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An Unexpected NICU Journey

Towards the end of pregnancy, thoughts are preoccupied with delivery. Will it hurt? What pain relief will I need? Even, how will I know that labour has started? I found myself asking. But, not once did it cross my mind that my baby might be poorly. On the tenth day past my due date I lost a little fluid. I had planned on having my baby at a midwife led unit, as I was

considered low risk, so I went in and they confirmed that it was in fact amniotic fluid. I was sent home and told to keep checking my temperature and rest up until contractions started. I had a few contractions on and off over night. In the morning I went back and as labour had not progressed I was sent to the hospital.

Poor CTGs and a LOT of meconium present when my waters were broke meant they wanted me in theatre for an emergency section, and fast. Penelope was here half an hour later. The room was full of people but I couldn’t help but think that it seemed dreadfully silent. We hadn’t heard her cry. I, however, had begun to cry and it was as I looked at my husband that we heard the faintest of whimpers. I caught a glimpse of her as she was wheeled out. She needed help breathing. Whilst I was in recovery my husband had been to see her in NICU and brought me a picture. She was perfect. But, it wasn’t looking good, she was on 100% oxygen and couldn’t breathe on her own. She had severe meconium aspiration and persistent pulmonary hypertension as a result. I managed to get myself into a wheelchair and go and see her. By this point she was on an oscillator, which was just petrifying to behold. My brand new, delicate baby was shaking away. We sat there for hours watching her sats, they were going down instead of up. Nitric oxide didn’t work either. We sat with her for ten hours and then the doctor wanted to speak to us. They had exhausted all the options at our local NICU, there was nothing more they could do now. He mentioned something called ECMO but there are only a few places in the country that do it. The closest place to us was Glenfield, Leicester, three and a half hours away. Luckily for us, there was a bed and Penelope met all the criteria to qualify for it.

ECMO is basically a lung bypass. Blood is taken out of the heart by a tube in the neck and the oxygen is added to it outside of the body and then the blood is returned, doing the lungs job, allowing the meconium to be cleared out. The team from Leicester came the following day, put her on ECMO and took her to Leicester in an ambulance where she stayed on ECMO for 36 hours. My husband followed her there and I was discharged the following day and met them both there, and although phenomenal to behold, it was easily the most terrifying thing I have ever witnessed in my life. She was then brought back to our local NICU in a helicopter! And, yes, they had teeny tiny ear defenders for a newborn! She was already proving to be a fighter. She was off the ventilator 24 hours later, but our NICU journey was nowhere near it’s end.

On ECMO. The tubes into the heart via an incision in the neck are the width of a pen.
On ECMO. The tubes into the heart via an incision in the neck are the width of a pen.

She was now breathing on her own but was unable to maintain a safe blood sugar level without a high concentration of dextrose. It took a couple of weeks to get the results back from the myriad of tests performed. It transpired to be something quite rare we were dealing with. She has congenital hyperinsulinism which means that she produces too much insulin, like the opposite of diabetes, causing dangerously low blood sugar. This was completely unrelated to her breathing difficulties she initially faced.

Even though she was admitted to NICU with what was a relatively common newborn problem for full term babies, that being meconium aspiration (albeit she had it to the extreme, the most severe case our local NICU had seen) it was dealing with awaiting a diagnosis for something more complicated afterwards that was particularly difficult. I can certainly sympathise with any parent whose child is in NICU with a rare, genetic condition not picked up on during pregnancy and waiting for the results of test after test. And, perhaps the most wearying thing of all was not knowing when we would be able to bring our baby home.

Once she was on her medication and beginning to stabilise there was light at the end of the tunnel.
However, from there we had difficulty “teaching” her how to feed as she had previously been NGT fed whilst we awaited a diagnosis. This was what felt like the most tedious part of our stay in NICU. She had reflux and consequently ended up on even more medications and with a speech and language therapist and dietician visiting her now. It seemed that she could not keep a bottle down, even the tiny bit she could manage. And, worse, when she was sick she would go hypo and her blood sugars would drop. This prolonged our stay in NICU a few times. But, after six weeks and two days and a very long discharge planning meeting and two nights ‘rooming in’ with Penelope, we were able to take her home. With the NGT still in. My husband was shown how to pass one. She was off it in no time when we brought her home and could practice feeds round the clock!

NGT was in for around two months.
NGT was in for around two months.

During this six weeks I found a little comfort from the Bliss magazines available at our NICU, and much of what was not covered in our discharge planning meeting I found in the Bliss handbook, which was especially helpful. I think that even though it is a great shock delivering a baby prematurely, it is just as much of an unpleasant surprise having a poorly full term baby that needs neonatal intensive care. What I would like to let any parents in a similar situation know should they be reading this, is that it really does get easier. And once you can accept that taking your baby home will happen when they are ready, it can even become enjoyable! The nurses are utterly fabulous, what a job to do! And are of great comfort. We documented and enjoyed some of Penelope’s “firsts” while we were there as if we were at home, but had the advantage of a helping hand. For example, the first bath! It is a place full of ups and downs, but take solace where you can, even if it is reading this for five minutes while your new baby takes a nap. And, most of all CONGRATULATIONS on your new arrival, from a parent of a ‘NICU grad’.

Penelope is now one!
Penelope is now one!

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