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Messages - Ria1712

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1
TTC / Re: TTC buddy
« on: November 30, 2019, 07:40:35 am »
Hi, ladies sorry I've not been on in a while.
Angela so glad you and baby are doing okay and that breastfeeding is going okay.
Nikkilou, can't believe your 33 weeks, hope growth scans improve but as Angela says they aren't accurate for everyone
Knzault, did you get you BFP? A line is a line no matter how faint it may be.

I've had a very up and down few weeks. I got my business up and running and it's doing okay. I gave up Uni, it was just too much with it being 5 days a week and I was worried about going back to work. I decided to start doing 1 day a week at work instead using my keeping in touch days. My first shift is today. Its been a very hard time following people journeys for kids with needs, first I started to follow a baby girl who had the heart and lung conditions Leo did with other things so she did not qualify for surgery. She was her parents second baby with the condition, both not eligible for surgery. Her brother passed at 2 days old. Ivy was doing very well and they were hoping the decision on surgery would change, she was 12 weeks when she passed. Then my friend from uni lost her little girl 2 weeks ago due to the hospital letting her down in many ways. Jess was 2 and half and I went to her funeral yesterday which was so so hard but I just had to let them know they can carry on. On a positive we were accepted for ivf and I had a scan last week as I thought my period arrived. My levels were too high so it wasn't and turned out I had thrush, my period has no arrived but we missed the Christmas window. I'm a little glad in a way as it will help us as we aren't telling family this time when we start ivf or when we're pregnant. I don't want anyone to know till we have our scan at feotal medicine around 16 weeks but not sure il be able too as I bloated very bad with Leo. I also met with Leo's doctor a few days ago they don't think it's genetic as the amnio and swobs Leo had done before he died all came back fine. But they are sending us to the genetics team for piece of mind. And it did help me to ask the questions I never had answered before.

2
TTC / Re: TTC buddy
« on: September 26, 2019, 04:37:36 pm »
Hey Nikkialou, thank you I'm so impatient wish the appointment was sooner so I have a plan but it's not till November. How did you test go? And how is the pregnancy going?
How is everyone else? Things have gone a little quiet lately.
So i am now a masters student hopefully this will help me to keep positive and we are finally nearly done making up our hampers for the hospital. We just have to find some kids bedding that isn't too expensive so we can get as much as possible and then a few more baby toys that can be used at the bed space.

3
TTC / Re: TTC buddy
« on: September 17, 2019, 02:13:14 pm »
Haven't managed to get to see another doctor yet but thought I'd ring our clinic and speak to them. We are having an appointment sent out for in around 6 weeks time, she said it will mostly be just discussing things and maybe a scan and bloods to check my ovaries but that could be a different appointment. When checking my ovaries they will check my scarring internally to check how the healing goes but my partner has been massaging it for me and can no longer feel any scar tissue. We are still entitled to 2 IVF cycles too when we are ready which is great. Hope you are all okay.

4
TTC / Re: TTC buddy
« on: September 15, 2019, 11:13:00 am »
Yeah my anxiety was really high during pregnancy. I have suffered with anxiety since being young but I've never really spoke to doctors or anything about it because I don't want to be medicated. My check up was annoying I didn't feel comfortable so didn't ask about the heart scan. Don't know if it's just me but felt he was a bit insensitive as he read my file before I went in but was sat there with a big picture of his twins on his desk, he told me to call my fertility clinic to ask about if we are eligible for ivf if needed in future and to ask about if I can have a check on my ovaries. He said if they won't do it which they won't because we will need referred again but he said to try call first then to go to the drop in centre and see a gynae at the sexual health clinic but I wanted a referral so I don't have to explain things. I'm going to try see a different doctor this week I think. I've also been getting sharp little pains unsure if it's ovulation, normal or what but it's similar to the implantation pains I had with Leo so now I'm a bit worried that it's too soon.

