Archive for May, 2009

Gestating an elephant

Wednesday, May 27th, 2009

Jasmine and the big bump

Apparently, elephants are pregnant for 22 months, and at the moment it feels that I have been pregnant for that long. And to add insult to injury, Neil’s friend’s girlfriend had her baby on my due date. Congratulations to Sarah and Pete, Sophie looks beautiful.

My birthday has been and gone, although I was sure I was going to go into labour that day because the day before I was cleaning everything in the flat. The whole place is spotless and Neil said that there is nothing left to clean. Even behind the fridge is very clean.

I had a lovely birthday and we went and drank a sneaky glass of champagne on the grass as it was hot and sunny. Thanks to everyone for all my cards, presents and birthday wishes – very much appreciated. Jasmine picked out a 15 feet ‘Happy Birthday’ banner for me as it had all of the cast from ‘In the Night Garden’ on it and she recognised them. We have it wrapped right round our living room. It is brilliant.

So, we are just waiting now. Unfortunately, as I had that really bad cough for weeks, I pulled the big muscle (intercostal) under my left rib so had difficulty breathing without pain. It was just healing up nicely, when I had to climb over dialysis boxes in the middle of the night to get out of bed and I ripped it again. It really hurt. And then I went on my big cleaning frenzy and walked for miles each day as I had lots of energy and was having trouble sleeping, but didn’t realise that I was overcompensating so that I wouldn’t hurt my left side and have managed to pull the muscle in my right lower back. As it sits on a nerve, everytime I stand on my right leg I get a shooting pain up and down my whole leg and it is very difficult to walk.

I managed to set up the dialysis machine yesterday evening and then walked crab-like leaning on the wall to the acupuncturists round the corner to see if she could do anything for me. She stuck some pins in it which has eased it a bit today but the pain was excruciating on the way home. I thought I was going to stand in the street and cry and embarrass myself but luckily I bumped into a neighbour – the poor thing has a hernia – so we walked back together, very slowly, moaning. He was funny as he hadn’t noticed I was pregnant.

Normally, I get spotted for miles around as the pregnant woman and have middle-aged women rushing up to me in the street saying, “Oh you’ll have your hands full,” as they gesticulate at Jasmine in the buggy. The day we heard it four times when we went out looking at double buggies, Neil got really cross. I actually said to the last woman, “You don’t know the half of it, love.” As I was feeling a bit cheeky. The other day some woman asked me when I was due and I said, “Tomorrow.” She said, “Oh no.” I do wonder how some people get through life with such a cheery attitude.

Neil is a star and took over dialysis this morning and said, “Look at the clip of you.” He has a point! It would be funny the way I walk, if I wasn’t in such agony. The doctor, when I went for my antenatal appointment yesterday morning (Jasmine in the buggy so I had something to lean on to help me walk normally) recommended paracetamol, as there isn’t much else a pregnant lady can safely take, but I haven’t bothered since paracetamol doesn’t do a great deal for me.

I have been contracting away at night and then it stops after an hour so now I just go to sleep and think: ‘Whatever!’. We just have to be a bit patient, but please pray for me as the hospital only give you 12 days as a VBACer, before they give you a c-section. I know whatever happens it will be the best for the baby and I, but it would be much better dialysis-wise if I could just have a natural birth and the thought of not being able to pick Jasmine up for six weeks makes me cry.

We have tried all the old wives tales to bring on labour. On one list on the internet it said foot rub which Neil gave me and then asked if the next thing on the list was something like ‘Get husband to paint the kitchen/do the ironing/go shopping’, which made me laugh. The other thing that makes us laugh is all the twinges and symptoms I keep getting, as according to the pregnancy book, labour is imminent. So anytime anything happens we say, ‘Oh labour is imminent’. We have started saying it to Neil too whenever he gets any symptoms, e.g., needing to go to the toilet, as they are so generic they could apply to anyone.

