Tag: TFMR

Holidays and Hospital Stays

Holidays and Hospital Stays

Last week we got back from 10 days in Northern Cyprus. We had a lovely time, Little T, particularly so!

The flights over were fine, but the layover in Istanbul was beyond stressful. Mum and my Bro went missing as we were separated getting off the plane, i had their passports and boarding cards, so they were stranded, and it took well over an hour for someone to take me seriously. This all because my Mum uses a wheelchair when travelling.

Anyway, we got to the hotel in 1 piece. Mums wheelchair spent the night at a different hotel mind you as it was unloaded incorrectly from the transfer!

My Grandad then passed away whilst we were there, but we tried to make the most of it. I think that’s what he would have wanted.

Little T was known throughout the hotel and down in the harbour. He managed with the heat incredibly well but isn’t a fan of a shower. He discovered chips and ate them everyday, along with Cyprus sausage, he learnt lots of new words and took lots of walks (not independently yet).

Since being back, I’ve booked Christmas dinner in Leeds, only to be told 20 minutes later, I’m having my MS treatment the week before Christmas and that kinda is the worst timing ever.

Ill be in hospital for 5 days from 17th Dec. Ill be given Lemtrada via infusion over those 5 days. The medication will bind to and destroy my white blood cells so ill be immunocompromised following the treatment. So being in a pub full of people 4 days later isn’t ideal!!!

Mind you, nor is handling strawberries due to the Listeria risk, but you gotta live, so ill be sat in the corner come Christmas day, keeping away from people!!!

I honestly thought after losing 2 babies and doing 9 rounds of IVF, I’d paid my dues, seems that’s not the case!

No rest for the wicked

Love, Little Miss PMA xxx

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This is why not

This is why not

So…

A lady on a facebook group im on, lost her baby girl at 41&2

She did a facebook live describing how it all happened. She was still in shock and she was/is trying to cope so i dont begrudge her for talking about it. I applaud her.

What shes going through is 100 times worse than anything i had to endure, she has to look at the moses basket and pram, knowing her angel wont ever use them.

Awful.

Anyway, im trying to watch her live, i get to the bit just before she gives birth…and i crumble. We already know shes gonna be stillborn so i should be ok. I wanna be strong for this lady.

But i break…

Im back in the room where Milo was diagnosed with HLHS, im giving birth, im losing Millie, im contracting…

I’m full of anxiety, I’m tense, i wanna be strong but I’m not. I’m a mess.

And that’s why i can’t have another. I can’t go through it again.

Love, Little Miss PMA xxx

28+4 Growth Scan

28+4 Growth Scan

Today we saw the little dude today for the 1st time in forever, well, 5 weeks!! 

I had my pre term clinic cervical scan 1st, its 3cm and closed so ive been signed off from that clinic now!! Woohoo. No more dates with the dildocam!! 

Then we moved onto the growth scan. He has a huge head (to me, for pushing out. HC is 285mm!!), big tummy and average thigh bone length. 

His estimated weight as of today is 3lbs 1oz. He’s huge!!! 

This is him with his face turned to the camera and arms up by his chin

My amniotic fluid levels are normal, my placenta still posterior and high with normal structure and blood flow to baby and placenta are excellent.

Essentially im text book. WOW!!! 

He has gone from the 46th centile to the 67th centile but all tracking well so no concerns! 

I had routine bloods done, my blood pressure and urine are fine. All in all im physically fine. Next scan is in 3 weeks.

After the exams i had a chat with V. I had 2 worries today.

1 – not being on a ward after the birth. I really think my anxiety will spike if im surrounded by other Mums and Babies. I dont sleep well at the best of times and being on a ward means i wouldnt sleep at all. I really want to establish breastfeeding if i can before leaving and i think id be too flustered in a ward. I feel overwhelmed just thinking about it.

V said that when we do my birth plan she will pop all the above down and recommend a private room if there is one available. I totally understand that other Mummies may need it more than me though so its not a gurantee, but she said the ward will try really hard. So thats 1 anxiety down

2 – i dont want to go over 40 weeks. We know exactly when i concieved and placentas arent made to last forever and i worry about it failing after 40 weeks.