5
TTC / Re: TTC buddy
« on: September 11, 2019, 05:36:26 am »
Thank you ladies, my heart is a bit of both I think. We had our genetics tested when pregnant and they couldn't see anything wrong in our genetics but a lot of heart condition can't be seen in chromosomes so I want to be checked. I have suffered most of my life with anxiety and have what's always been assumed as anxiety attacks so I just want to know. I have never had pain with ovulation but it is possible. I do think it may have been period pains as the women around me were all on around the same time so think my body was trying as had like orangy blood in my discharge. Sorry for tmi. My 6 week appointments today so hopefully will get more information and hopefully he will refer me to a gynae to just check everything as I have had cysts burst in the past, hope your all okay xx

6
TTC / Re: TTC buddy
« on: September 07, 2019, 10:23:19 pm »
 Hi ladies, I have thought about reading through or writing something over the past few weeks and I just found it too hard.
Tonight I've finally been able to, Angela so happy to hear you have your baby girl and that you are found a way with feeding. Hope everything else is going okay.
Nikkilou, glad things are going well now and that you are starting to feel more movement, just keep taking thing day at a time. We bought stuff for Leo from being about 9 weeks as I knew no matter what way it happened or when one day I would be a mum.
Knzault, I feel like I recognise your name, I first came to this group in 2015 so maybe I was around during your first ttc journey.
Missdyan, hope things are going well with you, Berk sound lush.
So update on where we are, we buried Leo on the 2nd, it was so hard to see him for the last time that morning and I just didn't want to leave. We had a good turn out of support and have done well to raise money to cover costs and to get some bits for the PICU Leo was in. We are putting together a basket of stuff for the nurses and I am making boxes up for new babies and parents going into the ward at birth. We had an amazing box to make memories with but I feel like it's important to make those memories from day one not just at the end. My partner has started college to help him do something while off work and I start my masters later this month. We are also raising awareness for Leo's condition as we hadn't heard of any of them and he was such a rare case, so far we have been in our local paper and the Sun online, we also have a contract with a media agent and could possibly having a TV interview to help us raise awareness as that is something so important to our family. When it comes to ttc, it is advised to wait 6 months but I have healed very well so far so my doctor has said we could be okay sooner as he understands how wary I am of contraceptives. I'm also arranging to have a heart scan to just check I have no underlying issues as it's playing on my mind and I am asking at my 6 weeks check to have a scan to make sure my scaring is healing well on the inside and to check my cysts due to cramping pain the past few days.

Hope everyone is doing okay xx

7
TTC / Re: TTC buddy
« on: August 15, 2019, 10:32:03 am »
Hi ladies, hope your all doing well and sorry I didn't get on to update. Leo was born on the 1st August at 10:40. He was just perfect and needed immediate intervention and surgery. He did have some complications but recovered well. Unfortunately after a few days he started to struggle with his lungs and got a suspected diagnosis of lymphangiectasia as well as his heart condition. They started steroids and other things to try help strength his lungs but yesterday was he's last day of them and they saw no improvement. They explored every option possible but he wasn't strong enough for surgery and there was no other options. Yesterday we got to spend to spend a perfect day with him being able to hold him for the first time, bath, dress him and create memories. He was just amazing and carried on fighting to the very end, but at quarter to 11 last night he passed away in our arms.

8
TTC / Re: TTC buddy
« on: July 13, 2019, 02:08:58 pm »
I agree with Angela 38 is definitely not too old to have a baby and a relaxed approach is definitely the best way.

How's everyone doing?

I'm 36 weeks today and only 18 days left to go, countdown is on as my back and ligament pains are getting a lot worse. Also sitting in a cinema for nearly 3 hours this far pregnant is definitely not a good idea, was so uncomfortable. We met with babies consultants a few days ago and they explained his surgerys and the rough plan we have in a lot more detail which was great. They have said they will look into us storing baby's stem cells but they will not do the treatment we were hoping for. It did sort of upset me a bit but I completely understand as it's still in testing stages in America and they do not have any evidence to say it will help him. My mum thinks we should speak to the specialist in America and go have the trial but I just think it's too risky, plus its a whole team of doctors we don't know and we wouldn't have our family around us or a proper income as my OH would have to take unpaid leave. So at the moment that croute stops here and we just have to keep our faith and trust in the doctors we have met so far and the others we will meet along our journey.

