Support thread for lo's with health issues

[Rockell8788]

Just wanted to start a thread for parents who's lo's have health issues for us to talk about how we are feeling and discuss how our lo's are doing. Thought it would be nice if we could provide support for each other through the highs and lows.

My son has chronic unilateral hydronephosis he had major surgery at 5days old to remove 1cm of narrow Ureta he then had a catheter direct from his kidney for 2 weeks. Hes on 1ml of trimethroprim (evil stuff) each evening. He had a ultra sound yesterday which still showed dilation we have a mag3 nuclear test in just over a week to determin how badly damaged his kidney is. I'm feeling so scared and nervous for him and worried what results we get I'm expecting severe damaged. But I'm fully aware how lucky we are to have him with us

So if any of your lo's have problems please feel free to share your stories

 

[Rockell8788]

Bump

 

[sjb1985]

Awww, your son sounds like a little fighter, and what a strong mummy he must have. We have a few problems with Chloe, she has a dairy allergy and is also intolerant to lactose and soya. It caused her no end of problems when she was smaller but we're finally on the road to getting better with her. Its nothing compared to your little man though xx

 

[Rockell8788]

Thank you yes he's such a fighter such a laid back little man. What milk did you have to feed Chloe then as I assume not your usual formula or if you bf I assume you had to cut it all out. Glad she's Getting better now must be difficult watching everything you feed her not to mention worrying

 

[Divinebeauty]

First off, your son is a fighter!! and so cute too!! You must be one proud momma!!

I am going to join as my first son , had a brain tumour, and hydrocephaleus went through 2 brain surgeries. So i can help anyone who joins this thread, with those type of problems.

Also now my miss Ava she has a cyst on her head, and we aren;t sure where it is going, could be absolutely nothing but we are deffinitely being reffered to a neurologist, I also jsut found this out today... sadly I thought it might of been cradle cap I guess I didnt want to bring myself to think another neurological situation!!

 

[x Michelle x]

hi ladies
my little one has Congenital Hypothyroidism and spent the first week of her life in NICU all wired up on drips etc
If not caught in time this can cause slow growth mentally and physically but i am sure that as it was caught early and she was on Thyroxine from day 3 then hopefully she will suffer neither of these side effects (not that i care, i just want her to be happy!)
We attend a growth clinic at the hospital, started fortnightly and our next visit isn't for 2 months as they are so happy with her! We've always really worried about her weight but has has just gone from 9 to 25th centile and is 50th for length so we are really chuffed with that! She also has to have blood taken and it just breaks my heart seeing her so upset but i know it needs to be done, doesn't make it any easier though does it!!
I know her condition is nothing to compared to what you guys and others may be going through but i don't think it lessens the worries IYKWIM!
Big hugs to all of us

 

[Rockell8788]

First off, your son is a fighter!! and so cute too!! You must be one proud momma!!

I am going to join as my first son , had a brain tumour, and hydrocephaleus went through 2 brain surgeries. So i can help anyone who joins this thread, with those type of problems.

Also now my miss Ava she has a cyst on her head, and we aren;t sure where it is going, could be absolutely nothing but we are deffinitely being reffered to a neurologist, I also jsut found this out today... sadly I thought it might of been cradle cap I guess I didnt want to bring myself to think another neurological situation!!

Thanks hun your little man is a fighter too.
I'm sure Ava will be fine hun hopefully it's nothing. And if it's not you will cope amazingly just as you did with your son. Must has been terrifying watching your son go through 2 brain ops he's obviously one tough cookie. Has all his problems been resolved now or do you need have regular check ups.

 

[Rockell8788]

hi ladies
my little one has Congenital Hypothyroidism and spent the first week of her life in NICU all wired up on drips etc
If not caught in time this can cause slow growth mentally and physically but i am sure that as it was caught early and she was on Thyroxine from day 3 then hopefully she will suffer neither of these side effects (not that i care, i just want her to be happy!)
We attend a growth clinic at the hospital, started fortnightly and our next visit isn't for 2 months as they are so happy with her! We've always really worried about her weight but has has just gone from 9 to 25th centile and is 50th for length so we are really chuffed with that! She also has to have blood taken and it just breaks my heart seeing her so upset but i know it needs to be done, doesn't make it any easier though does it!!
I know her condition is nothing to compared to what you guys and others may be going through but i don't think it lessens the worries IYKWIM!
Big hugs to all of us