Jasmine is great fun at the moment. She knows where her nose is and touches it when you say ‘nose’. I tied a belt to the babywalker yesterday afternoon and dragged her round our communal courtyard as she was bored being in the flat and I couldn’t really walk so we went and sat out there. She was a bit confused at first but soon got the hang of it and we had fun – me dragging her forward and Jasmine pushing herself backwards and laughing.

Whilst we were out there, another neighbour asked me if I was afraid being on my own so heavily pregnant, unable to walk properly, and with a young child (she had had to hold the door open for me for quite a while whilst I crab-walked sideways dragging Jasmine in the babywalker through the doorway). People are so funny. Neil would have found us in the courtyard on his way home.

Jasmine has hit another milestone – six months without an NG tube. Our consultant at Gt Ormond St congratulated us and said that it was a fantastic achievement, which was really nice of her and it makes me cry just thinking about it. I guess I am a bit hormonal today, perhaps labour is imminent (Grrrr). Or, it could be just that the Boro have gone down and I am very sad.

On the grass

Neil: A successful clinic

Tuesday, May 19th, 2009

We had another clinic at Great Ormond Street on Monday. It is hard to believe that it is four weeks since the last one. That means that it is also time to do the stock take for the next delivery of dialysis fluid. Everyone was disappointed that we didn’t bring another baby with us. Ruth is VERY pregnant now!

Jasmine is still growing at 50g a week, slow but steady. Her bloods are generally ok. Her haemoglobin is a bit low so we are going to increase the epo dosage. Epo only comes in certain quantities, and is expensive, so we aren’t going to give 1500 units a week, but 1000 one week followed by 2000 the next week. That will save her from having separate 1000 unit and 500 unit injections. She is still too small to have the semi-automatic pen, and has to have a subcutaneous injection in her leg.

Jasmine’s cholesterol was high on one set of blood results, so next time she has bloods done we have to make sure she has no food for four hours before. We will give her some water though. Otherwise her blood is very thick and it is painful to get a sample.

The consultant said that we can start to think about transplants a bit more definitely and Jasmine should be able to be transplanted before the end of the year, which will be fantastic. There is a long way to go yet though.

Neil: Transplant registrar

Friday, May 8th, 2009

We had a trip to the hospital to talk about live kidney donation. The surgeon was still in theatre, so we met with the surgical registrar. We went through all the standard questions again, just to be sure. It is good that I don’t smoke and am not overweight.

Though my Glomerular Filtration Rate (GFR) is below average for my age at around 85, it is not that far below (98 plus or minus 39, from Epstein 1996). Although kidney function generally decreases with age in many cases it may stay constant for many years.

We got to see the results of my CT scan on the computer, so I had a good look at my liver, stomach, kidneys, intestines, etc. They all looked OK to me, and thankfully they all looked OK to the doctors as well. By this time Jasmine had got bored and was singing away loudly to herself, so Ruth took her back to the waiting room.

There was a woman in the waiting room who had donated her kidney three weeks before. She looked pretty well, so that was encouraging. She was showing her scar to the receptionist, so Ruth had a good look. Ruth tried to ask her some questions, but was too upset at the sight of a scar, even though it was nice and neat.

The surgical procedure would be to use key hole surgery to extract the kidney. The plan is to take the left kidney, as the ureter is longer. The artery and vein are sewn shut with titanium. They use multiple stitches instead of a single clip, so it cannot pop off.

The registrar went through the possible complications. Most common is excessive bleeding, at five percent, requiring a blood transfusion. In one case in a hundred the bleeding is so bad that they have to change from key hole surgery to open surgery to stop the bleeding, which would significantly increase the recovery time. One in 3000 cases they miss some bleeding and you have had it….

Then there is intra-abdominal infections. Physical injury to the bowel, spleen, etc. Most of these can be corrected and will be apparent while in hospital. Chest infections and urinary tract infections are also possible. A hernia may develop after leaving the hospital.

The surgeons seem to think it is fairly routine, as they do the surgery all the time. That is reassuring, but at the same time they have to tell you about all the things that could go wrong, which is not reassuring at all! As Jasmine is so young she needs the best chance of a transplant that will last a long time, and a cadaver kidney is unlikely to last as long as a live one. And you can only have a limited number of kidney transplants before you run out of plumbing to attach things to. Jasmine needs the best kidney as soon as possible, as one of our doctors said, “Jasmine needs a transplant as dialysis shortens your life…. Well, transplantation shortens your life too.”

