It Wasn’t Supposed to Be Like This

She stands beside the incubator, her eyes fixed on her tiny little boy.

I’ve offered her a chair but she knows that if she sits down she won’t be able to keep her eyes open, so exhausted is she from her almost constant vigil at her baby’s side. The only time she’s left the room is to go and express breast milk, clinging to the hope that one day her baby will be strong enough and well enough to drink it.

Despite her exhaustion she doesn’t want to sleep because she knows that this could be the last day, these the last hours and minutes and even seconds that she has to commit each and every detail of him to her memory.

She doesn’t have those lazy mornings and those soft, sleepy hours in the middle of the night when there is just you and your baby and you have all the time in the world to get to know each other.

The times when you lie so close together that you’re breathing the same air and you realise that you would give up anything for this tiny, helpless person who has rushed into your life and stolen your heart and you don’t even care because the love you have for them is so powerful, so all encompassing that you can’t imagine how you ever lived before they became part of your world.

It’s oddly impersonal in the intensive care nursery, seeming somehow the completely wrong environment to witness a struggle so intense that we can’t even tell this mother whether her baby will be alive at the end of the day.

Besides that one small corner where an already grieving mother sits beside her desperately sick baby the rest of the room has to carry on as usual. We speak in softer voices and try not to chat too much but there are still things we have to do and, cruel as it sounds, for all the other babies and families, life goes on.

The doctors make their rounds, the phone on the wall keeps ringing and other parents come to visit their babies. They ask whether their little ones have gained weight, stopped one of their many medications or managed to tolerate just a little bit more milk. They grab hold of each gram, each drop of milk, each tiny victory that moves them just that little bit further away from the thing that they fear the most.

They steal glances, these parents who have hope, quickly looking over into the corner of the room where the mother bereft of even the tiniest of victories sits, still watching her little boy. She doesn’t seem to notice them, so focused is she on her baby, as though the sheer power of her gaze and the force of her longing has the power to heal him.

Watching

Waiting

Waiting for even the smallest, briefest, seemingly most insignificant sign that will prove to her that he’s not ready to give up the fight just yet.

I feel like an intruder, barging in on time that is so precious so that I can administer medication, or take blood or do one of the seemingly endless tasks that make up my day of trying to keep this little boy alive.

I quietly open one of the incubator doors, softly telling not to worry, that it’s only me, reassuring him that I’m not going to do anything that will hurt him.

Mum looks surprised to see me, almost as if she’d forgotten that there was anything in the room or even the world apart from her and her baby. She looks as though she wants to say something so I finish what I’m doing, gently close the incubator door and walk round to stand next to her.

For few moments we both stand quietly, looking at the little boy who seems so tiny and lost in amongst the multitude of wires and tubes and medical equipment.

So small

So incredibly fragile

Clinging to life by the thinnest and most delicate of threads

Mum looks away from the incubator, looks at me with an intensity that borders on desperation and asks me if she’s doing the right thing by letting her little boy fight on.

She searches my face, looking for something in my expression to tell her what to do. I want to speak, to try and offer support or comfort but the words stick in my throat because how can I possibly tell her which choice is wrong and which is right?

Something as simple as right or wrong has no place here.

In their greatest hour of need parents look to us help them make the most difficult decision of their lives and we have no more answers than anyone else. We can talk about statistics and survival rates, explain procedures and treatment options and the likelihood of them making any difference but we can’t tell them what to do.

She looks back at her tiny boy.

“Oh Sweetheart” she says “It wasn’t supposed to be like this.”

I have to bite my tongue to keep in control of the tears that have suddenly blurred my vision because this is one occasion when it isn’t ok for me to cry.

As heartsick as this mother is right now, she does not have any tears to cry and she certainly doesn’t need mine.

Right now this mother needs me to be strong, someone to lean on when she is so wrung out and confused and utterly broken that she isn’t sure how to put one foot in front of the other and take the next step down the path she has chosen because she hopes it is the right one.

As desperate as she is to keep him here, for him to keep fighting and to stay with her, in her heart she knows that there may come a time when he is no longer fighting for himself and despite every nerve and instinct, every fibre of her being screaming at her to do something, anything to save her child, she may have to find the strength inside herself that allows her to let him go.

