Mood diary/letter to myself

Met with Henrietta again today and want to write this now (in the afternoon) before I forget what I need to tell myself.  My baby, Ellie, is sick. I love her more than anything but I cannot change what is and I am not the first person to go through this.  Henrietta is right, I need to not go looking for the information, the numbers about this disease, etc on the internet. The doctors know what they are doing and I have to trust them, despite being out of control. I can’t help Ellie the way they can, I am not her doctor. I am her mum and all she needs from Lee and I is love and unconditional support, whatever the outcome.  I can’t support other women in this, at least not now and their stories, their experiences are not ours. The science may be the same, but even if exactly what happened to their kids happened to ours, the experience is different. I am Naomi, Lee is Lee and Ellie is Ellie. We are our own people, with different strengths and personalities. These women have given me a lot already, which is hope. They can’t change my fate, just by giving reassurance. I have to look to the RVI to help us and if they can’t, they tried. I know they will do everything they can.

How can I help Ellie? The truth is, all I can do is love her and talk to her. I can eat properly and sleep and help her to grow, hope that she is strong. I can be her advocate and fight for her and if she can’t fight. I can hold her until she falls asleep for the last time. Grieving now will not help because it is causing pain that doesn’t exist yet. She may not die. I will continue to cry and be scared, I will have to think about births and funerals but death for her is not a certainty so I need to remember that.  Her life is not guaranteed either but I will NEVER regret her. What I need to focus on is the pleasure I have had from her so far. I can’t always do that but I will try. Our lives will be hard either way. With Ellie, we will always live day to day which I am slowly learning to cope with. Without Ellie, life will go on and I will never love her any less but I will grieve and then my life will have to continue and I will tell our future children about their sister and how amazing she really was. To waste my life in self pity if Ellie lost hers would be wrong, her life should be celebrated, however long it is.

Don’t focus on future children. We will try again but I am 23. In the worst case scenario, Lee and I will lose Ellie but we will have one another and she will always be a part of our life. Before I focus on future children, I need to know the outcome and if death is the outcome, I need to grieve, to travel, to return to normal life, to study and to be me. The me that used to sing, and play piano, and enter silly charity competitions at the golf club, and go to the gym. I will still be Ellie’s mum, even if she isn’t here with me but I am myself too, and I have forgotten that through the pregnancy and forgot who I am. I will never be the same person, but I will be stronger and if Ellie cannot be here, I will do everything that she couldn’t so it wasn’t for nothing.  Even though trying again will be hard and we have obstacles most couples don’t, even though we are ready for a family, we have time and I need to prepare myself for the emotional implications. I will still be young at 25 or 26 and much stronger after a year or two of Lee and myself just being us. Another child will not replace Ellie but it is important not to jump too quick to try and have the baby we lost because that won’t work. We need time to adapt, so that another child can be love for themselves, and not just to fill a void.

I need to help myself too. I am almost used to no structure now but I need to concentrate on positive things, doing German work, playing piano, singing etc. Ellie can hear when I sing, it’s good for her and she likes music. We have 5 weeks left together and rather than panicking about them being over, I need to make memories to take with me, just in case. I don’t want to look back and think she brought me misery and pain. It is a terrible situation but there are positives in it too because we have loved, love and will love her, she loves us and will love us and she has given Lee and I the kind of love and appreciation for each other that just doesn’t happen to anyone. Ellie’s life was never in vain, she was wanted before she was conceived, and regardless of the outcome, will be loved. While I need to not think about life without Ellie right now, I know there will be if that is what happens. I don’t want life without Ellie, nor do I want her to suffer in any way.  However, if there has to be a life without her, I won’t be alone and will take comfort in the love she has brought into our lives.

Ellie might die BUT she isn’t dead. Her condition is serious but things can be done. I am not weak for being scared, or for crying but for every time I cry and feel sad, I will make the time to be happy when she has the hiccups or kicks or moves so the disease doesn’t beat us. I will continue to be terrified because it is scary, but I will also be excited to meet her. I’ll write and take pictures so whatever happens I always remember how happy we were, through what was happening, to be her parents. Even if she leaves, we will still be parents to Ellie, forever. That can’t change now. Love doesn’t stop at death. We will talk about her, to family and friends, and Ellie’s siblings and her life will be carried forward if she isn’t here.

So, to remind myself: it’s ok to be happy and it’s ok to be sad. Don’t try and be strong for other people except Ellie, Lee and myself. We are our own family who needs to support one another. Others can support us and we will be thankful but for now, we need to almost be a bit selfish and think only about the three of us. If I need to cry, that’s fine but take pleasure out of Ellie’s life, while she is here. Don’t convince yourself she will live or die, just be prepared that death may happen but hope is still there and nothing is certain. We just don’t know. Trust the doctors, and don’t try to analyse kidney sizes, operations, statistics, etc. Ask the doctors questions about things they know, such as what will happen immediately after birth but don’t seek reassurance they can’t give yet because it will make you feel worse. Prepare for the birth. There are other people to sort other events that may or may not happen. Do normal things, and try to enjoy the last month of pregnancy with this wonder baby. She is fighting to be here so we have to do the same. Be her advocate and her mum, love her unconditionally but if the time comes when it is too much for her, know that we tried and she knows she was loved. Remember in six weeks, that today Ellie was happy and so were you when she kicked and you spoke to her and played her ‘Crocodile rock’ or something equally lame. Don’t grieve until you need to and don’t grieve for the pregnancy or baby you never had because they don’t exist. They never did and never will. Ellie existed, this pregnancy existed and for all the pain, the physical aspect has been easy and filled with happiness too. While other people focus on pram buying and nursery colours, we have been sitting talking to our child like she was here, telling her daddy is silly and mummy loves Kylie Minogue. That is what Ellie needs now, not a cot.