V said that ill most likely be induced at 38 weeks as that really is term and research shows its a good time for baby to be born. This will be brought forward if there are concerns, but it was music to my ears. We will firm up at date nearer the time but looks like the little dude will be here within the next 10 weeks. Eeeeep. Its actually more like 9 weeks on saturday….

SINGLE FIGURES!!!! 

So that was my morning! Exciting, nerve wracking, scary but good scary,  stuff.

Mr Me has now emailed our solicitor to see if we can speed up the house move too as we are currently set to move late April with baby now due mid May.

Its all go go go

Love, Little Miss PMA xxx

I nearly gave up…

I nearly gave up…

When we started this journey nearly 8 years ago, we never imagined it would be so long, so hard or so heartbreaking. 

I remember for the 1st 6 months or so it was fun and just meant having more sex. Then it became all about timing and not so fun anymore. Even through the investigations i never really thought there would be an issue with either of us.

Clomid would be the answer. Its a horrid medication that made me feel so hormonal and under the weather but it would work. After 6 months, with no monitoring, it was IVF time. I now know it was prescribed just to allow us to jump a hurdle and get on the IVF pathway.

IVF is a game changer. It affecrs every part of your life. It takes over. You dont stop trying naturally despite knowing there is a 0.01% chance itll happen for you. So the mechanical sex on top of the stress of waiting for the ivf appointments, whilst also trying every fad diet and old wives tale is really fun. Not. Then you deal with the people who say ‘relax, itll happen’ or ‘its just not your time yet’ and have to be polite and smile rather than bitch slapping them, because we do live in a civilised society after all and it wouldnt be proper.

When you finally get going, 6 months after the original appointment where you found out you both have fertility issues, despite being told everything was ok during the investigations, you, as the woman, are pumped full of hormones, whilst your partner can only watch on in disbelief as you get angry in a second or complain how swollen you are inside.

After egg collection youre told your number, the number of eggs they artificially pulled out of you and you live or die by this number. Only then to realise you are fairly unwell, cant stand or walk and throwing up everywhere. Youve developed OHSS, a life threatening illness only IVF ladies can get. What a club to be in. But you battle through it, not wanting to admit to how poorly you are lest it delay the cycle because in just over 2 weeks you will be pregnant.

The daily updates see those precious numbers dwindle, 23 collected, 13 fertilised, what happened to the other 10 bastard eggs i pumped myself full of drugs for? Eh?? But youre assured its ok and normal. By day 5 after collection there are 3 left in the running. 3. 20 have failed. Meaning we have failed. 1 is put back despute the environment (my uterus) not being ideal and you are sent away to manage for 17 days with no contact.

You analyse everything, every sneeze, every hiccup, noticing you tan faster than normal. This has to be it. I will be pregnant. Until you bleed bang on the day you were due on. 5 pissing days before test day. It failed. I failed. My body failed.

Luckily the other 2 embryos were frozen so you have 2 more chances. But the wait for treatment is horrendous. Youre told 3 months but its actually 6 before they can fit you in. This time you have to down regulate your body, put it through the menopause. 5 long weeks of injections, tablets, headaches, mood swings, and hot sweats. Only to be told your uterine lining is too thin and they are cancelling the cycle. I failed. Again. I cried for 8 hours that day.

6 months later and you do it all again. Same result. But no tears this time. Failure is becoming the norm now. Instead you are just angry at the whole proccess, at yourself. At the world.

You watch your friends have their babies, it breaks your heart everytime but you are over joyed for them and devestated its not you. You still hope at this point though.

The powers that be discuss your case, amongst themselves, not with you. They decide to try a non medicated cycle. You agree to anything. 17 days of early morning blood tests and finally ovulation is detected. But your lining is only 5mm. They want to cancel. You beg your nurse to put your case forward to the powers that be in the afternoon briefing, explaining youd rather have a chance than nothing at all. That your mental health is suffering and its either transfer MY embryo or a stint in the Priory.

They agree but warn you repeatdly you are wasting a chance. But it works. Then there is The Story of Milo (see 3rd ever blog) 

After a loss like that, all you want is to be pregnant again. Your body aches for what has been snatched from it. We tried naturally again whilst we waited for our turn to try with our last frozen embryo. Youre meant to be your most fertile after a loss. But youre not that lucky. Of course youre not.

