Premature Baby – The Journey After NICU

I remember sitting by Little Lady’s incubator day after day wondering what the future held for her. At that point we had no idea if she would survive the next day let alone have her whole life ahead of her. 9 weeks later when we took her home, there was a huge relief that came over me. We would be okay now, we had her home, she was over the worst of it.

What I didn’t realise then was the journey that a premature baby then goes on once they have come home.

In case you are reading this without our back story Little Lady was born at 29 weeks gestation; she had chronic lung disease and was very very poorly for a while. She then went onto have a hernia operation a few weeks later which could have been fatal due to the anaesthetic. She pulled through everything, fighting every hurdle thrown at her and we had no choice but to fight along with her, she was and still is a true inspiration.

Once we had left the hospital her journey as a premature baby and our journey as parents of a prem baby really started. She came home connected to a monitor to check she was breathing which would click on every in and out breath and a bag full of medicine that resembled a pharmacy’s stock room.

For the first few weeks, she had hospital appointments weekly. She had eye appointments, brain scans, lung scans, hip checks, injections, physio. You name it, she had it. After the first few months these appointments tailed off, she was discharged from various different areas and was doing really well. They say the time when premature babies really thrive is once they are home and that was certainly true for Little Lady. She put on lots of weight and it felt like she was literally growing in front of my eyes!

One of the trickiest things I found about having a premature baby at home was the constant questions from well meaning strangers. They would ask how old she was, I would say, they would comment how small she was and I would find myself wrapped up in conversations about actual and corrected ages. It was such a long winded thing to explain and once I had explained that I would very often be asked why she was premature and then there was the twin conversation to be had too.

Every time Little Lady caught a cold for the first year I would worry, the nurses had warned me about the possibility of her lungs not coping and her ending up back in hospital but thankfully that didn’t happen. She needed some help with an inhaler a couple of times but that’s the worst it got in that area.

Little Lady was measured physically and cognitively on both her corrected age (the age she should have been if she hadn’t have been early) and her actual age. Many medical professionals had assured us that by the time she was two she more than likely would have completely caught up.

Here we are, 2 months off her 2nd birthday and we have a bright, bubbly, amazing little girl. However, I had a feeling something wasn’t right. She wasn’t walking and although people reassured me that every child is different, I just had a feeling something wasn’t right. It didn’t seem like she was a lazy baby or that she didn’t want to walk but more that she couldn’t walk. After having a consultation with a physio it turned out my instincts were right (Mamas, always trust your gut feeling!) and there was a problem. Little Lady has a Gross Motor Delay. For her this means that she has low muscle tone and increased mobility in her lower limbs which essentially means she’s a bit floppy. It is very common in premature babies but it hadn’t been picked up until now. We are on the way to sorting this now, she will get some special shoes to help strengthen her ankles and hopefully very soon she will be up and about.

Looking back at our stay in Neonatal, that was almost the easier bit of a premature baby journey. We had amazing medical staff to hand and they were there to sort anything. When she came home, the decisions were on us and we had to get it right.

I’m so very proud of what she has achieved so far and know she will keep going from strength to strength. Yes, she has done everything a little later but when she was born her mouth hadn’t even developed enough to know how to suck to feed. She has done wonderfully Also however, I am proud of me too, proud that I followed my gut and now we can hopefully get her the help she needs.

If you are a parent to a prem baby I am sending you all the love and strength, it is so much harder than it seems from the outside.

 

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