When life gets too hard, read this. Ellie is the ill one, not me. She needs us and what she has to go through is worse than anything Lee and I will face. She is our hero and our blessing and nothing she does will disappoint us. I need to look after me to look after her and take strength from that. If she survives, she will need you to hold her hand and sing to her through dialysis and all the other nasty things. She will need to know we will do anything to protect her.

We are scared but there are good things in life, we are not bad people or being punished and Ellie is proof of that. Other babies have this too and she is not paying the price for anything we did. This is nature at it’s cruellest and that is the sad fact. Ellie is a blessing, not a punishment. Ellie is the best choice we have ever made.

Make the world go away

Today has been another of those days really. Stayed in bed until 11.30am then Lee came up to check on me because he was concerned, bless him, so I thought I should get up for him and to feed my baby too.

Yesterday, we had taken my bro's girlfriend to the Civic centre in Gateshead for lunch as my stepdad is head chef there, then Angel of the North, the Sage Gateshead and the Baltic Art gallery. There were some books that were brilliant for the baby in the Baltic shop and when my mum asked if she should buy one, I said 'Well, I don't know. It seems like we should wait' to which she agreed and took the names of the books so she could get them online at a later date. She told Lee it was because they were expensive in the Baltic shop then texts me later at home to say she bought them both. Do people not care how we feel? It wasn't about the cost. It's ok when you have four kids, you are bound to have a healthy grandchild but will I ever have a healthy child? I don't know. This is my life, every day I have to think about Ellie's birth and death at the same time. People think because I go shopping and meet friends, etc. that I am normal, coping so well, blah blah blah. I'm a mess. What do people want from me? Stop pretending things are fine, my baby is seriously seriously ill. I feel like I'm shouting at everybody and no-one is listening to me. Every minute of every day, I worry about facing people and their babies and children, pregnant women happily buying cots and baby clothes and planning their lives. Everyday, I have to get up and face them all and have it rammed down my throat. Our throats, Lee's and mine. I hate it. Really hate it. I would give up both my kidneys and take the dialysis if I could so Ellie didn't have to.

Been doing some German anyway, putting some music on my Ipad, trying to forget. Still can't believe I did so well in my last German assignment, thought I'd done better in the first one. Gotta keep it up!

Here's some pics of the Quayside, Angel and Lee and I. I look rough in all but it had been a long day and I kept getting caught off guard.

For Lee ( courtesy of Peter Gabriel)

In case people wonder, I often use lyrics to explain how I'm feeling because music is my life. For me, I know how much I love Lee just by putting my cheek to his, and I wouldn't have coped this far without him. Other people say it better than me though, hence the lyrics. There's nothing better than a song that moves you in the way this song moves me.


The Book Of Love lyrics

The book of love is long and boring
No one can lift the damn thing
It's full of charts and facts and figures
And instructions for dancing
But I,
I love it when you read to me
And you,
You can read me anything.

The book of love has music in it
In fact that's where music comes from
Some of it is just transcendental
Some of it is just really dumb
But I,
I love it when you sing to me
And you,
You can sing me anything

The book of love is long and boring
And written very long ago
It's full of flowers and heart-shaped boxes
And things we're all too young to know
But I,
I love it when you give me things
And you,
You ought to give me wedding rings.

Busy days

I was out all day today, a change for me who normally sits round on the Ipad. I met up with my friend, Michelle, who lives in the same town, but I haven't seen her in a long time. It was great to catch up on everything, and bless her, she had bought me chocolates and a card, to say her and her boyfriend and son were thinking of us. She cried when I explained about Ellie, I wanted to hug her to make it go away, would you believe!

Took my bro's Aussie girlfriend out and about to see the Treehouse and Castle in Alnwick, a drive round Alnmouth and to Barter books. We also had dinner at Newton-on-the-moor, which was lovely. I'm quite tired from all the driving now though. Going with her, my mum and my nan to the Angel of the North tomorrow, and to my stepdad's place of work for dinner,

Got my German assignment back today online. My 2nd one, and I did awesome! 85% in the first one, 92% in this baby! How good am I!

Starting to get so big my belly button is going to pop so Lee is rocking backwards and forwards in the fetal position in the corner haha. Here's some pics of our journey so far.

Bambi pics were at 21 week scan. Obviously not so clear later on with less fluid but we don't care. The ones we have are the best pics in the world to us.

