Back to hospital – where no NICU parent wants to be

 

Guest Post by Sara Wood, who shares her story of George, born at 29 weeks and his sudden and frightening re-admission to hospital.

Having a premature baby turns your life upside down and it is hard for others to truly understand your journey; the days, weeks and months spent staring into an incubator just praying for a small change. Finally the time comes and you can bring your baby home. You feel joy and pride, but most of all as a parent you can feel very anxious.

For me and my partner, our son George was born at 29 weeks weighing just 2 pounds 7 ounces. He had many obstacles to overcome, the main one being his respiratory function. After 9 long weeks in Neonatal Intensive Care Unit (NICU) he finally came home in oxygen – just in time for Christmas!

For babies born too soon, attendance at A&E and re-admission to hospital can be a common occurrence. Just as you relax, get yourself into a routine and are comfortable with life at home you can find yourself back in a sadly all too familiar environment of beeping machines and intensive care staff.

We’d only been home for 4 weeks when my son caught a common cold. He started to reject his feeds and I took him into A&E sick with worry. He was admitted straight away to the children’s ward where his daily intake of milk was barely 5 ounce. He continued to become very sleepy and dehydrated to a point where he couldn’t feed anymore without violently vomiting. Where he had spent hours and hours crying before, he couldn’t even find the energy now to make the slightest of noises. I could see him deteriorating before me and felt helpless.

For babies born early catching even a simple cold can land them back in hospital, particularly with the nasty viruses that cause Bronchiolitis – this is what had happened to George. The doctors sat us down and explained that the symptoms usually get worse before they get better, and that because it was caused by a virus there was no medication, for example antibiotics, that could ‘kill’ the virus.

By the next morning, after no sleep from either of us, George continued to deteriorate and he had to be transferred to the Paediatric Intensive Care Unit (PICU). The doctors wanted to put him on CPAP (continuous positive airway pressure) to help with his oxygenation levels and to allow his body to fight the virus. Around 20 minutes later though George’s lung had collapsed. He couldn’t breathe for himself anymore; too tired and too exhausted to continue to do it on his own. He was intubated and ventilated with a breathing tube and at this point we were hoping and praying that he would begin to fight the infection now he didn’t have to worry about his breathing too. Watching your baby be intubated and ventilated is heartbreaking. With a breathing tube and 7 other different lines it was difficult to see how he was well and kicking only two days before and now here he was, fighting for his life.

George spent the next 4-6 hours fighting against the ventilator, at one point his heart rate continued to drop and he went into cardiac arrest. His oxygen was turned right up to 100% and he was still only saturating at around 55% blood oxygen. The cardiac team came running in from downstairs, as did every doctor and nurse in the unit. My partner and I could do nothing but stand by and watch helplessly as our son had to undergo CPR – something no parent should ever have to see.

They sedated him with a cocktail of drugs; drugs that kept him in a medically induced coma which settled him and gave him the chance to be the little warrior we all knew he was. That Friday night was touch and go; the doctors sat us down once more and told us that even though it is rare, sometimes babies do not make it through infections like this. Our minds were all over the place, fear had overcome us and all we could do was sit and wait, praying he would turn that corner and start to get better.

It took George 6 days to be well enough to come off the ventilator, but those 6 days felt like a lifetime. The worst part was seeing how susceptible pre-term babies are to even the most common of colds (Bronchiolisits affecting 1 in 3 babies before the age of one), and watching how they can decline in a matter of hours. This after all they have already been through in their tiny lives – seeing them fighting again, back in the intensive care environment.

That precious cuddle I had once he had the breathing tube taken out was the best feeling of my life. After 6 days of only being able to hold his hand and or stroke his head I could now talk to him and he could stare at me in the innocent way he always did. We spent another 3 days in hospital, but I didn’t mind. I would have spent the whole first 9 weeks in hospital again if it meant I knew he would come home safe. The worry and fear that you feel when watching your child become so ill over the space of 24 hours is absolutely heart breaking. Sadly though it is an experience shared by many of us with pre-term babies and one often shared alone with little follow up or support.

George is now doing great. We’re hoping to have him off his oxygen in the next 1-2 months and he is now 5 months old and getting very chubby! My partner and I couldn’t be any more proud of him than what we already are. After everything he has been through he is a miracle – our warrior.

You can find more information about prematurity & bronchiolitis at – More than a Cold

For more stories on re-admission, bronchiolitis and RSV, see our post on More than a Cough.. a sound that fills me with dread.

One thought on “Back to hospital – where no NICU parent wants to be

  1. Ashleigh Cobley

    This happened to both my twins after they came home from NNY. The smaller one ended up being intubated for a month in PICU. More awareness of this is def needed.

    Like

    Reply

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