Unknown

When Squidge attempted to arrive at 26 weeks me and the Northern One were forced by the situation to think about whether we would want the neonatal team to attempt full resuscitation if I did progress into full labour.

I lay on the bed in the early pregnancy unit, strapped to the foetal monitor, holding the Northern One’s hand so tight that my knuckles were white and I cried with fear.

As it was everything settled down reasonably quickly and after three nights in hospital, various medications to halt labour and two lots of excruciatingly painful steroid injections I was discharged home.

It was still too close for comfort, especially as I later discovered that my local hospital had run the unit where I worked to check that they had an intensive care bed and the transport team was on stand by to come and collect Squidge if he did arrive.

Although our local hospital did have a neonatal unit it was unable to care for babies born under 27 weeks. As it would probably have been too dangerous to transfer me while in labour Squidge would have been born and stabilised in that hospital and then transferred to my unit in an emergency ambulance driving up the motorway with blue lights flashing and sirens blaring.

I would have had to wait until I was sufficiently recovered to be discharged from the maternity unit and travel by car before I was able to see him.

In the end Squidge didn’t arrive until 37 weeks but I honestly don’t know what decision we would have made.

He was our baby and we would have done anything to save him but we also know what the cost of saving him would have been for all three of us.

It would have been hell for him, for us and for our family and there would still be no guarantee that the day would come when we were actually able to finally take our baby home

More premature babies are surviving than ever before but it is still a very small minority that escape unscathed, suffering no lasting effects from their NICU ordeal

We would have had to decide whether we were trying to save Squidge for his own sake or because we couldn’t bear to let him go, no matter how painful and difficult his struggle for life would have been.

Being born fourteen weeks early would have meant him spending months in NICU, away from everyone who loved him.

We would have had to say goodbye to our tiny boy every night and leave him to go home.

The ¬†nursery that we’d loving painted and decorated for him would have remained empty, a painful reminder of how sick our little by was just across the landing from our bedroom.

Squidge would have been subjected to seemingly endless painful procedures; blood tests, insertion of lines and cannulas into his tiny, fragile veins.

He would have needed a ventilator to breathe for him but at the same time the ventilator would have damaged his tiny lungs, possibly irreparably.

He would have been at risk of bleeds in his brain, infection of his gut, damage to his heart and lungs and eyes.

He would have needed medications that could have caused him to go blind or deaf if given incorrectly and infusions that could have caused horrific burns if they’d leaked onto his delicate skin.

He might have needed blood transfusions or surgery or to be transferred to another hospital miles away.

All things that could have impacted on the rest of his life.

And ours.

Every time the phone range we would have been terrified that it was the hospital calling to tell us that Squidge was very sick and we needed to come in straight away.

We would have had to watch as he cried in pain, powerless to do anything except try to console ourselves with the fact that he wouldn’t remember anything.

Our role as parents would have been taken away from us, governed by alarms and monitors and wires.

We would also have lost our roles as doctor and nurse, having to adhere to the decisions or our colleagues whether we agreed with them or not, making us feel doubly powerless and even more helpless than if we’d never set foot on a neonatal unit in our lives.

Instead we would have had to ask someone else whether we could hold him or change his nappy or whether we could bring in visitors to see him

We would have spend seemingly endless days watching Squidge inside his incubator; separated from him by a layer of plastic.

Every fibre of my being would have screamed at me to protect him, to hold him and comfort him, to ease his pain and stop his tears.

Separated from him by his fragility, his delicate skin, his potential to contract infections.

We might have lost him.

Even if we had been able to take him home it wouldn’t have ended there.

We might have taken home a healthy little boy or one who was mildly or severely disabled.

We would still be watching him now, worrying that every cough and sneeze was a sign of a serious respiratory infection.

I don’t know if either of us would ever have been able to return to work in our current jobs working with sick children. I’m almost certain I wouldn’t be, especially as Squidge would have been cared for on the unit where I work.

Squidge would never have known how sick he’d been until we told him, when we thought he was old enough to understand. To him to it would probably be a novelty, something to share with his friends as he showed off his scars but for us the memory would continue to haunt us for the rest of our lives.

Every time we went to the hospital, for a visit or a check up the sight of the incubators and the sound of the alarms would have brought everything flooding back. I’ve read about ex-NICU parents having flashbacks and panic attacks; the sound of something similar to the monitor alarms is enough to cause them to feel such extreme fear, even years later.

The experience of NICU colours everything that you do for the rest of your life. It impacts upon your relationship with your partner, your family and your child and on whether or not you decide to have another baby.

The cost is enormous.

You could argue that no cost is to high too save your child and that may be so for the parents. They have chosen this path even if they have no real idea as to what it will actually require from them.

But the baby can’t make decisions; they can’t decide whether they want to fight or that they’ve given all they can give.

I honestly don’t know if I could put Squidge through that.

Or how I could possibly have let him go.