Totally drained

Been to see Henrietta today (psychologist) which is exhausting.  We discussed quite a few things including my fears (are the doctors giving false hope, Ellie dying before I get to see her, the C-section, etc), my depression quiz, holding things back, etc. We decided this week I had tried to be too normal, resulting in me having a mini breakdown in bed last night. So for homework, on my mood diary, I also have to write a section about what hasn't been said that day, what has bothered me etc but we also think it's better if I need to to just sit and think/cry/ whatever for 10 mins a day, rather than going all week and making things worse.  We also said that as far as the different doctors opinions go, American healthcare is not as consistant because it is private. Doctors don't always know about this disease. In the UK, we have a very well connected group of professionals through the NHS, and in essence, it is a level playing field. The care at the RVI is no less than the care at Great Ormond street and knowledge tends to be the same or near enough. We decided I would discuss the death fears with the neonatal team but also, Dr Ognjanovich seems confident of her lungs at this point in time.  My score on the depression test I took was 14 out of 36 so while Henrietta said normal pregnant women are expected to sit around the 8-9 mark and she is concerned, she also feels I am doing really well. The problem is my head is so far ahead of my heart because I am intelligent and can process the problem, but essentially, I am still Ellie's mother and that won't change. I will also feel that pain so to not try to be too strong.  I explained to her though, I would never be a major concern on that level because I will never feel like there is no hope in the world, or life is worthless. I have always liked life and Ellie has given me so much more appreciation for this. How could I waste my life when Ellie has to fight for hers?  We probably discussed a bit more but it is overwhelming and exhausting.  One other point was, although ARPKD parents need to rally together, don't get upset for Ellie by what happens to others....every baby is different and I know this is right. It's hard not to hurt for all the other parents though when I know what they feel.

Apart from that, today has not much to report. I think it's a bath, pj's and junk food on the sofa night!

Confusion

I met another pregnant ARPKD mom, Andrea, on facebook and sent a message to a new one today who I know has already connected with Andrea and Michele Karl. Neither of these pregnant moms has been given any hope, which I don't understand. How can my doctors be so hopeful for Ellie's lungs being formed having had fluid for so long at 28 weeks yet Andrea has been told even with 2cm left at 34 weeks, there is no hope. Are my doctor's wrong? I look at Stephen Schwartz and I'm inclined in think there is hope for Ellie but now I begin to doubt what is said.I know there will be some underdevelopment but I want them to fit for Ellie, ventilators and all until such a point as it wouldn't work. I won't let her just die and I know the doctors at the RVI won't either. I have been told by four doctors, her lung measurements seem normal/not out of the ordinary and so, while the fluid isn't there to develop the insides of her lungs, the main content, size, and formation is there. Is it the other doctors who are wrong or mine? I'm praying that it is the other ones.

Went to an Ann Summers party on Friday night, that was a bit crazy! Ordered a new bra set for aftermEllie arrives, and bought Lee a t-shirt. Then last night, my friend, Rachael! Cooked for Gail and I and it was lush (and healthy woo!) so that got me out for a bit. I am at the psychologist's tomorrow at 1 so I'm sure it will be helpful.

I feel like thenhope I have raised is depleting. The people I have met on the yahoongroup are so supportive and keep getting in touch to offer hope. It's just, which doctors are right? Maybe they are giving us false hope at the RVI.

Renal letters and CTGs

Had to go to the RVI MAU today as bumpzilla refused to move. I was on the full hour and criteria still wasn't achieved but there was a spell where I pushed the button and awful lot so they deemed us fine to go home. Then I went to an Ann Summers party tonight that got raucous....that certainly woke her up. Lee just bumped into me by accident and freaked out so I put the doppler on to calm him which she kicked off. Needless to say, I think she's fine, little git!

Our first renal letter came today which I will share. It's not too scary and sometimes reassuring actually!

Dear Naomi and Lee,

I met you in the fetal/renal clinic on the 17th Dec, 2010. It gave me an excellent oppurtunity to discuss with you the baby's ultrasound scan, possible diagnosis, post-natal treatment plan and long term prognosis.

Firstly, I informed you that the baby's kidneys look big and bright on ultrasound scan and there is no fluid around the baby. This ultrasound picture is very suggestive of autosomal recessive polycystic kidney disease. I explained to you that recessive means that both parents are fit and healthy but do carry a wrong gene. For one to get the disease, s/he had to inherit the two wrong genes (one from each parent). Poly means lots and cyst is a balloon like formation in the tissue. Usually after birth these children do have large kidneys, which can easily be seen or felt.

I understand from Dr Sturgiss (fetal med consultant) that your previous ultrasound scan did show the presence of fluid around the baby. Now at 28 weeks gestation one shouldn't expect the baby's lungs are affected. You might remember that for lung development the baby needs to breathe the fluid, which, in essence, is the baby's own urine. Immediately after birth, one might expect some respiratory problems but we do not envisage it to be severe enough to warrant a respiratory support (note from Naomi: I think she maybe will need some help but her lungs and chest do measure normal).

