The Palace Park

The Palace Park

Sunday, 28 February 2010

Coming Home

Fang arrived on Wednesday evening, 24 Feb 2010 at 9:05pm on his own steam and without the much-insisted upon epidural. As par for the course with my overall pregnancy, the delivery was a little less than straightforward and there noticeable absence of an epidural. A true highlight for both Tim and I was Fang’s arrival was the arch of pee aimed straight for the delivering doctor that accompanied him. What can I say? He has always had a great sense of humour.

We named him James Robert Radcliffe Binnington, although I think Fang probably would have stuck with him. He was James to his papa and James Robert to me (along with a whole host of other endearments he probably would have grown up to roll his eyes about). He weighed 5lbs and 9 0z and fought a good hard fight against hydrops fetalis. His organs just couldn’t hold water properly and everything flowed out into his skin and his lungs were very underdeveloped from the weight of all the water around him during pregnancy, which was – ironically – caused by his own kidneys thinking they weren’t working well enough. He spent most of his time on a morphine drip, reclined back like a WC Handy lookalike crossed with the Big Lebowski (he had a very fetching pair of foam sandals that he wore most of the time and would have looked smashing in a bathrobe). He died on 27 Feb 2010 at 2:45 pm in the afternoon.

Both my husband and I are eternally grateful to the fabulous staff at the University College London Hospital Neo-Natal Unit, the staff at the Feto-Medical Unit, as well as all the other medical staff at Great Ormond Street Hospital and North Middlesex Hospital (for the most part) that we have encountered through this arduous journey. For every whine and whinge I've uttered and written about during this pregnancy, I am so very, very aware that I have an amazing world class healthcare system at my disposal and within my grasp. We would not have been able to have James for the short time that we did without their amazing work.

The next few months will be incredibly hard. There are so many things that have to happen before my physical self can revert to a semblance of 'normal' and they are things I hadn't thought I would have to have happen. There are a lot of questions that need to be investigated and -- we hope -- answered. We have opted for a post mortem largely because it is suspected that the underlying cause of this particular case might be genetic and before we even think of attempting another pregnancy, we both have to know those odds (seriously: how many pregnancies can 1 girl attempt?) because neither of us could bear to go through this again. Also, if the questions we get answers to can be of use to any other pregnant penguins who find themselves faced with the possibility of polyhydraminos or hydrops, and to the medical staff who treat hydrops, then the least I can do is help make that happen.

In my mind, as much as it hurt to let him go on his first sleepover, Fang has just gone on a very extended play date that involves a sleepover. With his great-grandfather Jinx, maybe. I envision fishing. And maybe a few chapters of Treasure Island which is what Jinx read to me one spring holiday a long time ago, just before he taught me to play backgammon.

Thank you to all of you for your ongoing thoughts and support. We are more grateful than we can ever express.

Rachel xx

Friday, 26 February 2010

The Western Front

Things will be quiet here for a while, kids. 

Thursday, 18 February 2010

Late nights are here to stay

Dear Fanglet

So, here we are: another day, another dollar.  Your father and I are almost through the complete series of The Wire, so heaven only knows what we'll move on to after that.  We've also been watching a great many Korean horror movies, but they are getting to be a too intense for me at the moment, so I think it will be back to 'Pride and Prejudice' for me. 

This week has been really low-key.  We've gone to the library, the garden centre, Crouch End to go for a short walk up the high street with your Auntie E, and today I ventured into town to have lunch with the nice woman who has been filling in with me whilst I've been out ill.  In every instance, I have had to come home and collapse like a limp rag which leads to me believe that a) perhaps the lovely Miss Govind at North Mid was onto something when she said I should be resting; b) All those years I didn't sleep are catching up with me; and c) we really need to train Josephine to NOT lay right across my legs.  They impede my ability to go to the loo.  The trip into town for lunch today had me down for the count for about 4 hours.  The downside? Now I can't really sleep.

In other news, I was put on a course of 'new' antibiotics tha I would say have only slightly worked.  Plus, they make me slightly nauseous, which is a bit rich, given that I often already nauseous.