6 months and we try again. Same as before. It worked before it can work again. But it doesnt. And you are left with nothing but a wait to confirm when you can start the whole damn proccess again.

But i cant wait. I need to be pregnant now. You investigate clinics abroad. Something you never dreamt of doing or needing to do. And you find that one clinic that feels right. You just know its the clinic for you. Personal loans, flights, accomodation, drugs all sorted in 6 weeks or less. Its so different and daunting but this is your chance. You get there and within minutes know you made the right decision. It doesnt matter that you cant eat or drink as your body is having some sort of weird reaction to something (turns out boling the water doesnt kill the bugs but you wont figure that out for a long time yet) you know this is the clinic that will get you pregnant.

They do too. And its wonderful. And despite many hiccups, the baby is healthy and for 9 days you feel nothing but bliss. This is our time. This is our baby. But out of nowhere, the baby is gone. Eerily timed so that you lose that baby 54 weeks after losing the 1st baby, at the same number of weeks gestation. 

And it breaks you. Mentally its too much. You try to get on, try to be normal, try to be ok. But youre not. Not at all. You know you cant face trying again anytime soon and you think by having that year out, by going to creamfields, to disneyland paris and to Australia, you are healing, body and mind. Until your mind craps out on you the week before Australia and you have another breakdown. Except you dont know you are having it until its pointed out by a colleague. How embarrassing.

Being on the other side of the world with your bestie and hubby does the trick. You reconnect with your hubby and realise you are not alone. That anxiety monster just told you you were. You drink everyday with your bestie who oozes positivity, and it rubs off. You can do this. You are ready to try again. 

So you fly out to that fab clinic that gave you that healthy baby knowing this is it. Until your hormones dont play ball and you cant transfer. You mope for 2 days. Not anticipating a freeze all cycle but you bounce back, have a holiday and feel pretty smug you have 7 to feeeze. But you need to keep going. You are back in the ivf mindset after 14 months off and you struggled through stimulation this time. So much so you dont ever want to stim again. 

So you fly out again the folliwing month, leaving hubby at home and taking Mum instead. Another villa, another hire car, another week out of work. The meds make you poorly but you carry on. You keep up the PMA. They transfer 4 of the 7 and you fly home the next day. Already pretty sure it hasnt worked. You just dont have ‘the feeling’ but you try to get through the 2 week wait with positivity until you test the day before bloods and see the whitest of white test staring back at you.

And you give up. Its all over. You had your 2 chances and it didnt work out. Youve used up all your luck. You wont be a mummy to your biological children. The hope after 8 cycles over 4 years has run out. If the amazing clinic you put all your faith in cant do it, no one can.

But they, the clinic, offer you a life line and youd be stupid not take it. It means stimming again which you REALLY dont want to do. So you decide if youre going to do it, youre throwing everything at it. You borrow money from parents to pay for this last shot, to ‘kitchen sink’ it. You dont believe itll work. Youre doing it to say you tried everything, so you walk away knowing you gave it your best shot. Time has taught you that life isnt fair and now you are ready to accept that. You do it for hubby, you do it for the potential grandparents but deep down you know its game over.

So you fly out for the 3rd time in 4 months. You know this town you stay in like the back of your hand now, sat nav no longer required. And you go to the appointments and be your cheery self and you meet the other patients and tell them it will work and that they have chosen the best clinic ever. Because they have, they dont need to know that i have used up all my luck, that my body has failed me, that ill never be a Mummy.

And you go through the motions and you have the transfer, even realising its been your best cycle yet and the numbers didnt dwindle too much and that you made 6 healthy embryos, 4 of which are inside you making you a bit crampy. But you dare not dream.

And you come home and you have ‘the feeling’ but the doubts creep in and you are so so scared to get your hopes up. But eventually you crack. You test earlier than ever before, and there they are, 2 pink lines. It actually bloody worked. It was worth the £20k you spent over those 4 months just to see those 2 pink lines.

Then you realise you have to actually get past 21 weeks gestation this time and that doesnt seem possible. You spend the 1st 12 weeks numb, especially when you start bleeding in week 10, but at your 12 week scan you fall in love with that baby on the screen. You continue to bleed and be in and out of EPU almost weekly so you spend the next couple of weeks petrified youll lose that baby you now love.