Regarding kidney function, I commented the baby may need kidney replacement treatments (dialysis). I explained peritoneal dialysis to you, how we do this, and mentioned that at this age and size, peritoneal dialysis is the best treatment option, but certainly associated with complications such as infection. I told you that feeding could be a problem in children with renal failure. I briefly mentioned kidney transplantation.  You understand a child will need to reach a certain size (weight above 10kg) to be able to receive a transplant. I mentioned that both of you can be potential donors and explained that kidneys from live related donors do better than kidneys from a deceased donor.

you understand that polycystic kidneys are associated with hypertension (high blood pressure) and sometimes a child will need more than one blood pressure medication to have good controlled blood pressure. I also mentioned that sometimes we decide to take the kidneys out in order to control blood pressure. When we discussed genetics I explained that you are both carriers and you questioned what the chances would be for your next child to inherit the same condition. You might remember my drawings which explained that one in four children is healthy, one in four is affected and two are carriers. You also understand that the liver is affected in this condition.

Finally, I told you about the prognosis in patients with ARPKD and informed you that about 70% survive the first months in life. The biggest problem at this time is the undeveloped lungs, which we are not expecting in your child. All children who survive the first year of life, about half of them will be alive at 15.  I offered you to meet a family of a child who is already on peritoneal dialysis, which you accepted. One of our renal nurses will contact you and arrange the details of this.

Yours sincerely

Dr M Ognjanovic
Consultant paediatric nephrologist


So, all in all,  pretty confident about her lungs but I do think she will need help still. Made me feel better through the day though that doctors have some confidence in Ellie's respiratory ability!

Move baby move

Ellie has this trick, she will kick once or move a Tony bit then not bother, until I'm forced to pump music in there. She has been playing that game today. It's like she knows it winds me up!

For someone with no social life, I'm very busy from this weekend until Tuesday, with various things. It will probably do me good I know. I feel like I've aged 20 years in this pregnancy, hard to believe I'm still a bambi myself! Better to be young and deal with this though while I am young and fit and able. Plus now I have psychological help as a release, which actually doesn't help with my new issue.....breathing. Talk about fatty baby!

Lee and I took my brother and his australian girlfriend who is visiting for dinner yesterday. They have been totally rude since she's been here, barely bothering to socialise with anyone and being ignorant at my mum's house. They never bothered to say thanks. When Lee's parents or whoever do stuff for us, I would NEVER dream of not saying thank you.
Thinking I will commence my jewellery as an etsy project but not until after Ellie puts in an appearance. I've also been in touch with Sasha Ban, world's best nursing lecturer and loveliest person ever and she would love for me to do a talk in her children's nursing module during the renal lecture. It's quite a unique position for me as I have been on both the nursing side and now the parent side. That doesn't happen often.

Last night, in bed, I only had underwear on and we have wardrobes with mirror fronts. I just could not stop staring at this huge bump in front of me, it's really surreal. Every morning, I wake up and feel like Drew Barrymore in 50 first dates, because it's me but pregnant and I just can't believe I am due in 6 weeks. I don't feel any different but at the same time, it's amazing, I grew this baby that is in there. And I still can't believe there is a baby in there or that I have actually been pregnant all this time. It's so weird. I'm sad now though because the end is near and I don't know how it will turn out. I have this beautiful, perfect little girl in there and I can't protect her. I hand her to the amazing doctors at the RVI for that. All Lee and I can do is fight for her rights and in case of the worst, hold her and tell her how much we love her. But I think she will fight, these babies are so strong.

It makes me sad to see how all my friends bring their babies home and love being parents. Will we get to do that? There's just so many questions. I know whatever happens, people get through this all the time and we will be no different. I don't want a perfect healthy child though, I want Ellie. People with healthy children never seentheir children in the same way I don't think thought. They will love their child and do anything for them, but (and I envy them), they will take for granted the time with their kids in a way we never will.

I found an ARPKD group on yahoo with loads more parents which is great. Not to mention, lovely little Stephen Schwartz, the baby who has given us so much hope, is doing well still thou he has had a couple of rough days.

This is long enough! I leave you here!

For Ellie by Bob Dylan

When the rain
Is blowing in your face
And the whole world
Is on your case
I could offer you
A warm embrace
To make you feel my love

When the evening shadows
And the stars appear
And there is no one there
To dry your tears
I could hold you
For a million years
To make you feel my love

I know you
Haven't made
Your mind up yet
But I would never
Do you wrong
I've known it
From the moment
That we met
No doubt in my mind
Where you belong

I'd go hungry
I'd go black and blue
I'd go crawling
Down the avenue
No, there's nothing
That I wouldn't do
To make you feel my love

The storms are raging
On the rolling sea
And on the highway of regret
Though winds of change
Are throwing wild and free
You ain't seen nothing
Like me yet

I could make you happy
Make your dreams come true
Nothing that I wouldn't do
Go to the ends
Of the Earth for you
To make you feel my love

Getting fatter by the day!

Today has been alright, but I think I've calmed down a bit since renal clinic. I still get snappy and agitated easily but I guess it's all the not knowing. 

Had a GP appointment today with Dr Shiell, as she has heard nothing from the RVI, only knew about the whole kidney malarkey because my mother in law had had an appointment and mentioned it when the doc asked how we were so they are chasing up the info. She said I was looking really well and seemed to be coping amazingly. I said other women have been through this so I can do it and we have so much hope, even from fetal med doctors, so while we know she could die, we can't focus on it too much.

Ellie would not move yesterday, I jiggled her, fed her pop and chocolate lol, played Elton John's 'crocodile rock' in there. Nothing. Until about 4pm when I was getting ready to call the maternity assessment unit, of course then it was party time! Nothing like the threat of a CTG check to make her rock out!

