The Rollercoaster

6 days after the first anniversary of our eldest... I got a positive pregnancy test. I actually got 4.

After we lost our littlest one, we debated long and hard on whether or not to try again. In March, we had genetic counselling and they couldn't find a genetic link. She was a very honest woman, she said that there were millions of genes/DNA and they just don't know what they are looking for. It's like you are putting a puzzle together and you know there is a piece missing but you build it anyway and hope that it becomes clear what you are looking for. That is what the scientists are looking for. If that makes sense.

She said she knew we would have a healthy child one day. She was sure of it. We may have to do IVF for it but she was sure.

She started by putting me on a very high dose of folic acid as it had helped women in cases of neural tube defects and, well, "you just never know".

When we saw the consultant in the April, he said he couldn't tell us not to try because it was our decision but he felt that my body needed to recuperate after 2 pregnancies in 9 months.

I felt otherwise.

My husband would say he was unsure of trying again, he didn't want to go through the pain of trying and possibly losing another child. There was something innate inside of me that urged me to try again. No one, medically, would confirm but I just felt that I couldn't carry healthy boys and if I had a girl she would be healthy. I think this spurred me on.

So here we were 6 days post the first anniversary of our eldest, clutching 4 positive pregnancy tests. Happy, elated, petrified, scared beyond belief. But what was that? A tiny glimmer of hope???????

Somehow I felt protected in this pregnancy. I felt from the start that it was a girl, everything just felt different. I was poorly with it, more so than with the boys. I got anxious and upset just before every appointment with the midwife and the consultant. I would tell myself after each one that all was okay and then at the midway point I would begin to waver and right before it, I was a nervous, trembling wreck.

I had been pregnant for the last 3 years.

I had the same midwife for the last 3 years too.

With the littlest, we knew we had to get to the 20 week mark to know if we are 'safe'. But now with this pregnancy, and sadly, from our littlest, we had to get to 16 week mark.

16 weeks = New Years Eve

I don't think I had ever felt so petrified in all my life. I was shaking so much. 

With the scans with the boys you could see that there wasn't something right about their hearts. Straight away, you could see that the baby's was equal. I was not a professional, just a professional in heart ache.

The consultant did his bits and bobs and it took an age but then he said the words I had been waiting for.

All looks good

He was a matter of fact kind of guy, straight down the line, no bullshit, and he wouldn't say it if he didn't mean it.

O how the tears flowed! Happy tears for a change. 

And a girl too!

The first people we told of course were our boys. Our precious baby boys! Thank you so much!

Obviously we still had the 20 week one to go through but this was a milestone in itself. 

It was time to shout it from the rooftops.

The Last of The Firsts

I always say the build up is the worse as I could and can recount what I was doing at each precise day and the hours up to and on the day of our eldest's anniversary.

I was warned that I probably would clock watch the whole morning until that time came again. And I did. All in third person, all hoping, waiting for a sign of what was to come, to try and change it.

But it never came.

We had chosen to be on our own on the day itself, lost in our own thoughts.

The day itself wasn't as bad as thought it would be. The tears flowed easily but it was to be expected. It was emotionally charged to think how our lives had changed in a year.

How much we had changed in a year.

We clung to each other, both too scared to admit how much it still hurts. I don't think we said much to each other all day. Lots of hugs and wiping away tears.

Just like the 364 days before it, we got through the day.

Bottom of a Barrell

That is where I was.

I was told it was probably normal but no one knew what to do or say. Even I don't know what to do or say.

I had no idea on how I was going to pull through on this one. Again, my husband, family and friends helped me stand. I was also very lucky to have a thoroughly supportive GP.

I was diagnosed with severe depression onset from bereavement, high anxiety levels and OCD. Those are my medical labels and you know what I wear them on my sleeve along with the fact that I am a very proud ANGEL mummy to TWO beautiful boys.

A friend told me a very beautiful saying and it will forever more stay with me as I miss my boys terribly but she told me that "they are just playing out of sight."

We returned the the hospital at the beginning of April 2010 to get his post mortem results. My consultant ran through everything. My baby had a variant of HLHS. He had various other heart abnormalities as well as bi-lateral lobes on his lungs. He had a partial malformation of the gut too.

Poor baby boy but at least he was at peace with his brother. I just wish he was with us.

The consultant said our chances were at 10% of having another HLHS child. He ran through that if or when I got pregnant again that he would gladly see me again but understood if I wanted someone else. I said I would prefer to see him but was touched that he could feel my pain.

If I am totally honest, I never thought I would feel human again, I just felt like this emotionally numb person. I was watching myself via the third person; doing the right things, saying the right things but it wasn't me. It sounds utterly crazy but its how I existed.