And then the bleeding stops suddenly, but you cant relax as youre now counting down to that fateful 21st week. You increase your counselling sessions to deal with the anxiety but you dare not hope for the best. And you have your anomaly scan and baby is perfect, like the last one. So you still dont hope. And then its week 21 and you are strangely calm. Something feels different this time. You cant explain it but you make it to week 22. And then week 24, youve a viable baby on board for the 1st time ever. And you are elated but cautious. Then you hit 26 weeks, 27, its a miracle.

Today im 28 weeks. Thats the 3rd trimester. 12 weeks until term. Hes a real chance of surving now. And im over the moon and cant quite believe we made it.

And i nearly gave up, i nearly didnt have the cycle that created this precious life inside of me. I was so hurt, so broken, i didnt think it’d happen for me.

Love, Little Miss PMA xxx

Wave of Light Reminder

Wave of Light Reminder

Wave of Light Event

Today is International Baby Loss Awareness Day. Tonight at 7pm, all over the world people will light candles for the babies they lost, carried but never held, that were born too soon or left too early.

This is such an important day for bereaved parents like me. For those of us that havent lost a baby, this goes fairly unnoticed. We see it but dont understand it. And i hope that you never have to.

The grief continues forever. The hurt never leaves, we just learn to live with it, make space for it in our lives. But Today we can remember, openly. Today we can say, i lost a baby and it still hurts.

Today we can be sad once more without hiding it from the world. Today we can say, it happened to me. Today we can whisper our angel’s names and think, what if.

Today we dont have to hide.

I choose to speak out about this issue as i feel im strong enough to do it. Sometimes its like im meant to forget and just get on with life. How can i forget my babies? Yes its been traumatic but they are part of me, literally, their DNA is still floating around inside me and will be, forever more.

Having a Rainbow Baby doesnt make things better, that baby cannot replace what we have lost, but i hope, if Storm Trooper makes it into this world, i will have a new focus. But ill always light a candle today at 7pm. To remember what we lost.

I hope youll join me tonight and post pictures of your candles.

Love, Little Miss PMA xxx

My Wave of Light

My Wave of Light

Hello all

As you know, Saturday is the Wave of Light at 7pm. I thought it would be nice if we collated the photos and have a mini wave of light of our own.

Ive created an event via my facebook page and the link is below if you would like to join.

Wave of Light 2016

Simply take your picture of your candle and post it to the event and we can remember together. 

Love, Little Miss PMA xxx

My Baby Loss Stories

My Baby Loss Stories

Yesterday i asked you to share your story, here are both of mine…

Milo’s story – after 3.5yrs ttc and 4 rounds of IVF we got our 1st BFP. Ecstatic wasnt the word. We, like everyone, immediately started planning for our future. I bought what i wanted when i wanted. The 12 week scan was textbook although he was naughty and showed his bottom a lot,  there was nothing to worry about. We had cracked it, infertility hadnt beaten us we had beaten it. The pregnancy flew by, i had the occasional worry it was ‘too easy’ but i pushed them to the back of mind. The 20 week scan came around, we didnt want to know the gender. I commented on how clear the scan was, i could see the heart. The sonographer was quiet. Too quiet. Then she said ‘im sorry i think there is something very wrong with babys heart’. Ushered into a small room and then fast tracked to a same day appointment. Baby had a heart condition incompatible with life (HLHS). 4 days later i signed consent to end the pregnancy. On 13th March 2014, Milo was born sleeping, 36 hours after my 1st medication to induce labour. He fought until 2 hours before he was born.
Millie’s story – A year after the BFP that gave us Milo, our 6th IVF cycle brought us a new pregnancy. This time we were more cautious, a BFP didnt mean a baby and nor did a heartbeat. At 12 weeks her nuchal measurement was too high. 4 weeks of tests and scans later showed she was ok. We started to relax. We went to the baby show and i went a bit mad buying things. Clear fetal heart scan at 16 weeks and perfect anomaly and heart scans at 20 weeks. We were home free. On 26th March 2015 i had backache, at 4pm i started contracting and at 7.48pm our perfect girl was born sleeping. We lost her to unknown infection

These are very ‘slimmed down’. For more detailed information, please read ‘the story of Milo’ and from ‘I dont know how or when’ onwards for Millie.

