Happy Angel Day Gideon

I feel a bit crap for not posting earlier. His birthday passed in the whirlwind of life, we released balloons, made cake, went out for the day. He was remembered in the hustle and bustle of our lives, in the excited squeals of my two children, in the loud singing of Benedict shouting ‘Happy Birthday’ and blowing out his candles. We remembered. And we always will.

Today, we had a cream tea in honour of Gideon, well a dairy free cream tea. It was lovely. I miss him so much. I see him the laughter of my children, the empty space at the table, the brief moment of silence where I catch a breath.

The 5 years have passed both fast and slow, but my heart still yearns for him. My arms want to hold him close, my tongue wants to tell him how much I love him. I’m not in the trenches of grief anymore, I am not drowning in the waves of tears and pain, but I will never stop missing him.

He should be here.

He should be 5 years old and his laughter should fill the house as he plays with his brother.

Tomorrow, I will visit him again in the cemetery but he is not there.

I will take daffodils because he was born in spring in Wales, but he will not see their bright yellow joy brightening the small white stone that bears his name, nor smell the heady scent of spring.

In my mind he will always be 1lb 15oz.

My tiny warrior, always with us. Always loved.



New Year’s Reflection

Yes, I’ll do it. I’ll reflect on my utter lack of blogging last year. Sorry, I find it hard to get the right time to finish a blog post. I can start a hundred, but never finish them, so here we go. Questions

1) What was the best thing that happened this past year?
Juliette came into our lives. I love her immensely, she fits perfectly I into our lives as if she had always been there.

2. What was the biggest challenge?
Severe SPD and a long and painful labour, but also coming to terms with the fact that I have another “colicky” baby. I love her, and I love Benedict, but the intensity of the screaming definitely causes stress and it’s hard to accept that I’ll never have a chilled baby as Juliette has to my last.

3. What else brought you joy this year?
Finishing my degree. I’ve been working on it for ages, I knew I was coming to the end but I worried I would struggle to finish with having a new baby too. But I completed and I now have my Open University Degree

4. What was an unexpected difficulty?
My weight, I thought I could get back on track after Juliette was born, but it’s not worked that way. I do NOT lose weight with breastfeeding and the colic stress makes me eat too. I have also struggled with depression.

5. Describe 2015 in three words
Joyous, Challenging, Discovering

6. In 3 words, how would your spouse describe your 2016
Painful, joyous, loud

7. How would your spouse  describe their 2015
Difficult, Fun, Exciting

8. What were the best books you read this year?
The Magic of Tidying Konmari

10. How did you grow emotionally?
Learning to accept what I cannot change

11. How did you grow physically?
Outwards, by far too much

12. How did your relationship with your other half change?
It’s definitely been a challenge for our relationship, as having a child always is, but I hope to work on our relationship and work on being present with each other.

13. What did you enjoy most in home making?
Clothing, I enjoyed sorting out clothing that gave me joy

14. What did you find hardest in home making?
Organisation, too much stuff and not enough space

15. What did you waste most time on this year?
Facebook and baby wraps. SO much time wasted on looking at both

16: What was your unnecessary extravagances this year?
Buying baby wraps, too many, many more than I need.

18. What was a good use of time this year?
Playing with Ben and finishing my degree

19. What have you learned past year?
That you can’t change people. They are who they are.

20. Sum up 2015 in one sentence.
Always persevering, when times are difficult. But lacking in self control when it comes to spends and eating. A lot.

21: Sum up your goals for 2016 in one sentence
Mindfulness, taking the time to live in the present and act with mindfulness in my finances, eating habits,  parenting, home management and relationships

This is 4am

Well this is a long overdue post. I am writing this while sitting in bed breastfeeding my little girl. Juliette was born on Monday 24th at 1:04am, weighing 8lb 3oz and measuring 20.9 inches. My biggest baby by far, it has been a whole different experience having her.

Labour was induced at 40 weeks as there was no sign of anything happening. But they inserted the pessary and in an hour I was getting contractions every 2 minutes for 45 to 55 seconds. I laboured like this for 10 hours, sometimes they petered out, sometimes they came quick and fast. By 10 That night I was already exhausted but I felt the contractions were strong enough for active labour. I was struggling through them. I persuaded someone to check but I was only 3cm with waters bulging.

No one felt the need to rush but as I was group b strep positive and with awful veins they moved me to a delivery suite. They took at least 7 attempts to get the vein and by that point the contractions felt unbearably strong And were coming in top of each other. By the time my husband arrived I was struggling. The midwife was suspicious of my very strong contraction, coming every 1m20seconds and lasting a minute each, as I was only supposed to be 3cm and they had removed the pessary. She kept asking if I had pressure.

