start her on formula.  All of which was done through a feeding tube. As a mother who is a huge believer in breastfeeding, this was devastating to hear.  It felt like all of my hard work pumping at home day and night while my baby was in the NICU and pumping at the hospital went to waste.  

Eventually, I had to come to terms with the fact that this was out of my control and luckily she was able to get at least the colostrum.  In Australia, if my memory serves me right (was under the influence of a cocktail of medications) you can donate your milk to babies who are unable to get their mother’s milk for various reasons.  This is did help me feel better.

3.    The Emotional Roller Coaster.  It will be an emotional roller coaster.  You may visit your baby in the morning and everything seems fine, but when you make the evening visit, you may be hearing that your baby may need some kind of surgery.  This happened numerous times for us.  Our daughter’s five months NICU stay included five major surgeries where sometimes she had to be transferred to another hospital for the procedures. This is a very scary thing to go through. When your baby is that tiny and vulnerable, the parents will be an emotional mess.  What worked for us was to have a mindset that anything is possible so just to take it one day at a time and deal with whatever may come our way little by little. 

4.     The Good Enough Mother.  The second person who will be most affected when a preemie baby is in the NICU is naturally the mother.  I will never forget when the lactation consultant asked me if I knew about “The Good Enough Mother” concept. I said No, but I sure knew about “The Supermom,” and “The Perfect Mother” notions.  She gently told me that I need to adopt this new way of thinking about motherhood.  Knowing from my pre-move research that Australians have a good reputation for knowing how to be “happy” or “satisfied” with their lives, I decided to heed this advice.  In all honesty, this did take some time to fully understand and practice, but this way of thinking really alleviated the stress and reduced the guilt thousand fold.  This of course, fits well with cognitive-behavioral theories on anxiety. The more pressure you put on yourself, the more likely it will be counterproductive.  I am a better and happier mom because of “The Good Enough Mother” guiding principle.  

5.    The Social Isolation.  When your baby is in the NICU, it is so easy to become socially isolated because your whole life revolves around your NICU visits, talking to the doctors and nurses, pumping milk, researching about the conditions your baby is dealing with, experiencing all kinds of emotions, etc.  It becomes exhausting and the mood is not optimal for social gatherings.  However, I cannot stress enough how important this is to your and the baby’s health.  Social isolation is a major risk factor when it comes to depression, which only leads to a downward spiral.  Parents with preemies in the NICU cannot afford to get depressed for extended period of times because this will directly impact how you care for your baby.  Therefore, it is paramount that parents make every effort to surround themselves with supportive people in their lives and try to enjoy the moment.  This means to be with people even when they do not understand what you are going through.  Connecting with people and simply laughing at times will go a long way in coping with these difficult circumstances. 

Do this without any guilt because in some cultures there seems to be an unspoken rule that you should be sad all the time during such situations.  People may judge you for being social, but that is okay too.  That comes from a place of ignorance so do not let this get to you.  When I gave birth to our micro preemie only after being in Australia for two months, our social network was limited.  We tapped into whatever limited resources we had at our fingertips and made the best of it.  I highly encourage you to reach to your social network (real or electronic) and make some time to laugh a little!