My GP, once again, very supportive referred me for some counselling. The first lot, she was rubbish, I would spend each session crying at this stranger for no reason that the fact that she was there and she just wanted me to talk. She didn't ask any questions or anything. I would come out of there so emotionally drained.

It was around this time that we heeded everyone's advice and booked a week's holiday to Egypt. It felt so wrong but maybe everyone was right? Who knows. I asked friends to check in on the boys every day for me, just so I knew that they were okay. As we were waiting to board the plane, I felt like my feet had been super glued to the tarmac; every inch of me, did not want to get on that plane but my husband was behind me and I knew I had to try for him and everyone else. I somehow managed to get on the plane. The holiday was okay, in hindsight, it was the wrong timing. We never relaxed enough to enjoy it fully. My husband said on return that he also didn't want to get on the plane but knew if he told me we wouldn't have gone and he thought I needed the break too.

Since the day our first died, another ritual we had was we always looked out to the night sky and looked for the biggest brightest star and whispered secrets and thoughts to him and said good night. A ritual that carried on when our youngest died and wherever we went we did it too. My gosh, the only good thing from that holiday was the night's sky... it was beautiful and breathtaking!

When we got home, I went back to the GP and said that the counselling wasn't working and she agreed it didn't sound like it was helping. Coincidentally, she had been posted an info pack about a counselling centre for pregnancy and baby loss which was in our local town. She gave me the number and urged me to call them as she truly felt they would help. She said we needed to learn to love again. I had always pestered my husband for a pet and he finally agreed I could get a kitten. A wonderful friend's cat was pregnant and she told me I could have the first look in and we chose a beautiful girl cat. I fell in love with her straight away and she still is a mummy's girl to this day.

It took me a long time to pluck up the courage to phone the counselling place and they quickly put me at ease. The first appointment she ran through what they offer, a 10 step programme, some steps took longer than others but we worked through every single emotion felt about that step and the result should be some sort of resolution to the emotions. I truly believe that that counselling centre helped me understand everything and question why I felt that way.

So there we were approaching the Autumn and the first anniversary of our eldest. It was getting hard emotionally to deal with things but the counselling was helping me work through it. We went for an overnight stay in Cornwall to use up a holiday voucher we had been given and I felt so much more different to the 3 months prior. Okay so I saw the boys before and after but that knot in my stomach had worked its way loose. It was the last of the firsts that we were going to have to live through.

The Cat

After we lost our youngest, I was told that I needed to learn to love again and have that love reciprocated. I should get a pet.

I had been nagging my husband for years about a pet. We both would have loved a dog but we were in a flat so it wasn't ideal so I persuaded him to let us get a cat. I asked my friends on Facebook if anyone knew of any female ones for sale and one of my friend's cat was actually pregnant. She said I could have first pick when the time came.

30th March 2010 - my princess was born. I immediately fell in love with her and remember where I was when my friend text me a picture of her - Sainsbury's!

I was so excited to meet her and have her home.

She still is my number 1 princess and very much a mummy's girl. We go everywhere together and I spoil her rotten. My husband spoils her too but not like me!

She helped me learn to love again and get love back!

Life as an angel mummy... Twice Over

3-4% was our original chance... I may be unlucky to have 2 boys with HLHS but I was lucky to have 2 beautiful boys.

I remember the day he was born very clearly, why wouldn't I? As I was only 17 weeks and 5 days, we didn't go to labour ward but the gynae ward. It may not seem significant now but it is. You see there were no midwives there so they refused to examine me to tell me how far I was dilated. It wasn't their job.

I was more freaked out by my waters going than anything else, I thought it as time but I was told it wasn't. I wasn't ready to say goodbye again. My contractions lulled at this point and the ward went silent. We had a private room and the window was to my left. It was a cold February day and there had been snow days prior butjust then, in the lull of the ward, the snow began to fall. It was not heavy but it still snowed. Just as quickly as it started, it stopped and I felt the need to push.

My littlest baby boy was born.

My husband and I had discussed whether we wanted to see him. I didn't feel strong enough to see him. My husband did and took pictures for when I did want to see him. He said he was tiny, just bigger than the palm of his hand. But he was beautiful. He told him we loved him and he was with his beautiful big brother who would look after him now.

Due to his gestation, they would only say he looked like he was a boy on the scan and I needed desperately to know my baby was the gender I thought he was. The nurses just said it is what you believed it to be. This is why it is so significant. There I was having given birth to my baby and they couldn't comfort me or find the words to give me some solace. He was what I thought he was. What a phrase. It still makes me angry.

My husband had a look and said it looked like boy parts.

I would not be doing this justice if I was not honest. I detached myself from his birth, I didn't want to deal with it. Not then. Not ever. But one day I would have to.

