★ things not to say to a preemie mum ★

As mentioned in on of my previous posts, I am a caffeinatedmum of two miracles. My twins were born 26 weeks and 3 days into my pregnancy, when they flew me in the hospital and wheeled me into an operating room, cut them from me precisely and swiftly to save them. It was nothing like what I expected when I was expecting!

I learned a lot from that experience, specific medical terms from CPAP to ROP and how to uncover hope in the middle of traumatic circumstances.

I also learned that people say some pretty outrageous stuff to you when you deliver your babies 95 days before your due date. I mean, you’d think that people would say comforting things but no.

They say things like “At least you get to sleep through the night”.

After spending 122 days in the NICU, I heard my fair share of such remarks. In my heart I know that most people are well meaning and that they just don’t know what to say. So here is a helpful list of the things you definitely should NOT say to the mum of a baby/ babies in the NICU and the one thing that you absolutely should.★

1) “At least you get to sleep through the night!” – This one always surprises me because who thinks that a mother with a child/ children in the hospital is sleeping well? In reality, nighttime was the worst for me, especially at the beginning, when I had to be away from my babies every single night during the time they were the most critically ill.

Plus, most preemie mums have to pump milk just like they would for a newborn. So that meant that every two hours throughout the night an alarm would sound and I would strap myself to a breast pump. Sleeping through the night was not “a thing.” (Actually, it’s still not a thing. I am still highly caffeinated!!)

2) “Aren’t you worried that all of those heavy medications are going to mess them up?” – Um, well no, I wasn’t until you said that. I was mostly focused on how they were, you know, keeping them alive. But thank you for that. That was super comforting and did not at all give me yet another thing to fret about while my babies are extremely sick.

3) “You’re being overprotective, kids need to be exposed to germs!” – Actually, children with compromised immune systems should definitely not be exposed to germs. In fact, they are basically the exact group of people who should stay away from germs. Like, scientifically and all that.

But I will cop to being overprotective. There is an incredibly difficult transition from the NICU to everyday life. I spent four months watching my daughters struggle to live and took them home with an home apnea monitor and the warning to be vigilant about keeping her away from possible illnesses. For a long time my life was entirely consumed with keeping them alive and it is very hard to shift out of that mentality.

4) “You’re so lucky that you didn’t have to deal with the 3rd trimester, especially with twins!” Missing out on the 3rd trimester is kind of what landed us in this whole mess. So I’m not feeling super grateful for that particular scenario. I’d give anything for the peace of mind of knowing that my babies were safe inside my womb instead of in an isolette on a ventilator.

5) “You don’t know if they are going to be normal! There will be severe development delays! ” –Yes & yes, while it is true that babies born very early have a high risk for developmental disabilities or delays, there is no way of knowing what might happen. But stating a mother that their babies are not going to be normal is an insensitive statement, this is better left unsaid. I think we can all agree that even if issues did arise, none of us would ever love our children any less.

6) “I could never do that” – For a long time this phrase made me feel angry and I wanted to bite back a retort, “Well, I don’t really have a choice, do I?” But time and hindsight has softened me a bit. I think it is born out of a deep-rooted fear, one that whispers to us that we aren’t strong enough to handle the hard things. From the outside looking in I am sure it does look like something that we could never handle but on the inside, in the living it out, you learn that you can. And that you will. Because your child needs you.★

The thing that I appreciated the most was when people simply said, “I am sorry that you are going through this. I found comfort in an acknowledgement that this situation was unbelievably hard. It also freed me from having to carry the emotional weight of tough conversations when I was already barely keeping it together.

And when you just aren’t sure what to say, a simple “I’m thinking of you will always suffice. Sometimes it just helps to be remembered.

★ preemie life ★

It is difficult to explain the journey with preemies, the emotional roller coaster ride over months. One of my reasons for blogging is that I would like people to better understand this journey.  However with regards to this topic it is most probably more healing for me as it is educating the rest of the world ;)!

However, I can’t help but still wish for the original goal. If I would have to sum it up in a list of things that I wish people knew about prematurity and being a preemie mum, these are my big ones.★

★ premature babies are not just smaller versions of full-term babies

premature babies are born sick. By referring to where they stay as the “NICU” as one word, it seems that many people forget that the last three letters stay for Intensive Care Unit. Prematurity, regardless of gestation, presents serious long and short term health and development concerns.

Every premature baby’s storys different★

your’s sister’s best friend’s cousin may have had a 22 week preemie who is now an Olymic athelete…or maybe she is “just fine” now, but does not predict the outcome of any other preemie. Preemie mums concerns and fears for their childrens immediate and longterm are real. Pondering on those concerns will not change anything, but if you just brush your concerns under the rug, you are not  being honest, or do not understand the risks of children born too early.

There is nothing magical about two★

being born too soon is not something that is outgrown. Medically speaking, once a child past their due date, are a “former preemie”. However that does not mean the baby has caught up and many do not catch up at two or ever. Most of the time it takes up to six years or even forever!

Washing your hands is really easy★

just do it! It is the most effective way to prevent the spread of illness and disease.

I am sensitive★

the emotional toll of prematurity is significant. You may mean no harm when you are complaining about your last weeks of full-term pregnancy or try to tell me that I am over- protective of my babies, however those are only reminders to me that you don’t get me or my experience. That makes me feel lonely and sad and a whole slew of other emotions that I have not figured out yet.

I am not amazing★

I do not deserve to be on any parenting pedestal. Some days I am a great mum, some days I pray that I did not just screw up my kids for life. The tasks on my job description  for mum may look a little different from many other’s but at the end of the day, I am just doing what I need to do, to give my kids their best chances.

Trust me, that is what you would do, too! xx

★ letter to all new preemie mums ★

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  1. Don’t be afraid to speak up and speak out. Find your voice and share your feelings and concerns.Allow yourself the opportunity to correct others who misjudge your fears of the future as an inability to apprecaiate the miracle of your child.Grieve!!! Many things have been lost their way – a normal pregnancy, a normal birth, a normal daparture from the hospital.. the list goes on and on….Grieve it all!! You are experiencing loss!
  2. Know that you CANNOT prepare yourself for the future (after all no one can predict it) and force yourself to stay in the present. Deal with the hurdles of the day! Praise every single day!
  3. When your mind starts to ask the “what ifs”about the future, when you start to doubt the path you are on, don’t beat yourself up for it. Face those “what ifs” with courage and know that the strength you are discovering will emerge as you face each and every new trial.
  4. Remember that your child – not the statistics – will determine his/her path.
  5. You are not alone! Some of the most therapeutic times are found in the NICU when mums begin to connect. Share stories with each other. You will find that these women have now become the only ones who understand your heart.

This journey you are on, it is a battle. It is likely to take some turns. Sometimes it feels like nothing changes. But you will emerge. You will make it. The battle will end. You will begin to find happiness and good times again and you will look on your scars knowing that each one represents something you have conquered.

With all my love

★ caffeinated mum of two miracles★

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Instead of August 28, 2015 my twin girls were born 95 days earlier! 95 days in the NICU! Having babies in the NICU is an intense experience that hits you like a giant slap in the face. Then it waits for you to shake it off and it drop kicks you in the stomach. Not only you are heartbroken and terrified and desperate to see your babies grow and develop, you are also constantly in the verge of losing your mind completely from stress and exhaustion and worry and all the emotional ups and downs. Plain and simple the NICU is traumatic!! All the uncertainties, the obstacles your child faces, the pain, the statistics…

But you will emerge!

You will find a hidden strength that you never knew you had. And you will see the strength of you child. You will grow amazed and proud of them as you watch them win their battles.

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