I had been there an hour and knew I’d need some pain relief. 12 hours of contractions had wiped me out already and I figured I was 3 or 4cm. So one shot of diamorphine later I was shocked to be told I was 7cm. The meds helped And I was able to even able to nap between the contractions. Suddenly less than an hour later the pain was unbearable. The midwife was confused but I felt something coming, my waters broke and that was swiftly followed by me shouting “she’s coming” as less than 3 minutes later she was born. The midwife barely had time to get her gloves on.

Because of the speed of the birth and the position I was in, I tore horribly. It took a lot of stitching to repair it all. I was still high from the drugs and I’m guessing Juliette was too. She screamed for nearly 24 hours non stop And had some bruising from the birth. I couldn’t stand up alone until well into the next afternoon and vomited when i tried plus I’d needed an injection to help stop the bleeding. Its was all too fast for the antibiotics to work for gbs so we had to stay in for monitoring.

All in all, not the birth I had hoped for. But she’s here and safe and that’s what really matters. She’s amazing. She has an amazing spirit and at 3 days old, holds her head up to look around. We are struggling with nursing a bit but that’s ok. We are working on it. She is gaining weight but isn’t overly happy and has many of the same issues as Benedict did. We are trying to figure out if there is anything at all in diet that could possibly be causing issues, otherwise we might need to try hypoallergenic formula.


I am doing ok. I’m tired, in the last trimester I had severe itchiness from my undifferentiated connective tissue disease and it hasn’t gone away. My legs and arms are a mess.

I’m also still waiting on an urgent scan of my thyroid after a large swelling appeared on one side. Urgent means nothing on the nhs really.

Right now we are bed sharing. I’m too exhausted not to. But I don’t like it, it makes me nervous and asap she will be sleeping in her moses basket.

That is about it for now really

Undifferentiated Connective Tissue Disease

And that, ladies and gentlemen is what I have. Yes, I do, after almost a decade, have a diagnosis. My latest rheumatolgist asked me enough questions, read through all my recent blood results and there it is. You can read up in it here UCTD. Basically, my antibody tests all show a connective diease (ANA, Anti RO, ANCA) and my symptoms are typical of a connective tissue disease (CTD). BUT I do not meet the necessary criteria for a diagnosis of any one CTD, like Lupus or Raynauds. Sometimes, people with UCTD will go onto develop full blown lupus or equivalent, but since it’s been…relatively stable it’s more likely it wont attack my organs in the same way Lupus does. Photosensitvity is very common with UCTD and that’s good to know.

The criteria are relatively straightfoward, a positive ANA on two occasions and symptoms suggesting UCTD…so really the diagnosis could have been made a long time ago, especially with the symptoms.

  • arthralgia (joint achiness);
  • arthritis (joints that are swollen and hot, often with redness of the overlying skin;
  • rashes, usually on the face, which can worsen due to sun exposure;
  • alopecia (hair loss);
  • Raynaud’s phenomenon (color changes in your hands and feet in response to cold);
  • oral ulcers (sores inside the mouth);
  • xerophthalmia (dryness of the eyes due to decreased tears);
  • xerostomia (dry mouth due to decreased saliva);
  • low-grade fever (usually under 100o f);
  • photosensitivity ( development of rashes or other symptoms after sun exposure).

I have everything apart from swelling of my joints. It’s annoying it took so long to diagnose, but here we are. My treatment of hydroxychloroquine is appropriate for UCTD too, so I’ve been told to increase my dose and she’ll see me in July.

Baby is doing really well, I’m 25 weeks now, no signs of heartblock, and she is leaving the danger period for that anyway. There is still a chance of neonatal lupus, but it’s small and we know to look out for it. She is measuring on target, and I’m getting scans every four weeks. I have a retest of my gestational diabetes at 28 weeks. I passed the last one so well, that I’m hoping for a similar result but the weight gain has been too fast this time.

Today, we went to Gwyrch Castle, a mostly derelict 19th Century ‘castle’. But it was really atmospheric there, such a shame it was in such a state. I actually did the entire thing in a wheelchair, my husband was exhausted. Fun though

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And here is a picture of little Joey.


Happy Angel Day Gideon

4 years ago today, was the hardest day of my life. I had to say goodbye to my wonderful baby boy. We had only met 17 days before, but I felt as if I’d known him forever, and forever we will remember him. I know I think of him every single day of my life, some busy days go by and I realise I haven’t thought of him, but he will be the last thought as I close my eyes at night. My angel. As I look over at Benedict sleeping, I think of Gideon, so far away, and I remember all the time we spent together. I am proud to be his Mama.