On the way home, we walked past the room where he was. I stopped and rested my head against the door. I whispered how much I loved him and that I didn't want to go without him. I felt pulled to stay with him, just there, outside the door. Because I couldn't see him. How much of an awful mother does that make me? I have had to live with that decision for the rest of my life to date.

I could not see him, I could not crumble, I did not want to have to deal with the fact, I was a mummy but to two angels.

Once again, we went to the Funeral Director, he broke his heart that we were returning to organise another funeral for our baby. We wanted them together, no service, just a simple, personal burial. We asked that our priest come and bless the grave and say prayers for them both.

As I got out the car for his funeral, I lost it then. My legs went and I couldn't move, I couldn't go and say goodbye. It was then it hit me. It was then that I wondered if I could ever walk again.

Nice, if you want to think of it in that way, the council had covered the dirt with rose petals. Just as his brother was laid on a bed of roses, now he was going to be. A while after, I said to my husband that it was nice that there were still petals left from when we buried Charlie. He chuckled. He said 'baby, they wouldn't have survived for so long, the council scattered them'. I was touched by their kindness and thoughtfulness.

My boys had each other, we didn't have them.

Darkness and Light

It was around the time of the positive pregnancy test that I realised I wasn't coping at all.

My husband had gone back to work a couple weeks after the funeral, he had to go at some point. Better be before I got too dependant on him.

As I look back and reflect, this is probably when my OCD started to kick in. I had to do the same things every day, made the day go quicker and gave me some sort of routine. Except when my husband frantically called me one afternoon from work.

Him: Where have you been?

Me: Down to the glass bin

Him: Why?

Me: I couldn't stand seeing them anymore

Him: Seeing what?

Me: His medication, his milk, his everything. Another reminder of another thing I don't have.

Him: You could have waited, I would have helped.

Me: Well it's done now. It looks so empty. Why us?

Him: I don't know.

Went to the GP. She was as happy as anyone could be when a grieving mother comes to them and says I am not coping but I have just realised I am pregnant too. It was a good thing that I was fertile apparently. I was put on anti depressants.

I checked that the midwife I had with the boy was the same one and called her. She was pleased and saw me straight away. I was referred back to the Fetal Medicine Unit to see the consultant but he wouldn't see me til I was 12 weeks. We had a scan at 8 weeks that we paid privately for. I was still detached.

I still don't know how I got through the minutes, hours, days, months past his death. We did nothing significant, just took each day at a time and did what felt right. My husband was made redundant a few weeks after going back to work following his death. Well, it was more, we are cutting you down from full time to part time to be more economical as we can then cut down on breaks if we have no full timers. Take the half post or the bit of money. He took the bit of money, it wasn't alot but, it the grand scheme of things, he was home with me.

We told everyone we were not going to bother with Christmas as it didn't feel right. I felt guilty a couple days before that he wouldn't see our twinkly xmas lights so I put the tree up, right by the window so he could see the lights, he was my bright twinkling star so he deserved to see the lights from us.

All too soon, I was back in FMU having the scan. The consultant said that he would do fortnightly scans on me as it would allow him to see any changes easier.

12 weeks was fine....

14 weeks - we were told was fine... 

but cardiology would be at the 16 week one

16 week was not fine

I hate it when doctors try to talk quietly, don't they realise that you are straining to hear. I don't know why, I could see it for myself. The left ventricle was not formed properly.

Quite

Simply...

Why Me?

Why Us?

They could not say for sure, if they had to, it was HLHS. Based on the scan it was COA, possible AS, but given my history it was HLHS. I was angry but not surprised though. Or just numb. I still cannot describe how I felt.

My poor husband, it was his birthday today. We came to the scan alone with the intention of going for some lunch after. I had to phone my best friend. I simply cried to her: 'I thought lightening didn't strike twice??'

As usual, she dropped everything. Raced to me. 

I didn't believe them; they were making assumptions based on my history. They couldn't determine it for sure. They offered a re-scan a few days later.

Same diagnosis. I said I didn't believe them still, I wanted a second opinion. I wanted to go to the best. They got us in to London that afternoon.

Met a lovely consultant. Well, given the circumstances. Wasn't made to feel like a second class citizen. He asked ME what had happened, right back to the boy's diagnosis. He asked me if I was a nurse. I said no, I just arm myself with knowledge.

Baby didn't play ball until the end. At the last minute, baby turned into the right position and the consultant said 'yessss'..... I almost believed it was good news!

He was frank and I appreciated his honesty with me, something I craved.

He looked me in the eyes and told me my baby had HLHS. From the scan he could also see other heart abnormalities but it is without a doubt, he could diagnose HLHS.

Baby Jones the Second, Baby BOY Jones the Second has HLHS.