Love, Little Miss PMA xxx

I had THE dream

I had THE dream

6 weeks 1 day

My symptoms are still only minimal, eating, weight gain (6.25lbs since Cyprus) and vivid dreams.

Last night i had the dream i was hoping i wouldnt have. The one where it all went wrong.

I had gone in for my 12 week scan. It was performed by my bereavement midwife, in a corridor on the feotal medicine unit. She asked how many scans i had had so far. For some reason i answered 5, but then corrected myself and said 1 (the 6+4 scan that im due on Thursday). I was stood up for the scan weirdley. Very quickly she told me baby was poorly and that we needed to terminate. Then i was sent home for 5 days.

During those 5 days i rang up to ask what was wrong with her (baby was a girl) to be told a very complicated name which i couldnt spell so couldnt google. We went back to hospital still none the wiser, and my bereavement nurse said, all cheery like “shall we get started then?”. At this point i broke down as i had no clue what was happening. I was told baby had too much fluid on her brain and that we had to end the pregnancy.

I begged and pleaded for another scan, a second opinion. As i was distraught, they put me in a broom cupboard?! Mr Me went to work. I ranted and raved in my cupboard. Heartbroken and devestated. 

Then the broom cupboard was an office and i was at work. A family member of someone we support was there and also had to TFMR (Terminate for Medical Reasons). Shes in her 60’s but i helped deliver her baby, from her leg. The baby lived for some time and for some reason i had to keep hold of her until she passed.

Then i was back in the broom cupboard. I couldnt do it again, i kept telling everyone i couldnt but they didnt care. Mr Me didnt care. I was begging them to let me carry on with the pregnancy, to try and understand what it must be like for me, why i couldnt face it again. They eventually agreed to let a consultant scan me….and thats when i woke up.

I knew it was a dream as i was having it, Mr Me and the bereavement midwife wouldnt have behaved the way they did for a start. Even whilst i was dreaming it i was thinking “oh you are having THE dream” 

Despite knowing it was a dream; its still my worst nightmare and i had to go through it. Clearly im more anxious about this pregnancy than my consciencious self is acknowledging. Im glad of the protection my brain is giving me as trying to get through each day feeling like i did in the dream would be hell.

I think thats probably why i had the dream actually, ive not been enjoying the numb state the last couple of days, this dream serves as a reminder as to why i need to be numb right now.

Im glad i dont put too much stock in dreams as this could scare the s**t out of me if i did.

Love, Little Miss PMA xxx

An Open Letter….

An Open Letter….

Dear Take Home Baby Gods,

7 years ago, we decided to try for a baby.

6 years ago we were referred for fertility testing

5 years ago we found out we needed IVF

4.5 years ago i invented you.

i know you are not real, you are a figment of my imagination, but when im desperate, when i need someone to talk to/vent at/be cross with, there is no one in real life i can blame, so you came into existence.

I used to ask you to let the IVF work, all i wanted was a BFP. how naive i was eh? i thought a BFP meant a baby, but you proved me wrong.

My 4th IVF cycle saw me get pregnant for the first time, i was overjoyed, we had cracked it. Or so i thought. in a cruel twist of fate, at 20 weeks Milo was diagnosed with HLHS and we opted to end that pregnancy. it was the right thing to do.

My 6th IVF cycle saw my second BFP and despite a few hiccups, Millie was healthy. but 9 days after finding that out, you took her away. Why? was it punishment for Milo? is is punishment for a past life? is it a test? are you trying to tell me something?

If so, could you be a bit more clear about it please?

we had a year off, my head was battered, my heart broken, i was a shell of the woman i remember myself to be. it did me good, i got my strength back and i didnt think about you at all.

In May we got back on the train, yet again you are not happy with me, first throwing a freeze all in my way and then a BFN on the resulting FET. Now im planning cycle 9.

What do i need to do to please you? What do i need to do for a take home baby – ill do anything, i just need to know what.

