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Messages - Ria1712

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1
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.

2
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.

3
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.

4
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.

5
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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6
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.

7
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.

8
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.

9
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.

10
TTC / Re: TTC buddy
« on: June 17, 2019, 01:45:46 pm »
Glad to hear your nephew is doing well.

I completely get where you come from, there were a few people that said to my partner about it being his last father's day before being a dad but to us he already is. Yes this is his first child but he's done more for Leo then some people that already have kids. I got him a card and a little present and wrote a message in from both me and baby. Mothers day this year was the first time I've never received anything, we had only just had the news about baby's condition so my partner didn't get me anything. Since I lost my son his dad had always sent me something even if it was just a message but this year he's cut all ties and didn't do anything. I sent him a message yesterday to wish him a happy father's day but got nothing in return not even sure he has the same phone number and tbh it hurt because like you said no one seems to count you as a parent when you didn't get to take your baby home. Its like when people say you wouldnt understand your not a parent or wait till your a parent but to me I am a mum and I have been to my little boy for the past 7 years.

11
TTC / Re: TTC buddy
« on: June 17, 2019, 08:36:48 am »
The wedding was great, but I was so uncomfortable so glad it wasn't a full day event. I was also very emotional think it was the pregnancy hormones as I had to stop myself crying during the ceremony. It also made us come to the decision that once baby is home we are going to start planning our wedding properly for in 2021.

Glad you met people that live close it's always nice to have friends close as your kids can grow up together etc. How is your nephew doing?

Nikkilou how are you doing?

12
TTC / Re: TTC buddy
« on: June 15, 2019, 07:03:01 am »
Honestly if he faints il kill him. 32 weeks today, its scary to think I only have about 6 weeks left. Today is my best friends wedding though and I'm so looking forward to it even if its going to be a long day with being in work after. Just not got dressed up in a long time and will be good to be a bit more then just a pregnant person.

13
TTC / Re: TTC buddy
« on: June 14, 2019, 07:56:37 pm »
Haha I'm so scared of Aaron passing out during my section. I've just told him to keep his eyes on me and behind the curtain haha. I've been told some classes really help but if not there good to build a support network.

14
TTC / Re: TTC buddy
« on: June 14, 2019, 11:43:08 am »
That's great that he is doing well Angela. Hopefully he will be back home again soon. Hope you enjoy your NCT class I cancelled my bookings as one was a tour which were now at a different hospital, one being breastfeeding but we have a breastfeeding nurse at the hospital we're at that will help more with expressing and one was a new parents one but we won't be able to do a lot of the things for a while. There meant to be really good though xx

15
TTC / Re: TTC buddy
« on: June 13, 2019, 10:59:13 am »
It's great that your scan went well Angela. I can't wait for ours next week. And sorry to hear about your nephew and hope he recovers quickly and gets back home. My god son had bronchitis when he was a baby and it was horrible to see him like it but obviously will be harder for your nephew with him being a prem baby.

I saw my midwife today and we have gone from 50th centile to above the 95th. I am so proud of my little man and how well he is doing.

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