Pregnancy & Birth Clubs <
13/02/2015 at 08:51
Hi ladies. I've been hiding myself away since before Christmas, but thought I would pop back and update on how we're doing.
The 12 week scan in December looked fine, but the blood results that went along along with it were less so. I was informed while waiting for a flight at Heathrow that one of the hormones they checked was sub-threshold, and as a result I'd need extra monitoring. They wanted me to go along to the hospital that day, but as I was 20 minutes from boarding a flight 3 hours away from home that wasn't possible. So this obviously played on my mind throughout our Christmas and New Year trip.
We met with a consultant the day after we landed back home, and were told the risks from this particular hormone level - miscarriage, stillbirth, and pre eclampsia. After 20 weeks I would be given scans to monitor baby's growth approx every 4 weeks, and my blood pressure would be checked far more regularly than the average pregnancy.
On the same day, at 15 weeks, I started with HG. At that point I thought it was just a bad day for sickness, but after 3 days solid of throwing up and not even keeping down water, I went to the GP. In the last 5 weeks I've been through 3 different kinds of medication for it, barely escaped hospital admissions for IV fluids, and even though it is easing slightly I'm still over half a stone lighter now than I was pre-pregnancy. In the first week of HG I lost over a stone.
As if all that isn't enough to worry about, the 20 week scan raised flags about Sparkly Baby's heart. We had to then wait a week to see a consultant for her opinion, which was yesterday, and we've now been referred to the fetal cardiologist team at a hospital an hour away.
At this point we still don't know for sure what's wrong, how treatable it is, and what the outlook for Sparkly Baby is. We are terrified. Our appointment there is next Thursday, so another week of waiting and worrying.
I'd had a niggling feeling from around 14 weeks that something was wrong. I tried to convince myself I was just paranoid after our epic journey to get here, but I couldn't shake the feeling off. I guess it shows my maternal instinct works, right?! So that's where we're at for now. We have no idea what the future holds and I'm still too scared to start planning and shopping for baby. We're certainly going about all this the hard way!
ETA: The appointment with the fetal cardiologist isn't about checking whether there's a problem and there's no hope there isn't. It's been detected by 3 people now. It's about getting a confirmed diagnosis from a heart specialist and having a treatment plan in place before baby arrives - without which the outlook would be extremely bad. While we don't currently have a diagnosis, we do know it's a serious defect and will absolutely need specialist monitoring and treatment - we just don't know the extent of the problem because our local hospital doesn't have staff trained for this kind of thing.
13/02/2015 at 09:02
Oh ST. I'm so sorry to hear you are going through such a worrying time with it all at the moment. Scans nowadays can show you far much more than we used to know, but it doesn't half cause a lot of worry. For now I don't know what else to say other than I will be keeping my fingers crossed that everything looks okay at your next scan. Keep us updated and come on here anytime you need to talk. xx
13/02/2015 at 11:43
ST I don't know what to say, I'm so sorry you're going through this. Sending lots of vibes to you and Sparkly Baby xxxxxxxxxxxx
13/02/2015 at 12:31
Sorry to hear this ST.
13/02/2015 at 12:33
So sorry to read this ST, what a terrible time you must be going through. Sending lots of vibes to you and hoping that Thursday at least gives you some answers and an idea of what is ahead for you. Big hugs xx
13/02/2015 at 15:30
ST - I'm so sorry to hear about this. I'm sending so many vibes to Sparkly baby, and much love to you and your H. xx
13/02/2015 at 19:26
ST so sorry to hear you've had such a rough time of it so far and it's still not easy.
I'm mustering all the vibes I can for your appointment next week. Please keep us updated x
13/02/2015 at 20:35
Oh ST I'm sorry to read this update - it's just not fair after all you've been through. Sending lots of vibes to all the Sparkly family for the time ahead xxx
14/02/2015 at 17:40
Oh my goodness you must be totally exhausted. So sorry to hear your news. Sending all the vibes in the world xx
14/02/2015 at 18:44
Oh ST, I am so sorry that you are going through all of this after everything that you've already been through. It just seems so horribly unfair.... I will be thinking of you and Mr ST on Thursday and sending you all the vibes that I can for your appointment.
In the meantime, I hope that your HG is easing and that you start feeling a bit better soon. Look after yourself and please come back to let us know how you are X
15/02/2015 at 21:21
So sorry to hear this ST. Sending lots of vibes for your appointment and hoping the HG is easing x
18/02/2015 at 11:17
What a load of stress and worry ST. Sounds like you are being very strong for your baby, which is all you can do. Sending you further strength vibes and I hope you have lots of support. Hope the medical appointments are informative and helpful x
18/02/2015 at 13:59
ST I'm so sorry to hear about the stressful time you've been having. I will be thinking of you and your H tomorrow and I hope that getting some answers and putting a plan in place can go a small way to providing some reassurance. Please let us know how it goes if you manage to get on here.
I hope your HG is more manageable now.
Lots of love x
18/02/2015 at 22:51
Thinking of you both & baby ST.
God bless xx
19/02/2015 at 09:21
So much luck for today, you have been in my thoughts constantly. Sparkly baby is already a little fighter and you will get through this. xx
19/02/2015 at 10:23
Best of luck for today ST. xx
19/02/2015 at 13:20
Thinking of you today xx
19/02/2015 at 20:55
Hope it all went ok today x
20/02/2015 at 14:42
Thank you so much for your kindness and support ladies, it means such a lot.
So, I have something of a positive update... Baby has a condition called tetralogy of fallot. It's complicated to explain, so I hope this makes sense; there's a hole in the heart between the ventricles, the pulmonary valve is narrowed, and the aorta picks up a mixture of oxygenated and deoxygenated blood to pump around the body. What this means for baby is that they will need corrective surgery to repair the hole in the heart and to widen the valve, although this won't need doing immediately and will most likely take place around 6 months of age. If the baby isn't getting enough oxygen before reaching that age, they may also need a more minor operation to improve blood supply to the lungs.
Later in life, baby is quite likely to require further operations such as to replace the valve, and will need cardiac care throughout. We do feel really lucky that we're under the care of what is widely regarded as one of the best cardiac units in the country, and everyone we met yesterday was absolutely lovely and amazing and we feel really confident that we're going to be very well looked after.
There is a chance of further complications due to chromosomal abnormalities, but for now that's a bridge we'll cross if we come to it. At the moment we're just focussing on the positives: we've got a diagnosis, we know a bit more about the plan going forward, and there's a good chance of a happy ending. That's enough for us right now.
20/02/2015 at 14:50
I'm so glad you see that you have some answers from your appointment today. It sounds like you have some amazing support from the medical staff and I hope that continues as things progress for you.
I'm still sending you lots of vibes xxx
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