“I’ve gone to look for myself. If I should return before I get back, keep me here.” (Anonymous)
Sound familiar? How many times in the NICU have you felt just as mixed-up and confused as this quote? You don’t know if you are coming or going, walking left or right, back or forth. Many times it is a combination of them all and you feel pulled in a thousand directions. After leaving the NICU, for many parents, this feeling of confusion continues, albeit manifesting itself in different ways.
This article will highlight some of the common themes parents of premature and/or sick babies face after they have left the NICU as well as some tips on how to cope with each one. Bear in mind that not every single issue will be addressed because just like every baby born prematurely is different (how many times have you heard that?), every parent and the manner in which they cope is just as different.
1) NICU Separation Anxiety
After spending several weeks/months in the NICU, “D-Day” (Discharge Day) is finally here and you can hardly contain your excitement. Sitting alongside your feelings of euphoria though is also a very real feeling of dread. You are asking yourself questions like, ‘Can I really take care of this baby?’ Do I know what I am doing?’ ‘What if something happens?’ etc. After being surrounded by the safety and expert knowledge/skills of the NICU doctors and nurses in hospital, you feel utterly lost and afraid that you now have your child on your own.
Tip to Remember:
The key thing to remember is to trust yourself. During your time in the NICU, you have had an in-depth crash course in how to take care of your child. From the moment you stepped into the NICU, you were learning and very quickly you became familiar with the beeps of the monitors. Eventually you knew when to be concerned and when not to be and most importantly, you learned to look at your baby, for this often told you more than any monitor could. You provided that link of continuity between the advice and care of the NICU nurses, doctors and specialists and your own understanding of your child. You had the full picture. Now that you are home, try to couple all of the knowledge you have acquired with your own internal parental instinct and innate knowledge of your baby. You will know what, when and how to care your little one and you will continue to have the medical support of your hospital or doctor, when needed. Remember again: Trust yourself.
2) Medical Avalanche
Even though you are at home, you are still intimately connected with the medical profession. Many, many babies continue to have ongoing medical issues that require constant monitoring. These range from apnea, feeding issues to breathing and cognitive issues. Many babies go home with oxygen, apnea monitors, NG and/or peg tubes, etc. Almost all come home on numerous medications. Home nurses become your live-in guests. Coupled with this are the ever frequent (often weekly) hospital/clinic visits. In many ways, it feels like you and your baby are still in the hospital. Despite you having the support of pediatric home nurses, this does not stop the fact that you feel completely overwhelmed and snowed under by the medical assistance your child still requires. It is not a pleasant feeling.
Tip to Remember:
To steal the concept from the famous Serenity Prayer – Manage the things you can, let go of the things you can’t – and know the difference. Let the health professionals do their job with your little one (s) and you do your job as mummy/daddy. I am not implying that you don’t remain vigilant regarding your baby’s care – to the contrary – but I’m just saying do not lose sight of your primary and most important role – that of loving parents. So many parents continue to ‘look at the monitors’ even when we come home, rather than looking at and playing with our babies. When we stop this very understandable practice, it is then that we begin to truly start seeing and really parenting our little ones.
3) Curiosity and Cluelessness of Loved Ones and Strangers This is a hard one particularly because it has the potential to offend loved ones; nevertheless it is an issue to be mentioned. So many well-meaning and well-intentioned family and friends can say the most incredibly unhelpful and sometimes hurtful things. This is highlighted even more if your child has ongoing medical issue, has special needs, or if you have lost one or more of your babies. Phrases such as: “I know what you’re going through” as they promptly proceed to tell you about someone who was sick with the flu and hospitalized for a couple of weeks, or recount the story of when their grandparent died, or how their child was a picky eater too, etc. These scenarios couldn’t be more different to your life in the NICU and afterwards and you wish that they wouldn’t say anything at all. Other comments like, “Look, that baby has glasses”, Why does he have a tube in his nose – can’t he eat normally? Or “Wow, he/she is so tiny – are they really 2 years old?’ Or “He/She talks/looks funny – what’s wrong with her/him?’ and the list goes on and on. Frequently, friends and family have a glazed over look when you begin to explain your child’s condition and challenges and/or give you the impression that they are silently thinking that you are exaggerating your child’s issues and simply being an overprotective parent.
Tip to Remember: They don’t know and probably never will. No one can truly understand what you have and are going through except those people who have walked in same or similar shoes. If and when you are ready, get in touch with support groups or if this setting isn’t comfortable for you, another option would be to tap into the one or handful of friendships you established while in NICU. In this company, there really isn’t a need to explain – this ‘knowingness’ that you share can provide a great deal of comfort and clarity. Another tool is to kindly but firmly let your loved ones know that they are not being helpful and try to explain what would be most beneficial to you. Most will appreciate this. As for the strangers, at this point, it may not be worth your energy to address them. There will be plenty of time for this later.
4) Relationship Disconnect
This is a sensitive but key area to discuss. Having a child born early or sick is physically, emotionally, spiritually and financially exhausting from day one and it often continues once you are home. This exhaustion – if not discussed and dealt with in a timely manner – can lead to separation and divorce for many couples or the very least, a major point of contention in the relationship that creates a huge wedge. One major factor in all of this is the significant amount of physical and emotional time and energy most parents spend on the baby while neglecting each other. “Recent research has shown that anxiety levels in mothers of premature babies are higher than mothers of term babies, at both 14 days and 14 months after delivery. [This leads] many parents, especially mothers [at a higher risk of experiencing] depression, anxiety and post-natal stress disorder (PTSD). Parents of preemies [also] have….feelings of fear, helplessness, grief and loss of the ‘perfect pregnancy’, even after their baby is out of danger and [is] thriving.”(Bliss, UK). In addition, mothers and fathers tend to deal with the fact that their child is born early, sick, etc in different ways. For the mother, they often feel “incomplete” as a woman, wife, mother, etc. – Many feel that the one thing that is supposed to happen naturally for women, they can’t seem to do. Mothers grieve the loss of the remainder of their pregnancy or the loss of a “normal” pregnancy/child, etc. This can be especially apparent if your baby dies as can be the case with twins, triplets, as well as single babies. Fathers also go through a range of emotions and hurt just as deeply, but often don’t outwardly express these feelings as many of them feel that they must take on the ‘strong, supporting’ role.
Tip to Remember:
This time in your lives can either be a stepping stone or a stumbling block in your relationship. The key thing to remember is that it will very much depend on how you approach the situation. It is also crucial to remember that you both have lived and are living this experience together and that you are both on the same team. Nobody else, not your parents, siblings, friends, etc – can truly know or understand the minute-by-minute life in the NICU or the persistent concerns and tasks you have once coming home. You have lived it, felt it, wept, laughed, worried, etc in waves – there is no need for explanations. Capitalize on this wealth of ‘togetherness’ that only the two of you have. It can often be one of your greatest strengths as you go through the daily routines of after-NICU life.
©2009 Gigi Khonyongwa-Fernandez
parents of premature babies after NICU?