My bump looks really big. Just been out for dinner so some is bound to be bloating but I have been sore today so some stretching is going on, plus the stretch marks starting give it away. I don't really care, I lasted ages without them but they will fade eventually. Plus I'm going to be covered up for a while til I can exercise to de-fat, which won't be until at least 6 weeks after the section, if not more.

Here's a picture of the ultimate Gonzo/MC hammer style pyjama bottoms that I have to have for my hospital stay lol. Not that loud really haha. At least the hospital will save on lighting!

Another day, another doctor

So I had my psycho appointment today, lol. Henrietta, the psychologist, is lovely. We talked about what had happened so far, ARPKD, mine and Lee's relationship and the support we have, my feelings of anger and sadness and fears, etc. She said I tend to veer between logic and realism and then emotion, sort of the nurse/medical knowledge and my head fighting my heart, the mother of Ellie and it's true. I have to go back next week and keep a small feelings diary for a week. She doesn't think I'm depressed though and I agree. It's just the fear of losing my child, which an parent in my position would have.

I ordered my kidney necklace, not sure if I wrote about it, last week and said. Would get my sister one for her birthday but had to order from America. My mum said why is there nothing like that in this country, and funnily enough, I was saying to Lee, if Ellie doesn't make it, I want to make a difference and if she does, I am going to be round the house and hospital a lot so I wouldn't mind starting my own Internet/Etsy business. Of course, first you have to find your product and I'm thinking bracelets to start with. I even have ideas for the designs and things and have looked at wholesalers. The next issue is marketing...can I get people to buy them, and how? How do I make people care? I need to look into it a little bit and start small if I decide to do it, but my mum, partner and sis think it is a good idea. Watch this space!

The past week has seemed so long, but I suppose I've been more down, after our appointment, even though omitting had changed other than kidney size.

I found a blog today though, a little boy, diagnosed at 18 weeks gestation and no fluid from 24 weeks. I was like 'SAY WHAT?!' the mum had 17 amnioinfusions for the lungs which we won't get as Ellie's lungs and chest size are normal, we had fluid in the critical periods, and the risks at this stage would outweigh the benefits I think. Anyway, he came 8 and a half weeks early, managed to go without his double nephrectomy until 5 weeks of age and his kidneys were 40 percent of his body weight!! He is now 7 years old, peritoneal dialysis and stuff from birth factored in. What a little miracle. I know the same may not be able to be said of Ellie in 7 years, every child is different but these people are getting me through the days until she comes and while I know she might die, medical advancements, NICU care, etc have come on amazingly since original statistics, doctors know more and our chances are as good as all these other people.

Played the piano last night...for fun! Not for long, I got tired but still, it's a start. I also did a bit of German, I'm quite behind so it's good the material I am doing is just revision really. I will catch up, especially if we end up in the hospital for a while. My life will just end up built round Newcastle. I'll even probably join a gym or group there once I am fit after my c section, so I can walk, rather than wasting time driving between blyth and Newcastle. I know when the time comes, I'll probably need the break every so often.

I ate lamb today only roast dinner, since I had the craving, even though I don't like lamb. Now, I do apparently! It was lovely, but I couldn't eat it all the time. My child is no veggie!

Feeling human

I probably need to leave the house more often. It sort of helps normality.

I was saying today, it's weird how you never think snout your kidneys. I never thought 'I hope my kidneys don't fail', I've often thoug about heart attacks and cancer, they are in your face all the time but until renal disease affects you, it isn't something you consider.

Talk about bizarre. Went to Asda with my mum and sister and we ran into Theresa, the ice cream lady. My mum asked if she still had the ice cream van and she said she'd been off for 7 months after her, wait for it, kidney transplant! We told her Ellie needed one as she had PKD and she couldn't believe it as that's what her, her brother and dad have. Right on my own doorstep! Obviously, they have the dominant kind. And yet, I'd never heard of it before Ellie. So weird! At least when I do charity stuff in the future I know somebody with a small business who may give small sponsorship so I can raise awareness and things. I'm going to donate Ellie's kidneys to the university whenever they remove them and Prof Robson who I believe is in charge of a lot of that stuff.

Now I'm off to read trashy mags and at crap while corrie is on!

One less thing to kill me

Yes, people, I am swine flu vaccinated, after travelling to Berwick to get the jab and it hurt! I don't phase at needles but it did and now my arm is sore and bruised. Was worried before I got it done but it's important.

Last night, we were both exhausted and had the first night ever where we don't wake during the night, only to have to get up early in the morning and break it! Nightmare. I tried t nap today but it didn't work so hopefully I will sleep well tonight.

Ordered my kidney necklace to help out the PKD foundation. Mothers of kids with ARPKD that I have spoke to have been really helpful afer yesterday. I just feel like my confidence is smashed into the ground and not myself but I think it is more to do with the C-section. I am so scared. I always say, what is coming after, I can manage I know. We were discussing it today. Ven in worst case scenario, we will cope because although life without Ellie is our worst nightmare, we will not be the first or the last. But, heaven forbid, should that happen, made a promise to myself that I will turn it into something positive and do a charity trek in New Zealand or Cina or somewhere and split the money between the RVI and PKD charity oand then I will raise more! Fingers crossed I never get to do those things for being trapped in hospital with my daughter though.