9
TTC / Re: TTC buddy
« on: July 06, 2019, 02:10:54 pm »
Yeah I wonder how others are doing too it could be since the app messed up as I can not access this through the app anymore and it's not that easy to find online.

We are having our section on the 1st August and hoping he doesn't need any surgery or just possibly the balloon so it's easier on his body as otherwise 2 OHS in a week or so would be really hard on his little body. My friend from my support group had her heart warrior last night, he's got the same conditions as Leo but not as severe so she was allowed a natural birth and he is doing well which is giving us a lot of hope too.

Missdyan, happy birthday to Berk and yeah it won't be long now till he's walking. We have already started talking about trying again after Leo, this time we're going with the flow no keeping track or anything. I don't think age is a massive factor especially with Berk only being 1, my mum was 39 when my little brother was born. I was 17 and she's said its easier in a lot of ways and it's helped her to become a lot healthier. If your worried on what people will think they will have an opinion no matter what, my mum was a young mum with me and my older brother and was judged and is judged for being a older mum now. I've had people ask me do I not think I should of waited longer and I'm 22, I finished my education bar my last year which I want to do after starting a family as it starts my career (teaching) and I've had time to enjoy myself. Everyone decides at different times in their lives when they are ready to have a baby and if age is the only thing stopping you then I would go for it.

10
TTC / Re: TTC buddy
« on: July 05, 2019, 08:16:03 pm »
Yeah I definitely feel a lot more together now Angela, had a few days of feeling in the dark and a lot of tears but now back to feeling positive.

Missdyan, we're still a little in the dark with this bit as we won't know till he's born. What we do know is he will go into the theatre next door and they will scan his heart, then either go straight into surgery or put his drip in and organise for it to be done with his second procedure. It's also a possibility that they will do a heart cath and insert a balloon instead which is a lot less risk then open heart surgery. Either way he will have his surgery at around 7 days and another at 6 months (this is the one we're requesting to add stem cell treatment too) and then when he's between 3-5. It's also a possibility at any point they could decide on a heart transplant too, it's a very rare condition so there is so much not know and every baby racts differently.

11
TTC / Re: TTC buddy
« on: July 05, 2019, 07:52:05 am »
Hi ladies,

Nikkilou, so glad your little one is doing well and still going strong. I agree WITH Angela, give yourself time to mourn the baby's you lost but also start to enjoy and look forward to your little one.

Angela, glad you are doing well and that everything is fine, I know someone who's baby messes around like what you have said it's always on a Thursday afternoon but not every week. She's put it down to she takes her son swimming and baby just must not like the atmosphere but obviously it is warmer around a pool. Obviously she still goes to get checked. I think we're lucky we've only ever had to go in once.

So I'm 35 weeks tomorrow, I seen my midwife yesterday who agreed with me in thinking I would have a new scan so is going to try get me booked in for one with my original consultant as he did originally want me to have growth scans. She said they may not agree as babys growth has been fine and was measuring back on his line yesterday. We have our health visitor appointment booked as she also chased that up for me. Plus I contacted our hospital that we will be staying at with baby and they have arranged a appointment for us to go sit down with the cardiologists and possibly the surgeon but he doesn't think he will make it so that we can discuss stem cell treatment and the extra heart defect. The defect they wrote down was a VSD which is a hole inside the heart, it isn't life threatening and says online it should correct itself but they didnt talk to us about it and they didn't take measurements. I am wondering if when we're at the hospital for our appointment if maybe they will request a scan or do one to be able to look into it but I'm not sure.