Today, we went to the Seaquarium – I went by wheelchair as I’m 21 weeks and it’s a scary time, plus my SPD is very severe. Benedict loved the Sea Lions but was a bit uncertain about jellyfish and sharks (because he knows that they can hurt from Octonauts). Then we decided on the spur of the moment to take him on some rides on the little fun fair along the promenade. He went on a helter skelter and a little rollercoaster with his daddy, and then we had chips at a little cafe. He thought it was all brilliant, but he still said he loved the Sea Lions best.

Overall, it was an enjoyable but quite a hard day, I felt close to tears sometimes, but we had a lovely time and we released a balloon at the beach . When we got home I made gluten and dairy free ice cream brownie cake, Benedict sang happy birthday, I did suggest angel day, but he knows birthday, so we sang that.

There are some pictures but my phone isn’t allowing me to access them, so I’ll add them another time.

Happy Easter

I’m 20 weeks today. So half way (or more than halfway as I doubt i’ll go full term). It is also Easter Sunday and so I made Benedict an Easter Egg hunt, he searched around the garden for things, mainly small sweets and an Easter egg and chocolate bunny. but he preferred the stickers, he doesn’t eat many sweets or much chocolate, when he does he only has a bite or two. He had a good day in the garden with daddy and Nana, while they did gardening, I cannot do much of course, so I knitted. A blanket for this little girl. I can’t knit anything more than a blanket at the moment, but I need to relax a bit, so I’m knitting a sampler blanket.

Jpeg Jpeg

I have my anatomy scan  on Thursday, and an appointment at the high risk clinic on Wednesday. It was meant to be the diabetic clinic, but i did my GTT on Thursday morning and I tested my own blood after the two hours and it was only 5.1!! Which is amazing, so I think somehow I passed! No diabetes. At least for now, but by the time they took it it was over 20 minutes, and 5 stabs later. Plus a long walk to find a better phlebotomist. Silly veins.

But I do have the anti ro to consider, and baby girl needs monitoring for heart problems. I’m just glad I have my own doppler to keep an eye on her heartrate, because due a “mix-up” with my rheumatologist, I’ve been unmonitored. My rheumy wrote to my GP and told them my tests were all negative. My consultant checked for me, and my anti ro is positive, my ANA is 1:1280 and I have p-anca. So, hardly negative, so I’m hoping to see a better rheumy as a matter of urgency.

The anti ro can cause heartblock, so I’m monitoring my baby for bradycardia daily. Autoimmune wise I’ve not been well this pregnancy, better than not in pregnancy but I’ve felt a persistent low level flare, and of course the sun doesn’t help. I just need to get another 17 weeks and I baby can be safely here.

a link about Anti ro for those interested. It doesn’t mean i have SLE (lupus) for definite, but with the ANA and my symptoms, it seems a fairly straightforward diagnosis.

And here is a nice photo of the fog tonight. It’s very creepy indeed, I can’t even see the ocean from my window.


Happy 4th Birthday to my Gideon

On 30th March, my wonderful little angel would have been 4 years old. If he was going to be traditional schooled, he would have been going this September. I think he would have been a very excitable little boy running around, playing with Benedict, causing chaos and filling my house with noise and laughter.

But he’s an angel. I don’t know what he looks like, or anything about him. I can only dream of what it would be like to see him again, and try to remember every tiny detail of his little body and face. I can only imagine the kind of boy he would have been and how different our family would have been if he had survived.

I made him a cake. An owl cake that Benedict chose from pinterest.


We usually release a balloon on our local beach, but apparently holding onto a balloon was too difficult for my husband and he lost it before we got it back to the car from the shop. So no balloon release today, it breaks my heart. I know Gideon doesn’t really mind, but I worry he might think we have forgotten, or not bothered with his balloon.

But we had cake. Benedict offered to blow out the candles for him, and we sang happy birthday. And next year, if all is well, we’ll do it all with a little girl too. With extra balloons. That I will hold onto.


So happy birthday Giddy yums. Words cannot describe how much I miss you or how sad I feel that you cannot be here today. But you are always with us, and we will love you forever. You have sent us not one, but TWO beautiful rainbows and both of them will know all about you and celebrate your life with us.

Today, Benedict asked “where is Giddy?”

Dancing in the clouds, my love. He is dancing in the clouds.