On the other hand, you're busier than I have felt you being in a while (I guess that Olympic size pool wasn't as soon as we thought), so I won't whinge too much.  Now that we're at week 31, I kind of feel like any discomfort I have that doesn't involve a high protein count or draining fluid out of my uterus is par for the course.  I'm also kind of waiting for the whole nesting instinct to kick in, because the house is a bit out of control for my liking. 

Tomorrow is our weekly appointment at UCHL.  The excitement is overwhelming, I know.  I can feel your little feet hammering on my ribcage in anticipation.

Monday, 15 February 2010

A sucker for packaging

Dear Fanglet

The theme for this week has been 'in the community.'  Wednesday, I crawled back to the GP with yet another Urinary Tract Infection.  I hobbled up the stairs (amazing now how quickly these infections go from 'Ouch,' to 'Oh, my freaking god, I think am dying') to yet another a duty GP (as it appears my own GP is on the lam) who spend a good 40 minutes chewing her lip and asking me a slew of inane questions, all of which she could answer herself by READING THE FILE I had given her.  She grilled me as to why I'd been given such a range of antibiotics (you know, because in addition to being a trained archivist, I'm also a pharmacologist) and as to why the infections keep coming back.  The sample she took was. . . unpleasant. Full of icky things that could lead to another stint in the Ante-Natal unit.  She then hemmed and hawed over whether she should call the Registrar at North Middlesex.  'I mean, I just don't know if we can treat you in the community.  I don't know what medication to give you and well, you really don't belong in the community with this kind of infection.  You should be treated at Hospital.'

I was tempted to ask if being treated in the community involved an animal sacrifice or a prayer circle. Because, to be honest, I'll try pretty much anything once.  Except Class A drugs. You know, being pregnant and all.  So we went back to Hospital, they took another sample, and the nice midwife gave me this great painkiller that left me feeling incredibly generous towards my fellow man. We were released a few hours later on our own recognizance.

On Friday we schlepped over to Great Ormond Street Hospital to see our favourite team of Cardiologists, which led us back to UCLH to have some fluid removed.

We went to Great Ormond Street on Friday and Dr Sullivan was not very happy. And I was not very happy -- having expanded even more and my stomach having gotten incredibly tense-- and Fang, well, Fang was most certainly not happy and was having to work much too hard to breathe. So, after our scan, he told us that he wanted to send us back to UCLH in the next hour and have them get some of the fluid off, especially as the baby had developed hydrops (which can be caused by many things) and the hydrops looked as though it was getting worse.

So, we grabbed some lunch and went over to UCLH where my new OB said she wanted me to meet with their head of Obstetrics and the head of Paediatrics, so they could explain what we were looking at. I won't go into that right now because I'm not ready to think about it, but I get my own paediatric team of 5 people when I go into labor AND the OB staff. Who knew I'd be having a party?

We have a new book we have to carry around (in conjunction with our other book) and some slick new packaging on 'Our Pregnancy Journey.' All very smooth and well presented. 

The 'amniotic drainage' was very exciting. They send you back to the bed where they do the scan, sterilize your stomach with icy fluid, then one Dr starts monitoring with the ultrasound gadget whilst the other looks for the best place to 'tap.' I was 'lucky' because the placenta and you were quite high, numb the belly so they had lots options. They stick a 6 inch needle -- very fine -- with a thin hose being guided in, and then they remove the needle and start draining into very nice glass bottles.  The fluid -- which is essentially baby pee -- is a light blonde colour, like a wheat beer.  It takes between 20 and 30 minutes and is more strange than painful.  I immediately began to feel better. After that, they strap you to table in the Maternity Day Unit and do a trace on the baby's heart beat for an hour, hour and half and monitor you for contractions.  We had a few contractions but they were mild and you seemed much happier.  And me, well, I can now kind of see my feet.

