Sunday, 6 May 2012

Heidi's journey

Heidi was born at 27+2 weeks gestation and weighed 2lbs. When we met for the first time I could just about make out a tiny scrap of red through the condensation on the incubator walls, and under all the tubes and wires and a green hat that seemed to cover her entire body.
That night I went to sleep still hooked up to drips and clutching a picture of my daughter in my hand. The next day when I visited the NICU again I was able to take in a bit more, the doctors came to talk to me, Heidi had to be ventilated at birth and a brain scan had shown that she had a brain bleed, a grade 2 intraventricular haemorrhage. It was explained that the next few days would be critical, they would keep an eye on the bleed to make sure it didn’t get any worse, also she wasn’t weeing yet which was a problem. The next few days were a blur of anxious waiting and drug induced hallucinations, but Heidi improved, she started to wee and was weaned off of the ventilator and  onto cpap. That night I was also allowed back onto the maternity ward, and could walk for the first time. That night I went to sleep feeling marginally more relaxed… only to be woken a few hours later, less than 24 hours after she had been weaned off the ventilator Heidi had a collapsed lung and had to be ventilated again. It was a scary night, but they managed to stabilise Heidi and a few days later she was back on cpap. Heidi progressed well and at 8 days I was allowed to hold her for the first time, although it was very much a case of being in the right place at the right time. A pillow was placed on my lap, and Heidi was placed on the pillow, my job was to hold all the tubes and wires, it was a far cry from what I’d imagined my first cuddle to be like and miles away from the kangaroo cares I would come to love. I held her for the time it took the nurse to swap her incubator for a clean one.
For two weeks there were long lines, transfusions, canulas, light therapy, scans, antibiotics and numerous other things, and then Heidi was well enough to be promoted to HDU.
Heidi continued to do well in HDU and managed to have breaks from cpap and was tolerating her milk well. About 2 weeks after she was promoted Heidi contracted nec, luckily she was able to manage this with just antibiotics and 10 days off feeds, although she was noticeably more ill during this time. Again she began the slow progress.
Then came the day my world fell apart. At about 6 weeks I had the phone call every parent fears while their baby is in NNU, it was a Saturday morning and I was just getting ready for a day with my baby when the phone rang. Before I answered I started shaking and then the nurse simply said ‘you need to get here now’ no information was given when I asked, I was just told that I needed to get to the hospital as soon as possible and she then made sure I had transport. I sat in the car with my mum shaking and praying that we would make it to the hospital in time. The journey to the hospital took half an hour, I walked into high dependency to see the screens up around Heidi and a team of doctors and nurses doing CPR on her, they had been doing this for at least 30 minutes. The doctor told me that Heidi had developed pneumonia and sepsis, and as a result had a cardio respiratory collapse. This basically meant that her body and internal organs were shutting down. As well as the severe chest infection, severe sepsis and failing organs, there were added complications. As I stood looking at this gray wax doll that had taken my baby’s place these complications were explained to me, because of everything shutting down things inside Heidi had started to contract and because of this they were having problems intubating her, if they continued to have problems with this there was nothing more they could do for her. I was lead away to the ‘quiet room’ while they continued working on Heidi, I sat in this room for what felt like hours repeating mantras in my head, alternating between ‘that wasn’t my baby’ and ‘I don’t want her to die’ eventually the dr came in and told us they had managed to ventilate her and she had been moved back into intensive care. She then went on to explain that because she had gone so long with such low levels of oxygen there would be some brain damage, they worried that the extent of the brain damage would mean that Heidi wouldn’t be able to breathe on her own, again if this was the case, there was nothing more that could be done for her. I was told to prepare for the worst as they didn’t like her chances of surviving the next couple of days. They wanted to transfer her to a more specialist hospital, but she was too unstable to travel, it felt like a lose/lose situation. Then we were told that they were unable to place a longline, they needed this to give her the drugs she needed to fight the infection, and without them she had no chance of survival. It was like being repeatedly kicked when you’re down. One of my poor friends that I had made in HDU came up to me in the milk kitchen as I stood like a zombie washing expressing equipment and congratulated me on Heidi being promoted to Low dependency, I didn’t know what to say and just walked away (luckily she understood and we’re still friends). The days passed with me not talking to anyone, sitting by the incubator and watching my baby fight for her life. Doctor after doctor came to try and place a longline in multiple places on Heidi, none could do it. The head consultant was called in from his time off, and turned up on his motorbike in jeans and leathers to try, again no luck, they tried to get a doctor down from Bristol to do it, but none could come. They kept trying for 3 days, eventually shaving her head to place the longline there, they couldn’t do it. Again we were warned that we should be preparing for the worst, but amazingly the doctors managed to give her the highly toxic drugs through canulas, she needed about 8 in at a time and they frequently needed changing as the meds would cause the canulas to tissue in a matter of hours. Heidi still has the scars on her legs from the canulas that tissued and left her with chemical burns, what once covered the whole of her shin is now a tiny scar just over an inch long. We call it her lucky scar. Then even more amazingly Heidi started to take breaths over the ventilator and when she was well enough for a brain scan the doctors were gobsmacked to find that there was no brain damage. My little miracle baby had surprised everybody and pulled through when nobody had expected her too. Once again she was weaned back onto cpap and I began to bond with the baby that I had started to grieve for. After a couple more weeks she was once again promoted to HDU and then eventually Low dependency. There were a couple more hiccups along the way, but none quite as spectacular as ‘the collapse’.
At 12 weeks, the day I had prayed for became reality, and I got to bring Heidi home, she weighed 4lb 7oz, wasn’t on oxygen and was surprising well for a little girl who had been through so much. At home Heidi thrived, and although she had poor weight gain, delayed development for the first 2 ½ years and has spent a substantial amount of time back in hospital skating closer to the edge than I’d like, and has yet to be signed off from her consultant, I am unbelievably proud of the extremely happy and (mostly) healthy little girl she has become. She changed my life and she really is my little fighter xxx


  1. My goodness, what a moving and at times harrowing story. You both must have such a special relationship after going through that and coming out the other side. These babies are incredible fighters. As are you for coming through too-not an easy feat xxx

  2. They certainly amazing little fighters. Thank you for reading, it was hard to write, kind of like ripping a plaster off (that had been stuck for 3 1/2 years) I had to do it quickly and without thinking xxx