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12
TTC / Re: TTC buddy
« on: June 30, 2019, 11:06:42 am »
Hi ladies sorry I haven't been on in a while, I have been having a hard time at the moment.
Nikkilou, I am sorry that you lost another one of the baby's but hoping baby A keeps fighting for you. Its hard when your so early on to keep positive but atleast they are keeping an eye on you.
Angela glad to hear your doing well and that your nephew is back home too. It's amazing what babies can go through and they just keep fighting. How far are you now?
Nothing really to update on us, baby still cooking, and I'm counting down the days. I'm seeing the midwife on Thursday and going to ask about the possibility of another scan. I'm hoping since I was meant to have growth scans and would of had one at 36 weeks that they will do it as my anxiety is through the roof at the minute. I feel like I'm in the dark just waiting, with no real idea of what's going to happen. I have tried emailing the nurses that will be looking after baby about collecting his cord blood and stem cell treatment or to find out who I need to ask but I'm getting no reply. I've had a look at storing the cord blood privately but they say we need to make sure the hospital will allow that first before moving forward but I have no idea who to ask. If I wait till my pre op it may be too late so going to ask the midwife about that too. I've spent the last week really down and not sleeping because I feel like I've been let down, as I also noticed in our report from our last scan that they have added on a diagnosis of another minor heart condition but nothing was mentioned too us about it at all.

13
TTC / Re: TTC buddy
« on: June 21, 2019, 04:46:43 pm »
Yeah I'm meant to have 2 weeks left and only changed it recently because I started to struggle as I do lates twice a week. Midwife estimated 5 pound 1 last week and scan estimated 4 pound 14 yesterday. My section will be at 38+5 so still need to have steroid injections.

14
TTC / Re: TTC buddy
« on: June 21, 2019, 06:44:43 am »
I have to say I agree with Angela. I understand I may not have a full understanding of parenting as I didn't get a chance with my son but I still gave birth to him, I still heard his heart beat and he still changed my life. I am his mum and I always will be, in my head yes I will be a mum of 2 when Leo arrives but with how society is and even though a lot of people know about my first baby to everyone else Leo will be my only child. I just don't get when that will change, like what if we loose Leo after a month, year or maybe longer would we still be parents?

We had our scan yesterday and was gutted to be told that it would be our last one. I'm a little concerned as I know scans are more accurate but the weight is a few ounces lower then what the midwife predicted last week. I don't think they noticed as they didn't plot it on the chart so I might call my midwife to ask about it today. Our section is booked for the 1st August and his condition is unchanged, they are now saying he may not need surgery at birth as he does have some flow and it could open further when born but the team will still be ready and with us. Tomorrow will be my last day at work and honestly I am so ready, I am so tired and in pain I can't wait to just sleep.

15
TTC / Re: TTC buddy
« on: June 18, 2019, 05:09:36 pm »
Yeah tbh I just sort of deal with it on my own. I tell Leo about his big brother looking down on him and as you said it's horrible to think of all the milestones our angels would of hit. My little boy would of been 7 this year and I just can't imagine it, my life would of been completely different if I didn't go in to labour, I always just think another month and he may of made it. Ive had people ask over the years did I not regret getting pregnant that young and no I don't, yes it wasn't planned and I was terrified but I loved him and he helped me turn my life around. The only thing I regret is not telling the people I should of because going through it alone was so much harder. As much as it hurts that his dad has cut ties I knew it would happen one day, a lot of people were against us staying in touch and we were very close friends for so long after but we're now at different point in our lives.

My mind now has to be on Leo and what he needs because I can't loose another baby. Today was the first time my OH looked over at my phone whilst I was on my support group and was reading a post about a baby recovering from his 2nd surgery that will be Leo's 3rd and I think it really hit him. I'm glad it was the post it was as it was mostly positive and despite a healing wound from surgery and being on oxygen the little boy at 6 months old was sat smiling like nothing was wrong. It's amazing how strong babies are, everyone always says it will be horrible him not knowing what's happening but the point is he won't know any different and by the time he's older he won't ever remember his surgery's.

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