Got a letter through today for my first appointment with the maternity psychological services for emotional support, so that is on Monday. Hope it's ok.

Renal clinic

Not much different but I'll update you anyway.

Lee and I had kidneys scanned and ours are fine. Took quite a while to do an ultrasound of Ellie. Her kidneys are big, grown quite a lot but her lungs look appropriate size and well developed. They can never tell but on guesstimation, lungs shouldn't be a big issue. Here's hoping, praying, touching wood, etc. Her abdominal circumference I'd guess is about 90th centile, definitely close to 95th. Head is at 50th and so is weight, an estimated four pounds and two ounces. Professor Robson is totally the opposite of Dr Sturgiss, just a dynamic whirlwind but really nice. Dr Lambert, renal consultant, also explained Ellie's case is severe which we knew due to the no fluid scenario but we have read a few stories where the kids have done well despite immediate surgery and dialysis. The problems are technicalities such as catheter blockages or failure, infection, etc. Half to two thirds of babies survive dialysis and things. We will be in hospital for a long time, maybe a year so good job it's close. We will meet with the NICU team next time and see the NICU, and our next appointment is in a month.

So, all in all, no change apart from bigger kidneys which we were expecting to happen. I feel really low, not like they've knocked me to the ground but half way there at least. This isn't how I saw my life going.

Swine flu jab tomorrow which is a worry as well but as I've said, the benefits outweigh the risks and they did say there have been some very poorly pregnant women and new mums who didn't have it.

We went out for dinner after our appointment, was really nice. Just want to curl up and cry now.

Fear

It's going on for 3am and I just can't sleep so I've left Lee in bed and come downstairs for a bit. I'm exhausted, don't get me wrong, but sleep just disappeared after an hour or so.

I can feel myself just going to cry as well. I'm tired, from fatigue and from trying to be brave all the time, pretending things are normal and that I'm not terrified. I'm so nervous for tomorrow.

I feel so weak and such a failure. Lee is so strong. I know he's scared too but he is strong for all 3 of us. He never loses faith that Ellie is and will be OK. Critically ill yes, but she will be ok with us. I guess the difference is, he can take himself away when he needs to, whereas she is attached to me, growing inside me so it is never not there. That's not to say I love Ellie any more or my bond is any stronger because that is totally untrue. It's just when your hormones are already a runaway train, and then you have more to contend with, you sometimes just lose it I guess.

I never fail to admire Lee for his strength though because I just couldn't do it without him. I loved my ex until the cons of the relationship outweighed the pros then I left, and shortly took up with Lee. My ex didn't want kids which was just one problem and I couldn't accept that. I fell in love with Lee quickly but it was hard, he was used to being by himself and doing his own thing, wanted it both ways, to be in a couple but live the single lifestyle. So I crushed his soul, haha. Not really, but I fought him until he realised because he was worth it. Now, what I feel for him far surpasses love, it's love times infinity and increases every day. How could it not after this? I would rather have our poorly special baby with him than have had any baby with my ex because every day with her will mean more than the one before.

I'm scared they will take our hope tomorrow. That's my biggest fear for now. And yet, I'm full of joy because Stephen, Ellie's ARPKD amigo who is a week old later today just came through major sugary and is doing well. Words can't express my happiness for Lindsey and Billy and Stephen who is so so strong. Just praying we have their chances.

The conspiracy to kill me

Nobody offered me a swine flu jab! How bad is that. I had to ring everywhere this morning, and nowhere could I get one until I rang Scotland, haha! Ok, only 60 miles away but still. Luckily, the pharmacist goes to Berwick on a wednesday and Thursday so I can go then, only a 100 mile round trip!!! I just think there's been a few pregnancy and just after deaths and the risks of having it will be far less than having it. The midwives are telling me yes it's safe so why wasn't I offered?! Now I'll have to pay for it. Never mind, better than getting it I suppose.

Renal clinic tomorrow. I am nervous but I guess it's natural and when you have prepared for the worst, can it get any worse? Unless I got pre-eclampsia or something stupid but luckily, my bp has been good touch wood! My wishes for tomorrow are that her kidneys haven't grown too much, just to avoid nephrectomy if possible, that her lungs are still adequate size and she looks healthy in every other way. She did on New Year's eve and Dr Sturgiss is an amazing fetal med doctor so I don't suppose Professor Robson's opinions will differ too much. Meeting the renal doctor is nerve wracking too though. I know the initial problem is the lungs but in all the prenatal cases I have followed and and spoke to the mothers, the babies are still alive and Ellies lungs look fully developed. No guarantees I know. The next issues are the dialysis and renal issues so we hope that tomorrow isn't going to be another hope-killer when we've been able to hold onto some.

Watched 'The proposal' on the iPad last night, quality film! Love that Sandra Bullock. When it finished, was snuggled into Lee and kept feeling things drop, panicked it was a spider (as you do) and moved eventually. No, there was just colostrum all over my arm and a patch on the bed. Memo to self, don't lean on boobs in bed!

