Four Weeks of Waiting

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Big Bro spent four weeks after his birth, in between intensive care and the high dependency unit. Those four weeks were the hardest weeks I’ve ever had to endure. The not knowing was the difficult thing. From one day to the next, I only had a rough understanding of what was happening – nurses, doctors, surgeons – they were all so busy, rushing from one cot to the next, probably saving lives as they did so. I have no quarrels with Big Bro’s care. They were all excellent, professional and took care of him to the highest standards.

My care? Well that was a whole different kettle of fish.

My first two days in Bristol, were spent on the maternity ward, in a private room. After trying to do so much in the first 48 hours after giving birth, I was more exhausted than I thought and it showed, by almost passing out in intensive care, after seeing Big Bro for the first time since his operation.

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My c-section wound was a mess. I had developed two large holes in the incision, which had been stitched on the inside and glued on the outside. Because the incision was higher up than it would normally have been, it lay precisely at the point where my post-baby belly hanged, forcing all of the fluid that had built up within, to gravitate towards that area and escape via the only place it could – my incision. So, while my body was trying it’s hardest to heal on the outside, within it was only just beginning the process, forcing holes in the scar tissue, in order to get rid of the slough – the nastiness that was trying to escape. I would have a dressing put on and within an hour, I would be soaked through and having to painfully rip the dressing off, so that it could be cleaned and re-dressed again.

After my two days on the ward, a place was found for me in a grotty little bedsit, just across the road from the hospital. My first night in there, I sobbed my heart out. Uncontrollable waves of anguish, grief and hopelessness. Why had life done this to me? Why had it robbed me and my son, from spending the first few hours of his life together? Why did I have to tireless pump milk out of my aching breasts, when I didn’t have the strength to even feed myself? Why did I have to be so far away from home?

The morning after, I woke soaked through to the skin. My milk had come through and my c-section incision, had leaked all over the bed. I couldn’t shower because I was told to keep the wound dry and I feared if I got the dressings wet, I’d have to endure the pain of being re-dressed yet again. I was smelly, dirty – I felt unclean and my mood lowered to the point where I was seriously considering just going home, leaving my son in the capable hands of the professionals. But I couldn’t. The importance of pumping my breast milk, for him to be tube fed through the stomach with, was drummed into me with urgency. My baby needed me.

A place was eventually found for me in more suitable parent accommodation. Ronald MacDonald House it was called and it was beautiful. I had my own bedroom with clean sheets, my own bathroom, a communal dining and cooking area, a place to wash all of my soiled clothing and Big Bros baby grows  It did a lot to improve my state of mind and slowly my strength was gathering once more.  One good thing though, always precedes a bad one, and that day, I was officially discharged from the maternity ward and told to register with a doctor, in order to be treated for my ongoing wound problem, by the district nurses.

I was distraught and totally confused. I thought that I would be looked after until I was better. I didn’t know the area and definitely couldn’t walk very far. But no, this is what I had to do apparently. I was sent away with a handful of dressings, to dress my wound myself, a small supply of blood pressure tablets and a feeling of complete hopelessness.

You carry on though don’t you? Against all odds, you just keep on going because you have no other choice and so that is what I did. That afternoon, I half walked, half dragged myself up to the doctors and temporarily registered there. I then went to the district nurses office, and explained my situation. They were totally perplexed, but took my details and assured me that I would see someone soon. In the evening, sat in my room with radio 1 playing the same song continuously in the background, I finally had a visist from the district nurse.

What an effect she had on me!

She was the most lovely woman I have ever had the pleasure to meet. She took one look at my c-section, which had made no attempt to heal further and tutted to herself. “You now what they’ve gone and done?” she asked, more to herself than me, “They’ve only packed the holes in your incision with the wrong dressing. They’ve put a wet dressing, inside a wet wound! How the heck do they think it’s supposed to heal like that?” Promptly, she cleaned the wound, packed it with a dry dressing, popped a couple of absorbent pads on top, then taped the whole thing down. I felt secure! Every other day she came to do this and I remember the immense feeling of pleasure, of being able to take the dressing off and shower before her arrival. I could actually feel clean and more human and things were starting to heal!

After that I started to gain more confidence and focus better on my son and my own health. I was eating better and had a good store of milk in the freezer. Big Bro was gaining a bit of weight and I’d finally mastered the art of changing a colostomy bag, and feeding him through a tube. It was decided on the fourth week, that Big Bro would be transferred back to the NICU in Exeter. There he would be kept in their high dependency unit, to grow and gain strength,  ready for his big operation in three months time. He would need it – it would be the operation to repair his Oesophagus and give him the means to eat normally through his mouth and it wasn’t a risk free one either. I breathed a sigh of relief at this news. I would be able to sleep in my own bed and jump on the bus in the morning, and spend the day with him. I would have my own things around me, could wash his clothes in my own washing machine. I could start getting his cot ready and buy all of the bits that he would need when he was eventually allowed to come home. I could also heal – both physically and mentally.

When I would get him home would remain to be seen. It depended on the success of the operation he would have in a few months and how he would respond to it after. That however, is for a different post, a post that will be extremely hard to write.

I welcome all of your comments and if you have personally been in a similar situation, then I’d love to hear your story also. If you wish to read the previous posts in Big Brother’s story, then you may find them here:

Oesophageal Atresia | The Journey Part 1

On Needles and Weightlessness

Giving Birth Was Not What I Expected.

My Special Care Baby

9 thoughts on “Four Weeks of Waiting

  1. I can, sadly, relate to a lot of your story. The care of our sick babies is exemplary, but often the care of the mother is woeful. I am so sorry you felt so cut off and a lone, but hooray for that district nurse who, quite literally put you back together.

    Thank you for bravely sharing your story.

    • She was a wonderful woman. Her bubblyness and constant optimism, brightened my days while I was there. I think without her help, it would have taken me a lot longer to get over those first four weeks!

    • She was a lovely lady, with a deep brummie accent, and an infectious personality. I wish she could see us now and how well Big Bro is doing, and to tell her that her care, at that moment in my life, was the one thing I needed the most.

    • I think the thing that alienated me the most, was that Big Bro wasn’t premature, just very poorly and requiring a lot of surgery. It seemed to me, that the parents with the premature babies, were getting the gentle, helpful and sympathetic approach, whereas because Big Bro was bigger and required less attention, I was more or less left to get on with it.

      I’m not bitter about the experience, but I do think it could have been handled differently. There’s nothing worse than feeling alone, in a place that is unfamiliar to you.

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