Home – One year today

Thursday, May 7th, 2009

Jasmine and Ruth at home

Jasmine came home one year ago today. So, today we give thanks for the wonderful people who look after us so carefully at the hospital, and for all the amazing equipment we have at home which allows us to tuck Jasmine up in the cot next to us every night.

Things may have been a bit tough but I wouldn’t swap a minute of it. Jasmine is smart and beautiful and we love her.

I had several contractions the other day and was convinced I was in labour. It felt very real. So, I ran about the flat saying that I wasn’t ready, and was quite glad when they wore off after an hour. I have a new mobile phone and haven’t quite got the hang of texting on it yet so when I texted my doula to say I was having contractions but wasn’t sure, was it Brackston-Hicks? She got a message from me saying, “I have had some crack”. She was slightly alarmed. I didn’t have any false labour with Jasmine so this is all new to me.

I packed my bag that evening when things calmed down. And now, I am ready to have this baby and am quite excited, albeit a bit sad that Neil and Jasmine won’t be there. I still have a rotten cough, and Jasmine is still full of cold and was snoring so heavily in the cot last night, but in a very cute way. I got my chest checked at my last doctor’s appointment. All clear, thank goodness. Jasmine is looking really well and her vomiting is right down, which is brilliant! But we keep peering at her wondering what is going on. She hasn’t vomited as little as this for a long, long time. Neil is his usual wonderful self – a bit tired with all the extra things he is now picking up, as I find I am needing a bit of a nap in the afternoons, which then makes me a bit restless and chatty at bedtime, which he can well do without when he wants some sleep.

Tomorrow we are off to see the transplant surgeons and talk about Neil’s spare kidney, so that will definitely bring on labour, but luckily we will be in a hospital. I am always impressed with Neil and am thrilled to be his wife, added to that now, I am in awe of him and his desire to do his best for Jasmine.

We have found a new use for all our spare dialysis boxes. Jasmine loved being dragged about in it yesterday and squealed with delight for over an hour. We are wondering if we can fit the new baby in one, as things are pretty snug in our flat.

Jasmine in her dialysis box

Back from the hospital again!

Sunday, May 3rd, 2009

So much for turning the corner. I was disconnecting Jasmine this morning and the catheter slipped out of my hand and dropped into the cot, leaving me holding the cap which is supposed to cover the dark blue part of the catheter which no one is ever supposed to touch, and it was there open and touching the sheets. I picked the catheter up and for a split second (which felt like forever) I stared at it. I was so stunned at this outcome that I didn’t know what to do. Luckily, Neil was there and said, “Put the cap on.” So I did.

Then we rang the ward and went down there. The lovely nurses took a sample from Jasmine’s peritoneum and sent it off for testing. Luckily, the white cell count came back as seven, which is great and we came home with two nights of bags full of antibiotics.

Actually we pushed the buggy full of dialysis fluid round to PizzaExpress and we had our lunch. And as Jasmine’s temperature had been higher than it should have been on the very hot ward (37.9) during her observations, we took her temperature again and rang the ward to tell them it was all normal again (37.2). After that and a big nice pizza, we got a cab home.

We were so lucky. I am so cross with myself. But as Neil said, if he had done it, I wouldn’t have been angry with him. He certainly wasn’t angry with me. We are so hard on ourselves, and I am trying to forgive myself. Anyway, at least Jasmine is fine. We got her checked out and we have antibiotics so that is good.

Turned the corner

Saturday, May 2nd, 2009

Jasmine in bed

These past six weeks have been the toughest since we brought Jasmine home from hospital. She has been ill a lot, which has been scary at times. And we have been ill too, which has been exhausting, as it is difficult to do all the things we need to do on a daily basis. And at times I have wondered how we could possibly continue.