On Saturday, you're Auntie L arranged a baby shower for us. It was fun.  People brought cake and food and we played a few games and then I got to open presents that were all for you. Well, most of them were for you. A couple of them were for me, including GUESS HOW MUCH I LOVE YOU, which makes me cry almost as much as the CWDC commericals that are currently airing.  You know the ones. 'Its not just a cup of tea. Its a tool we use. . . ' We waddled to the shower, where we gossiped and chatted and ate until I couldn't move, then came home to dig into season 4 of The Wire.

It was a good day.

Tuesday, 9 February 2010

A defense of socialized medicine and the NHS

Now, for all of my griping and complaining and snarking at the medical professionals I've encountered during my pregnancy, I'm going to take a step back and be objective.

I know. I think Hell just froze over.  We could go sledding down there.

Throughout the course of my pregnancy, the only thing I've had to pay for are the pregnancy tests (and I took about 27. I'm kooky like that).  With the exception of the urinary tract infection fiasco and the maternity ward thing (hard to overlook the latter, I know, but I do believe that was down to individual midwives and not indicative), I have had quite comprehensive care.  I have been referred through for tests and prodding with a speed that has left me breathless.  If I have one major complaint about that it is that I don't always feel we've had an accurate explanation -- in layman's terms -- of what the procedure or test is for nor have we been given time to make a measured decision. The latter complaint  may have more to do with the fact that many of the decisions have required we choose then and there.  I've made the decisions (with consultation and participation from my partner, mind) with firmness, in an attempt to clamp down on trepidation and fear.  Bizarrely, I've taken on the hard edge I would normally associate with the people in the Service I watched growing up. By the same token, my intolerance levels have also gone up.  I don't want apologies or excuses for things that have gone wrong; I don't care if you're understaffed and struggling: they've got a job to do and by all that is good and right and just in the world, do the job, fulfill the misson. I want assurances and proof that they aren't going to go wrong because of carelessness again.

I do not think that treating patients with blinkers on is an NHS-trait. I think it is a medical professional trait. Not all, mind you, just enough egos in a room together to cause confusion. I've heard horror stories about health care in the US, Canada, Sweden, Czech, and it almost always comes down to human fault or incompetence and a breakdown in the process.  A few years ago, I wrote a series of essays for a Mental Health Trust in Enfield. The essays are here.  5 Years later, I stand by everything I wrote then. 

I pay my taxes, I work hard, and I do sometimes feel a bit livid when I see people abusing the system.  But by the same token, there are people who need assistance, who need help, and who need medical care and would die without the NHS.  If there is one fear I have for the NHS, it is that all of this PFI nonsense is going to send it into a tailspin and that private healthcare -- healthcare for the few -- will be brought in as the way forward.  Private health care is an option I am fortunate enough to have (not for everything but for enough) and I won't lie: I've used it.  And it wasn't bad.  And my treatment was expedited.  I just don't want people to read about my experience with a very specific hospital environment and think that all socialized medicine is mistake.  Nothing is perfect. But I am very conscious that in the US, we wouldn't have been able to afford any of this care.

Monday, 8 February 2010

Hot Potato

So, there will be a series of small posts over the next few days, but the most pressing (in my mind) is how I've become a hot potato.  I've been 'signed off' work for 'rest' (as ambiguous and undefined as it sounds. Not 'bed rest' mind, just 'rest') and as a result my work has decided (if I am objective, I say, rightly -- to a degree) that having me on site without further clarification other than a circled option on a statutory form.  I, too, would like clarification. The irony being that the Doctors are happy to have me run from hospital to hospital with nary a concern for how I get there but at the mention of sitting at my desk they get all broody and 'oooh, yikes. We couldn't possibly make a claim about working; you need to negotiate that with your management,'  to which management replies 'oooh, yikes. We couldn't possibly allow you to do ANY work with out further clarification

Because, you know, keeping a woman trapped at home and allowing her out only to tell her you now think there is something DEFINITELY wrong with her child is a great way to keep her sane.

Quackers. The world has gone quackers. And the wallpaper? It is indeed yellow.