I just don’t know.

I hope I never do.

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15 thoughts on “Unknown

  1. Leigh Kendall says:

    Reblogged this on Headspace Perspective and commented:
    This post by 23 Week Socks describes her thoughts about the decisions she and her husband were faced with making when her baby threatened to make an early appearance at 26 weeks. As a neonatal nurse (and her baby would have been cared for in her own unit), she knew more than the average parent the challenges her baby would face in the neonatal unit.

    When faced with the premature birth of Hugo, the discussions we had with the neonatal consultants were terrifying. They told us straight: our baby had a 50/50 chance of being born alive, or having a short and painful life due to a variety of challenges such as a brain bleed, and bowel problems. They asked us if we would like them to attempt resuscitation, and we did not hesitate. Our baby was so wanted, and we knew that when the time came for our baby to be born it would be by Caesarean section, while I was under a general anaesthetic. Martin was not allowed in theatre. That would have meant neither of us would have met Hugo, or have got to know the special boy he was.

    Being a neonatal mummy can be torture. You just want to pick up your baby and give them a cuddle, but you can’t. There was a time when a doctor pressed on Hugo’s tummy during an examination; he screwed up his little face in pain and discomfort. I just wanted to pick him up and make everything ok for him, but I couldn’t. I sobbed instead.

    There were times during Hugo’s life that I wondered whether I was being selfish. He had so many wires in him, so many tests that he hated. We were hoping that it would all be worth it, that we would take our baby home: Hugo would not remember any of the trauma.

    That notion is why posts like this are so important. Yes, many premature babies do go home, and it is those heartwarming success stories we hear about most. However, like Blopmamma says, few escape unscathed. Hugo’s doctors say he was entirely comfortable, until the last day when he told us himself he had had enough. But what does ‘comfortable’ mean? What would Hugo have said if he could tell us what he wanted? His nurses said they could tell Hugo loved us, his mummy and daddy, and held on so well because he felt the intensity of our love for him.

    It is impossible to know, of course. These ‘what ifs’ and ‘did I do the right thing’ thoughts are part of grief.

    The 35 days I had with Hugo were so precious. I would not change for the world the chance I had to get to know my feisty little Hugo Boss, get to know his ways, the opportunity for those amazing cuddles. I would go back and do it all again for the chance to spend time with my son again. That means conveniently forgetting about the end. The awful decisions. The letting him go.

    I love him and miss him so much.

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  2. Zena's Suitcase says:

    This is a great post, and shows an insight that most of us probably don’t have. I know for me, that in that situation I would have done everything to save my child and give them a chance at life. I think as a Mother, you feel a connection from so early on the desire to nurture and protect takes over, and I know I would do anything to give my baby a chance #binkylinky

    Like

  3. meghanoc says:

    Reblogged this on Expecting the Unexpected and commented:
    This is good. Captures some of the thoughts and feelings we had when we learned Mabel had low fluid at 27 weeks. What were we willing to do to help our baby live and not suffer? Especially with the odds stacked against her- Down Syndrome, kidney issues, small lungs- would adding prematurity to the mix be a death sentence? or cause her days of suffering? or allow her to live? There were no easy answers. We ultimately decided she had the best chance after 34 weeks and chose not to intervene before then. Might sound heartless to some, but that decision might have been the more agonizing one we might ever have to make.
    I consider myself lucky. We made a decision that Mabel would make her own choices until then. She chose to stay with us. I sometimes think about the guilt I might have faced if her heart stopped before 34 weeks- what if we chose to intervene sooner? would she have lived? I’m lucky because Mabel came on her own at 36 weeks. She couldnt survive then, so I know she wouldn’t have survived if we took her any earlier. My heart aches for anyone facing such hard decisions.

    Like

  4. pollymixtures says:

    such a moving post. My daughter was born at 35 weeks and spent 1 day and night in NICU and 5 days in the intermediary care where I was at least allowed to hold her. I have so much respect for NICU parents. It’s such a challenging time and we had it pretty easy in comparison!

    Like

  5. Twinmumanddad (@Twinmumanddad) says:

    My twins were premature. They spent 27 days in between two hospitals, intensive care and neo-natal. It was the longest, hardest, most emotional time of our lives. I would have done everything and anything to keep them alive. They’re almost three now and both happy healthy girls. Thanks for linking up to the #BinkyLinky

    Like

  6. mrshsfavouritethings says:

    Wow…another amazing and beautifully written post. It must have been so hard for you and your husband. You have an added layer of understanding that the rest of us parents would not have. I can’t imagine what must have been going through your mind. But I am so glad that you never ever had to make this decision. Hugs Mrs H xxxx

    Like

    • blopmamma2014 says:

      Thanks Lucy, Squidge being premature was one of my worst fears because I knew exactly how difficult and painful it would be for us and for him. I honestly don’t know what decision we would have made and I hope we never have to find out.

      Like

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