My tears may have a place later; if the time comes and the worst happens and my red eyes and tear-stained face show that I share even the smallest part of the grief that no parent should ever have to feel.

But that place is not here and that time in not now.

Not yet.

Louise is a full time mum, a part time neonatal nurse and award nominated blogger who has battled depression for many years but was particularly ill during her pregnancy. She lives with her husband (the Northern One) their little boy (Squidge) and their three guinea pigs who live in the kitchen. 

Louise blogs at 23weeksocks (http://23weeksocks.com) about lots of different (and seemingly unconnected) topics that she’s passionate about, including mental health, antenatal depression, neonatal care and baby loss. She’s also involved in #MatExp (https://www.facebook.com/groups/MatExp/); an online maternity experience campaign that was formed to help improve maternity services in the UK. As part of this she hosts the #MatExpHour Twitter chat every Friday and would love to see you there.

15 thoughts on “It Wasn’t Supposed to Be Like This

  1. viktoriyask says:

    Thank You for this post! I just relived those moments when my little boy was in NICU for 8 days. I felt like if my life had stopped and nothing mattered but my little boy fighting for his life. I am so deeply grateful to nurses an doctors, who like you, were there with us providing support and reassurance. I wish I could thank them all personally again, but I was so deeply in my world that I do not remember their names. But I do remember how they cared for my son, how they send me off to have some rest or sleep or they even remembered if I had eaten or not; they would bring me a pillow or cover so I could have some rest next to my baby. There was a moment when I totally lost it and just couldn’t stop crying, thinking the same thing “It shouldn’t have been like this”… and then a young (looking) nurse came to me and somehow found the right words and I felt better. Better enough to keep fighting through this with my baby. And he is a fighter. We got discharged just a day before my birthday. We took our little boy home. I have a photo on my phone from those days as a reminder on how much we went through and that the help was there. There were moms who stayed behind, coming to their little ones day after day for very long times… It was tough on us, but I cannot even imagine how tough it is on them. Moreover, how tough it is on those who provide care to those little angels. You know more than we do… I do not know how you manage not to cry. But THANK YOU for being strong. THANK YOU for being there when it is tough. THANK YOU for caring and writing about it. I hope with all my heart that there is enough strength for everyone in this story…
    THANK YOU!

    Liked by 1 person

  2. All The Days The Lord Has Made says:

    Wow… such an amazing post. I have been that mother. For 5 months my twins, my daughter and son fought for their lives. God had plans for them… and thankfully their story isn’t over. We have seen a lot in the NICU. So much that no one tells you about… no one prepares you for… no one helps… We had 4 amazing primary nurses. If it weren’t for them, I don’t know how I would’ve gotten through most days. Thank you for this beautiful post. Am hoping I can share it on our website and Facebook page? ? Again. …thank u. It was beautiful ♡ God Bless you

    Like

    • blopmamma2014 says:

      I’m so pleased you got to take your babies home; parents go through so much on NICU at it seems so incredibly cruel that after everything some don’t leave the hospital with their little ones. I’m so sorry it’s taken so long to reply to you and while I imagine you’re long past wanting to share my post, if you still do then I would be more than happy. Thank you for reading and for sharing part of your NICU story.

      Liked by 1 person

      • All The Days The Lord Has Made says:

        Thank you for responding!! I will definitely be sharing your post. We have a non-profit organization for NICU parents and I try to share any all information, resources and helpful articles. Thanks Again.

        Like

  3. Sara (@mumturnedmom) says:

    This is one of those posts that needs to be written, and should be read. For those of us who have been fortunate enough to have no first-hand experience of this, we need to understand better and we need to be able to talk about it. Thank you for sharing x #sundaystars

    Like

  4. carla says:

    Your job is so incredibly difficult but I can imagine very rewarding. Thank you for opening my eyes to the difficulties of being on a NICU ward.
    I’m glad I got to meet you at Britmums
    Carla
    xxxx

    Like

    • blopmamma2014 says:

      I’m very glad I met you too 🙂 I do find my job difficult and some days it feels like the saddest job in the world but on other days it’s so rewarding and so joyful. I do honestly love my job and the ups and downs are all part of it. Thanks for reading.

      Liked by 1 person

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