In some ways, we are lucky with the support we have, between all the health care professionals and our family and friends (well, mostly Lee's friends, hardly any of mine get in touch, I think they are too scared to talk to me apart from the not so close ones, and Kirsty, Gail and the 2 Gemmas). I just want to say to the friend who think she isn't doing a good job and feels bad, you really are and you will get there.

I met another ARPKD mum (or I guess they are moms haha since they are American, most of them) and her son is 2 and a half, despite being told he wouldn't live and being in hospital for 4 months from birth really ill. Also, there is another mum I read about and her little one was diagnosed at about 22 weeks or so and was still alive in 2009, following transplants and things, though she hasn't updated her blog since Sept 09. He was also in NICU at birth. It seems that, although things may still go wrong and every baby is different, these prenatal cases obviously get more intervention and have a fighting chance.

I'm doing German for my open uni course now to take my mind off tomorrow!

Getting sore

Bad back is beginning to set in as well as the stabby twinges in my bump where Ellie is growing and sitting on nerves and such, little monster!

We went out for the match yesterday, and ended up staying out all night. I only stayed because Ellie was getting her freak on to the 60's, 70's and 80's music. My ex came in with a new girlfriend or date or whatever and there's me sat with this huge beach ball attached to me, AWKWARD!

2 days until the renal appointment, to see what the crack is. Thinking I'm going to go for the elective section, much as I don't want to. I think an emergency will be much worse if I need one and it might be easier for Ell than normal vaginal birth but I'm going to ask.

It's funny, I've started to 'enjoy' being pregnant. I hated it but now time is running out and we don't know what will happen, it has given me the ability to enjoy it. I am starting to get uncomfortable but otherwise, it's nice. Hard emotionally but I'm managing.

Just wishing out luck to Lindsey, Billy and Stephen for the op tomorrow. Lee and I are thinking of you x

The most special man ever!

So, I told you all we were selling our old crap to get an IPad? Well, two people really wanted my iPod touch until last night when the light just stopped working when Lee was playing with it so, still being in warranty, we took it back to Comet, expecting an exchange or refund. No. 3 weeks to have it repaired. I was gutted especially with Ellie being due in eight weeks if I have a planned section so went to bed as I was tired and upset. I wasn't mad with Lee really, I know it wasn't his fault. Woke up and Lee wasn't in. He had gone out for milk at quarter to one and it was now 3 o clock so I text him. He was back about ten minutes later, having been to his grandparent's and asda for milk and things. I put some food in the oven and sat down, went in to check on it and there was a brand new 16GB iPad! He had snuck off while I was sleeping to get it! How many men do that for their women?! He'd also bought my favourite food from asda.

The iPad itself is phenomenal. I have downloaded 'pride and prejudice' and another book....FOR FREE! The games are brilliant, you can rent films, all my music is on here and I am even typing this on it. Definitely the toy of 2011 and will save me so much trouble in hospital as I won't need to take books, buy newspapers, laptops, etc to keep me entertained, especially if Ellie is in long term and obviously, after a section, I won't be able to drive back and forth. I really don't know what I did to deserve Lee!

Happy Birthday to Stephen Schwartz!

I am praying like there's no tomorrow. What a good day so far. And to come out crying! I know he is fighting for life but in the first instance, Lindsey and Billy were given a bleak prognosis and now here Stephen is in the world, fighting, despite small chest measurements, anhydramnios, enlarged kidneys, the whole shebang. I wish I was there to kiss them all! (I could have danced all night is stuck in my head believe it or not). Here we are, Ellie, has a normal size chest, had fluid for longer and her kidneys aren't that big yet (at nearly 31 weeks, still about 4.something mm). Between Stephen and Andrew and other stories I've heard, we have a reason to believe.

Furthermore, the midwife palpated me 3 times today and is convinced Ellie is cephalic. When she first said, we were like 'No, she can't be' but I guess she knows her job. Dr Sturgiss was convinced she wouldn't turn with no fluid! She truly is her mother's daughter, defiance until the end haha. She will maybe turn again or the mdiwife could have made a mistake but I'm not sure. She was kicking loads down low last night but like Lee says, that could have been the turning OR her fists. Even better, my fundal height was 30 and a bit, perfect....WITH NO FLUID! Ruth (MW) couldn't believe it when I said we have zero fluid, she said it didn't feel like anhydramnios. I told her, definately, and we saw with our own eyes on New Year's eve, nada in the way of fluid. Might be because my placenta is on the front.

You learn to take happiness where you can get it with prenatal ARPKD, I have found in the past 3 weeks (and 11 weeks of strain and worry) but today it was handed to me on a plate.

The night before our last Dr McKenzie appointment (before ARPKD), I had nightmares all night about things being bad and her saying the baby was going to die and things were terrible. Last week, before our appt. with Dr Sturgiss, I had dreams where he said we had to terminate, etc, and he did offer us termination for the second time (won't be offered again unless we wanted it. As if with upto 80% chance but the man was only doing his job and is an outstanding consultant) and last night I had dreams all through the night about Ellie being in NICU, she struggled at first but she got there. I had two other dreams in January 2010 that turned into prophecy dreams too so I am hoping, if psychic abilities exist, that last night's dream comes true. It sounds terrible to most people: 'I hope my child goes to NICU then we become RVI parents'. That is what we are striving for! If we never go on holiday, get married, have decent careers, who cares as long as we have each other.