Im so sick of being the strong one, the positive one, the patient one. its got to be my turn now? i try to get on with life, in between cycles, you know? but i know you are always watching me, deciding if ill ever get my take home baby. I can feel you there as all i think about is the upcoming cycle, and what to try this time.

if you let me get pregnant, i promise not to buy a thing until im near term – will that please you?

ill give more to charity, ill help more in the community, i WILL adopt as a thank you for letting me have my own biological child. i just wish you were real and i could offer you something so you look favourably on me. but of course, you are in my imagination. there isn’t anything or anyone that can assure me a healthy baby, or even a pregnancy at this stage. but wouldn’t it be wonderful if you were real, and i and all the other infertile/bereaved parents, could know what you wanted to ensure the next pregnancy is a safe one.

So basically, Take Home Baby Gods, this is my prayer to you. im out of money, im out of holiday and im out of steam. ive got enough left for one more shot at this. no one will love a baby more than we will, no one will ever be as grateful as we are, no one baby will have as many aunties and uncles from around the world. Please, please please, just let it be us. please?

thinking of you

Little Miss PMA xxx

Confession time

Confession time

I lied. Im not OK about yesterdays news. Its not because im worried about success rates though.

Im worried i might not have the courage to come back. This is going to be a waffaly post as i try sort my head out.

I absolutely understand that there is no way transfer can happen this cycle. Even if it did it’d most likely result in a negative just like my 1st fresh where they did a transfer despite me having OHSS.

Its a head heart thing and yesterday i was all head but the more i thought about the more i realised how much I’ve been struggling.

I’ve pretty much ignored the cycle as much as possible because i am scared. I am scared that history will repeat its self.
I built myself up to come home pregnant and start that long journey over again for the third time.

But now? Now i have time to think. I actually wondered to myself yesterday if i actually wanted to be pregnant ever again. Too much thinking time is a dangerous thing.

I’ve also really struggled mentally with what I’ve had to give up and now im allowed it all again (as of tomorrow anyway) so what if i cant give it all up again.
I know that once those embies are back where they belong, ill find the ‘giving up’ element easier as i wont be doing it for me or for treatment but for my babies and if i cant do it for them I’d be no sort of mother.

So how do i keep up the IVF mindset when not IVFing? How do i stop these fears taking over my mind?

If im totally honest I’ve not really put my all into this cycle…there’s usually a number of things I’d do that i just haven’t (things to stimulate follicle growth which it turns out i didn’t need!) and altho its not hindered my follicle growth, it shows my heart wasn’t in it really.
Is that wrong, or bad? I don’t know. Or is it self preservation.

Its certainly highlighted to me that im more fearful of a pregnancy than i realised which is something ill work on in counselling, and would/will be doing throughout the pregnancy.

Im also a bit sulky. Why is it always me/us this shit happens to. Im the one to loose the baby, im now the one who has to delay treatment whilst everyone else carries on with their dream

The ladies i met yesterday are awesome but again we are the only childless couple out of the 4 of us. And I’ve probably been at this the longest. Oh woe is me. I hate myself for being like this really. Hate feeling sorry for myself and get annoyed that people don’t get it when all they are trying to do is reassure me that it will work, eventually.

At this point I’ve no idea how long a break i need to have before i can come back but i do know it needs to be quick. I thought about leaving it till September so its cooler but the more i think about it the more i know it’ll be delayed due to birthdays, anniversary’s and christmas.

Another problem thats occurred to me is, if i get pregnant (pg) any later than June, im gunna still be pg in March. The month i was so desperate to avoid. I know March isn’t cursed or anything but i really wanted to avoid it given my last 2 births were in March and obviously didn’t end well.

There are heaps (haha thats your fault L) of thoughts and feelings battering me from all sides at the moment and its a bit rough if im honest.

I want to be stronger and more positive for myself like i am for other people but its rapidly draining. The prospect of adoption actually looks quite appealing at the moment as opposed to the fear it used to instill in me.

I feel like a coward, like i could just run away and never come back (except for holidays) but what a waste of time, energy and money that would be. I’ve got THE best team behind me who i have no doubt will get me a take home baby, and i don’t want to let them down either. They work so hard to make miracles. Who am i to bottle it?! After all the effort they put in?

Counselling will help me sort through this and having a time line will help immensely as i can plan and we all know i like to plan.

I need to try put this out of mind for a bit so i can enjoy my time with hubby on holiday but its thrown up so much hidden stuff i had no idea i was even hiding from myself.

And i will bounce back, i always do but sometimes it’d be nice if i didn’t have to.

Love, Little Miss PMA xxx