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

Okay

Just one little word can have so many meanings.

This was made abundantly clear to me when my second daughter was born at 34 weeks, after having my first at 27 weeks getting to 34 weeks with my second was a miracle and a completely new experience for me. I ended up having an emergency c-section under a general anaesthetic, so after I left recovery I was wheeled down to meet my little girl. As I was taken into intensive care I had an overwhelming feeling of déjà-vu, there was one of my favourite nurses stood next to the incubator with a huge grin on her face and a welcoming comment of ‘what are you doing back here?’ charming!

Then I looked in the incubator and was faced with a completely different sight, there was an actual baby in there, not a strange alien looking creature like her sister, but an actual baby, with chub and everything!! So even though she was in intensive care she was really not requiring much help, just a bit of CPAP and light therapy, I was feeling quite pleased with her, and myself, so I decided to text a few people to let them know she had arrived. The text went ‘Baby girl arrived this afternoon by c-section, we’re both ok’.

The next day my friend came to visit, she’s sat next to my bed in maternity and having dispensed with the pleasantries and I notice she is looking around, a lot!

Me -‘What are you looking for?’

Her -‘The baby’

Me – ‘She’s in the NICU’

Her – ‘But you said she’s ok’

Me – ‘She is ok’

Her – ‘Then why is she in the NICU?’

The conversation carried on for awhile, with me explaining that the baby was fine, that even though she was doing well she was still 6 weeks prem and so it was expected that she would need to spend some time on the NNU, and in my eyes she was fine. I think my friend was forgetting that I had previously had a 27 weeker, as she really couldn’t understand why I was saying that my baby was ok. It made me think about the times people would ask how Heidi was doing while still in hospital and I would often answer with ‘fine’ or ‘okay’ and how this might have been misleading to them. I didn’t say it with the intention of being misleading, I genuinely meant it.

So here is my definition of the word okay…

‘Okay’ means that although my baby is in hospital and currently ventilated/on CPAP today is good, she isn’t going downhill/requiring a blood transfusion/doesn’t have an infection/has not needed any extra tests/scans/x-rays, today she is stable, today she is okay.

Look for the positives

As a parent of a premature you get used to hearing lots of different reactions when people find out. Some people are genuinely caring and supportive (these are very few and far between, unless they also happen to be a premmie parent!) others know exactly how you feel, why, their cousin had a baby that spent a few days in NICU, so of course they know how I as a parent of a 27 weeker who spent 3 months NICU feels. The kind that you encounter most frequently are the people who really don't know what to say and clearly don't want to carry on the conversation, so they say the first positive thing they can think of while they are busy trying to work out how to get out of the situation!
So here is a list of the oh so helpfully positive things I have been told about having a prem baby

1. Oh bless, so cute and tiny - really? have you ever seen a prem baby, because although they are obviously beautiful to their parents, they are weird looking, kind of like aliens!
2. You must save a fortune on clothes - yes, my baby staying in the same size clothes for six months because she doesn't put on weight doesn't actually worry me because it's saved me some money.
3. You've got a built in babysitter (while the baby is still in hospital) - because the first thing you want to do while your baby is in intensive care is go out clubbing!
4. You can catch up on sleep (while the baby is in hospital) - sleep? what's sleep? because I for one didn't get much during the whole three months.
5. You're so lucky for not going full term - I would rather have gone a month overdue than watch my baby have to go through all the trauma of being early.
6. You're so lucky for not having labour - again, give me labour for a week rather than have an early baby.
7. You've lost lots of weight - stress, coupled with practically inedible hospital food, best diet I know!

Ok, so I realise that I may be coming across as a little bitter when people are just trying to be friendly, but it is really difficult to keep a smile on your face while these things get said to you, no matter how well intentioned they are. I manage most of the time, I have the occasional slip, but for the whole I keep a polite smile on my face then quickly move away, but one day, I don't know when, one day I will not be able to keep the polite smile on, and who knows what will happen then....

And then there were two

About two years after lying on the operating table while having a c-section with my first, and swearing I would never have any more children, I fell ill with a mysterious sickness bug! I know, it sounds obvious already doesn’t it, but I went along, naively complaining that the bug was lasting longer than 24 hours, and why was it only affecting me? After some gentle persuasion from a friend (Lisa, will you please do a bloody pregnancy test!) I finally bought a test and did it early one morning, I was so confident in the result, as I knew I was definitely NOT pregnant, that I even went back to sleep before looking at the results, then when I woke about 20 minutes later and blearily looked at the stick to see the word (yes, you guessed it) pregnant I was sent into a mild panic. My friend who had persuaded me to take the test received an early morning phone call over the result, because obviously it was her fault!

You see, it wasn’t that I didn’t want any more children, but after spending three months in the NICU with my first, it wasn’t an experience I wanted to repeat, which the doctors had done a good job at persuading me would happen if I had anymore children. So off I went to see my consultant, only to be faced with another doctor, someone who did a fantastic job at sending me into even more of a panic, he declared that the baby would definitely be born before 27 weeks and smaller than 2lbs, he then asked why I was looking upset! After some serious foot stamping and tantrum throwing on my part I saw my consultant, who managed to undo the panic that his colleague had sent me into.

The pregnancy wasn’t the easiest, and I had several stays in hospital, at my 34 week appointment (by this stage I was seeing my consultant and having weekly scans) I was told that I was having the baby now, and to be honest, I was so pleased to get that far I felt quite happy with that, or maybe it was because the consultant looked a lot like Derren Brown, so I may have just looked into his eyes too much. So I went up for my second c-section, which this time I had under general anaesthetic, and several hours later I was wheeled down the corridor to meet baby number two, and have take two at the NICU.

It was a slightly bizarre feeling to be going there again, but made easier knowing that this baby would be a lot healthier and need a lot less help than my first. Elsie Rose weighed a hefty 5lb 13oz and required a day, just one day, on cpap.  She stayed on the unit for just under 4 weeks, and then the hard work really started, two children at home, what had I let myself in for!

I dream of Freddy

I signed up to this blogging lark full of enthusiasm and raring to go, my head was full of ideas, but of course, as soon as I started to write the first post...nothing, all thoughts have left and I'm staring at a blank page with a small feeling of 'oh no' growing inside me. So I started to think about what inspired me to start a blog, basically my children, and I thought back to how it all began....
Once upon a time (3 1/2 years ago), in a land far far away (well, about 10 miles) I sat staring blankly at the doctors as they tried to tell me that even though I've packed my bag and I'm ready to leave the maternity ward, it's not going to happen, that's it, I had become an inmate. At 26 weeks pregnant the thought of spending weeks, as I then thought it would be, stuck in a room on my own, was sending me stir crazy after only a few hours! I had been told that I was to stay in until the baby arrived, which they assured me would be weeks, the plan was to get me to at least 30 weeks. None of this really meant anything to me, I was happily naive about the whole thing and my only thought was how was I going to cope without my film and book collection. Four days later and I was whisked off to the labour ward to be prepped for an emergency c-section as the pre-eclampsia had progressed far quicker than had been anticipated, several hours and lots of morphine later I was wheeled down to NICU to meet my baby for the first time.
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.
My first memories of meeting my baby are of lying next to her incubator and having morphine filled dreams about watching Queen perform live! Which, in my drug addled state inspired me to want to name her Freddy, luckily, I think, I waited several days, until I stopped having morphine and finally named her Heidi.
So, feeling completely lost and scared, but humming 'Don't Stop Me Now' to myself, Heidi and I began the long journey home.