Jasmine is doing a lot better but still has a chesty cough and lots of mucus. We have been putting Vicks on her chest and giving her the odd bit of Calpol. Neil is feeling much better but says that I am a bio-hazard at the moment as I just can’t shake off my cough and I have missed out on lots of cuddles because of what I can transmit. I am so tired of the neti pot and salt gargles. But, I am really good at coughing as I have been up quite a few nights practising.

Today though, I picked her up as I just wanted a cuddle and Jasmine put her hands on my face and kissed me. It was just lovely.

Thrilled as I am to be pregnant, I would not recommend being eight months pregnant and doing dialysis. It is just too much. Neil is a total star all the time, but dialysis is too much for one person, especially when he has been really ill too. We are a team.

I have been quite lucky and managed to avoid the symptoms in the pregnancy book, but the other day I had terrible back pain. It was right under the bone of my right shoulder blade and during a three-minutes handwash would get very, very sore – like a stabbing pain. But, clean hands after three minutes of scrubbing them focus the mind and make it possible to ignore any pains. Anyway, I was sure it was back pain. So, I looked it up on the babycentre website, which made me feel worse: It said that it was stress-related back pain or some horrible liver complaint or I was in early labour, blah, blah, etc. Anyway, after much ado and Neil sensibly getting involved (well apart from when he asked me if I was getting washed enough and was I changing my bra regularly. How rude!), it turns out that I have a spot (a spot! I don’t get spots) and it has been rubbing against my very unsexy maternity bras until the pain gets unbearable. It was not back pain at all. So, now that it has sudocrem on it and is stinging, I am so relieved. I still have a bit more yoga, kegel exercises and positive visualisations I would like to do in preparation for early labour.

So, today I feel like we have turned the corner. Although, to be fair I have said that every couple of days for six weeks through all the long nights, and extra blood tests, astronomical amounts of vomiting, and piles of washing everywhere. I have said it so often, I am sure Neil has wanted to strangle me. I know I would have done if I had been him. But Jasmine’s bloods have started to return to their ‘normal’ levels (of chronically sick child) instead of the frightening levels they were at before. And she has put on a little bit of weight. And today we got the vomiting down to around 1/10 of her daily feed, which was just amazing. This has involved an exhausting feeding schedule of every two hours and a bit of a struggle, but it has worked. We are both a bit fed up but it has been worth it.

Yesterday, we had a delivery and normally I would be moaning about the slot as it was 12.40 – 16.40 but I just didn’t care. I am just so grateful that we get deliveries and that Jasmine’s dialysis hasn’t needed to be changed. We have finally had the time to enjoy the fact that it is down to 12 hours each day. It makes life so much easier.

The lovely Baxter delivery man came early so we got the chance to go for a walk and so we wandered off to the Arsenal stadium and went and sat in the ‘E’ of the Arsenal sign as it provided lots of shade.

In the E

Today, as part of getting a bag ready for the hospital, we got out all the old baby clothes which we have washed and put away and I cried a bit as they all brought back so many memories. I kept holding up the tiniest things against her as I can’t believe how she has grown. She tried to chew them all of course and really didn’t care.

Jasmine’s latest thing is to shout ‘Mam’ everytime Neil leaves the room, which is really funny. She also has three molars. One of the top back ones looked all full of tooth decay the other day and I was having a big stress, but after a bit of research I found out that some baby teeth come through in a sack of blood. So, that was a bit of a relief. Today, the ‘tooth decay’ has disappeared – well almost, so that is great! I was having visions of trying to get her on a dentist chair and really I didn’t like them.

We have got Jasmine a toothbrush, but she finds the whole thing a bit confusing, although when we brush our teeth (and when the Tombliboos in The Night Garden do theirs) she thinks it is rather funny.

When you chat to Jasmine she laughs politely when she thinks what you are saying is funny. I don’t know how she knows when to laugh but she does (amazing, some people never learn appropriate reponses – my girl could be a diplomat). And she only does it when it is something funny. And when you feed her on a night and she is half asleep and you put her on your shoulder, she pats your back to get your wind up.