Productivity-updated

This blog is about the most productive thing I've done recently. I got in the bath today, fully intending to play some piano, do some open uni work and tidy the computer room then dried my hair and fell asleep! Well done Naomi. It's not too late I suppose at 5pm.

I discovered something really weird (and funny) in the bath. If you half recline as if you were doing a sit-up, you can totally see where the baby is. I think she was getting annoyed at me waking her up for my own entertainment haha. No wonder she was beating me up this morning.

The awful conversation of funerals (just in case) half happened today. Not planning it, but just costs and things. It's awful, I feel like I'm passing her off already but I'm not, just trying to cover all our bases. Hopefully, we won't need to talk about it again. It came up mainly because we don't know what to do with our health in pregnancy grant so I'm just going to put it away as we don't want to buy baby stuff right now and it is for the baby after all.

Just a quick request-if anyone is reading this, we'd love it if you could just leave a quick comment. We aren't asking you to be followers or anything, it's just so we know who is visiting and keeping up with our bambi.

Adios for now

Update:

My friend, Lindsey, (Stephen's journey in links) is in labour so please everybody pray for her and her family. She is updating so I will be following her and hoping for good news.

Also, another ARPKD mum got in touch via babyandbump. Very weird, I had been giving advice on an 'enlarged kidney' post and she had seen my post mentioning ARPKD, remembered our low fluid scenario and got in touch. Apparently it is a big thing in her family.

Oh and I even played some piano (and sold my DS. £60 in the Ipad fund, oh yeah!). I am learning 'Lizzie on top of the world' by Dario Marianelli from Pride and Prejudice (Ke-Kni version, not Colin Firth one). It will take me forever as Lee is also making me help him learn the guitar!

Looking for the good in the bad

One thing most mothers can't do when carrying their child: feel their child (and I don't mean kicking or pushing out). Because my bump is fluid-less and compact, I can actually feel Ellie on my left hand side a lot (she virtually never goes to the right to sleep), including her back, so I can rub her back with only a small amount of fat and muscle in between, more than normal pregnant women. Not great I guess but it's cool to me, because she really seems to like it. She had a really quiet day yesterday, as she was so active during all the partying with the noise so she must have been exhausted. She forced me to have a chicken burger at weatherspoons today though haha!.

We've been out looking at Ipads today and are going to get one, for all our time (super fingers crossed!) in hospital. Saves taking books, laptops, DSs, music, as it's all self-contained. The Apple store has them so you can try and they were AWESOME.

I was really low yesterday but for all I've been uptight today, I have felt a bit better. This morning I said 'Why do we have a poorly baby?'and Lee replied 'No, she's our special baby' which was lovely. We talk to her a lot and I'm going to get her clued up on Kylie Minogue this week. You are never too young to have a girl crush, haha, Kylie and I took up together when I was 3!

My new ARPKD mum friend, Lindsey, is due soon. When you read this, Lindsey, you're latest post was moving and my sentiments exactly. I'm both excited and nervous for you, your husband and Stephen. I pray everynight, not that we have perfect, healthy babies. Our children are perfect. I pray that our babies have a chance. I know it will be hard, days weeks and months in the NICU-I'm planning my life round hospital. I also pray that if it comes to it, take my chance at a career, travel, expensive nice things, being able to do things I love like music, etc. It's not important, as long as I can help Ellie and she can do those things. Sometimes I wonder how I haven't lost faith but then I remember, the universe (or God, both the same to me but not wishing to offend) has taken her twice, and given her back twice. They don't want me to be complacent. I have re-evaluated my life. Twice we have had no hope then been granted a lot of hope. 70% for ARPKD survival at birth is a lot. Dr Sturgiss has guesstimated 75-80 for us. More than usual. We 'conveniently' live next to one of the best ever hospitals in the country. Her lungs 'conveniently' formed before we lost the fluid. I 'conveniently' studied a year and a half of children's nursing including meeting the community team, learning aseptic techniques, dealing with traumatic things, operations, invasive procedures, infection control etc. How can I lose faith in that?

Hello 2011

Another year is here. Time flies!

We went to a couple of house parties, New Year's Eve and yesterday, both days I have felt hungover and can't even drink. Don't know how that works! They were pretty good, loads of food (woohoo) and just feeling normal. Now all the snow is gone and the Xmas is over, it's all just sucky again! I love Xmas.

People are just getting on my nerves right now. Not Lee but I think I'm just jealous of the triviality of their lives. I wish the most important thing in my life was should I go out or not or, in terms of pregnancy, is my back bad or do I feel sick. My life will never be the same and not in the normal 'I'm having a baby' kind of way. I will either spend my life looking after a critically ill child or be mother to a child who isn't here, always missing her and knowing my life isn't complete. I would rather spend all my time in hospital to be fair, I can cope with that. Not long until our joint consultation on the 11th with Professor Robson (fetal med) and Dr  Heather Lambert (Renal consultant).

I may play the piano today, first time I've even considered it since about 10 weeks ago. Playing the Sims is not helping my intelligence!