Tuesday, 5 June 2012

Greatest of the greats

While looking for inspiration for a blog post I stumbled across this small article and thought it made an interesting, and slightly patronising, read!
The preemie brain can never catch up, it seems. If you were born very prematurely, after baking for less than 32 weeks, instead of 37 to 42 weeks, odds are you could have been a bit brighter than you are. Your white matter — the brain’s wiring cells — simply couldn’t recover from that early interruption.
 Researchers used a form of MRI to measure the performance of brain regions in adults, comparing people born very early, and those born at full term. The cells of the white matter in preterm adults simply don’t function the way normal ones do. And that malfunction correlates with three factors:
 • weight at birth 
 • degree of prematurity
 • adult intelligence 
Ouch. On a comprehensive IQ test this amounted to a difference of 11 points lost, compared to the normal-term group. The very-preterm average was 95.5. 
 While that’s miles from mental retardation (less than 70), the gap is noteworthy: For best results, do not open oven door while cake is baking."
The title is alarmist, the last line in particular is priceless and I think the whole article a bit simplistic. The author doesn't appear to know anything about prematurity - I mean, doesn't she know some of the greatest minds in history were preemies?
  • Albert Einstein
  • Anna Pavlova 
  • Charles Darwin
  • D H Lawrence
  • Franklin Roosevelt
  • Isaac Newton (so small at birth he fit inside a quart mug)
  • Jean-Jacques Rousseau
  • Johann Goethe
  • Johannes Kepler 
  • John Keats 
  • Mark Twain 
  • Napolean Bonaparte
  • Renoir
  • Sir Winston Churchill
  • Stevie Wonder
  • Thomas Hardy
  • Thomas Hobbes
  • Victor Hugo
  • Voltaire
Despite early, traumatic beginnings, often in times when there was virtually no such thing as neonatology these are people who have changed the way we think about the world, they are the best scientists, physicists, painters, writers, philosophers, dancers and politicians.
Maybe the research is true, and some part of the brain is not fully formed properly, but looking at this list is that really a problem, maybe in not being fully formed it gives the brain opportunities to open up and expand in new ways.
I look forward to the day our preemies names will be up there, with this list of the greatest of the greats!

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

Friday, 6 April 2012

Wow, isn't she advanced!

This was said to me by a well meaning father once as our children played together at a soft play centre. Heidi had just started crawling and was understandably very proud of herself, she was wriggling around on the floor with a beaming smile on her face, this she directed at the man whose daughter was running around and playing with Heidi. Being a rather charming little girl the man started talking to her, and eventually me. After chatting for awhile the man is watching Heidi crawling and comes out with ‘wow, isn’t she advanced’, now don’t get me wrong I was so proud of Heidi but she was 18 months old and had only just started crawling, so I don’t think advanced was quite the right word! But she was also the size of your average 3 month old, so I can understand why he said it, I just smiled and nodded and tried to carry the conversation on. It didn’t work…’So how old is she?’ ‘well’ I mutter under my breath ‘about 18 months’…a look of confusion crosses his face, and then realisation that he may not have said the most appropriate thing. I politely return the question ‘how old is your little girl?’ I wonder why his face starts to turn a little bit pink, and then he answers rather sheepishly ’10 months’. WTF that huge toddler running around is 10 months!! Is he saying it just to wind me up or is she really the worlds most advanced child?? ‘Isn’t she doing well’ I say, after a few more minutes of awkward chatting we go our separate ways.
As a parent to preemies you come across so many assumptions that are made about your child, some more frustrating than others. This assumption was one of the positive ones, in comparison to some others that have been made about Heidi, although slightly embarrassing for the man!
I have to admit I did find seeing him squirm quite enjoyable, does this make me a bad person, or just a preemie mum??

Wednesday, 4 April 2012


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.

Tuesday, 14 February 2012

Google it...

I have a confession to make......
There is one piece of advice I have for any parents out there, and that is do not, under any circumstances use Google to find out about any health concerns you may have for your child. If you are worried or don't understand  something ask a doctor, I repeat, DO NOT use Google!
In our house we have been having a bit of a swap around and me and the girls have changed rooms, amid all the chaos I found Heidi's discharge summery from Neonatal, it makes for interesting reading! Firstly there are a few things on there that I don't remember happening, but I really should. Is my memory really that bad, or did my brain just get to a certain point and just think 'no, you have enough of this driving you crazy, I'm not going to remember that as well'?? Who knows, well, clearly not me!
Secondly, there were a lot of words on there that although I know them, I'm not entirely sure on the correct meanings. So I of course do the sensible thing, and with the letter still firmly clutched in my hand I fire up the laptop and set about Googling practically every other word. This was not a good idea, but once I started it turned into a bit of an obsession and I could not stop until I had reached the very last word. Thankfully it was only a brief summery, or the hour I spent at my computer could easily have turned into a day. I got to understand my daughters Neonatal journey that little bit better, and in hindsight I could have done without that, but it goes to prove what a real miracle my wonderful Heidi is. However, the thing that I am most thankful for after doing this is that I didn't have a computer and never Googled anything during Heidi's stay, it would have truly tipped me over the edge. Going through the NICU with a certain amount of naivety was definitely the best thing for me.
So although I have obviously completely ignore my own advice, to other parents I would still say the same - Google is bad for your health!

Thursday, 26 January 2012

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....

Monday, 23 January 2012

The Princess Returns....

And this time she's bought back up... In the form of little sister Elsie. 
Between the two of them they have firmly reminded me of exactly who is boss in our household, and it isn't me! Heidi has tonsillitis again, and has gone back to her regal ways of lying on the sofa making demands, although she's not quite as dramatic as before, no angel to watch over her this time. Elsie, who after watching Heidi's masterclass before decided she would give a go as well. So she developed bronchiolitis... this was not supposed to happen, Elsie is my easy baby, Heidi is the one who has the ambulance and hospital obsession. Ok, so it's only a mild case, and we managed to smile sweetly enough at the out of hours doctor that she decided we could go to the local A & E on our own, without the ambulance. Once there it was just a case of sitting and waiting, her sats, heart rate and resp rate were all borderline, so we waited until they were just under or over what they needed to be and off home we trotted. On the way out I realised, I don't know the way out, I was so used to being transferred over to the childrens ward from A & E that I didn't know where to go! Realising we'd had a lucky escape I walked as fast as I could out of there, before they called us back.
Heidi and Elsie have spent the days since this crying out their demands, being waited on hand and foot, with tempting foods and lots of entertaining. 
I love my girls to bits and I'm forever grateful for any time that we are not in hospital, and I appreciate that especially for Heidi this recent illness is pretty insignificant, but girls if you're going to keep up this princess lifestyle then how about finding mummy a prince to help out! :)