Wow what a clever little lady you have growing fantastic despite the odds against her. Is this a condition she will have for life sorry for my ignorance but not fimilar with the condition.
I know what you mean about the blood tests it was horrible watching Jake be poked with needles constantly. My mil had to go with him to have his iv line out as I couldn't take watching him in pain again. That sounds awful but it was his 3rd line in as many days and I was in shock from being transferred for emergency surgery
Not looking forwards to him mag3 lots to injections but thankfully they are numbing his hands, feet and elbows first so hopefully he won't feel anything. Still a distressing thing for us parents to see.
It's lovely to hear despite all our lo's problems they are all doing well. Although they are different they are similar in they way they shouldn't be going through it and it's hard for us parents to see them have to fight.
I still don't think the serious of what he's been through has sunk it yet only found out yesterday that there could be permanent damage. Just feel like iv been getting on with it since he was born If that makes sense

 

[x Michelle x]

Wow what a clever little lady you have growing fantastic despite the odds against her. Is this a condition she will have for life sorry for my ignorance but not fimilar with the condition.
I know what you mean about the blood tests it was horrible watching Jake be poked with needles constantly. My mil had to go with him to have his iv line out as I couldn't take watching him in pain again. That sounds awful but it was his 3rd line in as many days and I was in shock from being transferred for emergency surgery
Not looking forwards to him mag3 lots to injections but thankfully they are numbing his hands, feet and elbows first so hopefully he won't feel anything. Still a distressing thing for us parents to see.
It's lovely to hear despite all our lo's problems they are all doing well. Although they are different they are similar in they way they shouldn't be going through it and it's hard for us parents to see them have to fight.
I still don't think the serious of what he's been through has sunk it yet only found out yesterday that there could be permanent damage. Just feel like iv been getting on with it since he was born If that makes sense

Yip, she'll be on medication for the rest of her life. i think the condition can correct itself in puberty but thats rare. Her Thyroid gland doesn't produce thyroxine so she needs a tablet a day to add the thyroxine to her system. When she was born her neck was all swollen at one side (where the thyroid gland is) and that's how the doctors figured out what it was. Too little thyroxine can cause slow growth and listlessness and too much can cause restlessness and hyperness! Perhaps this explains why she has so much energy as she is on the lowest does at the moment!!
I think we forget about how much they have been through at such a young age, but as soon as she is old enough we'll tell her all about it and will be able to bribe her with sweets when she gets her blood done!
I think is the being "restrained" when they take her blood which upsets her the most - they take a wee test tube of it
We had to request they take it from her hand as squeezing it from her heels drop by drop was taking too long and she was a lot more upset at the end.
You're right, he wont feel it, and you'll be there soothing him and calming him down and that will help him immensely. Remember a dummy and a cuddly toy if he has a favourite!
Of course you have been getting on with it, its what us mummies do
try not to dwell on things like "there might be permanent damage". Yes, its a small possibility but he is such a fighter and he has you and a whole family around him to love him and to help you all whatever the outcome. Stay positive hun, don't upset yourself with what if's (although thats easier said than done) and just have a week of snuggling in pjs and lots of cuddles

 

[x Michelle x]

A 38 minute labour!!!??? bloody hell!!!

 

[Divinebeauty]

First off, your son is a fighter!! and so cute too!! You must be one proud momma!!

I am going to join as my first son , had a brain tumour, and hydrocephaleus went through 2 brain surgeries. So i can help anyone who joins this thread, with those type of problems.

Also now my miss Ava she has a cyst on her head, and we aren;t sure where it is going, could be absolutely nothing but we are deffinitely being reffered to a neurologist, I also jsut found this out today... sadly I thought it might of been cradle cap I guess I didnt want to bring myself to think another neurological situation!!

Thanks hun your little man is a fighter too.
I'm sure Ava will be fine hun hopefully it's nothing. And if it's not you will cope amazingly just as you did with your son. Must has been terrifying watching your son go through 2 brain ops he's obviously one tough cookie. Has all his problems been resolved now or do you need have regular check ups.

Thanks for your kindness! All his problems have been resolved thank goodness! He went through a few shunts to take fluid off the brain (hydrocephalus) and those were of course scary, he had some really scary times in the hospital too as on top of all this he suffers asthma as well.

So far he is 4 years old and just graduated his kindergarten and I am sooo proud of him they told me he may have delays, but he walked at 7 .5 months old.. sooo early. And he is actually pretty advanced in school!! so the outcome was amazing!!!

Thanks for asking!

 

[Divinebeauty]

Wow what a clever little lady you have growing fantastic despite the odds against her. Is this a condition she will have for life sorry for my ignorance but not fimilar with the condition.
I know what you mean about the blood tests it was horrible watching Jake be poked with needles constantly. My mil had to go with him to have his iv line out as I couldn't take watching him in pain again. That sounds awful but it was his 3rd line in as many days and I was in shock from being transferred for emergency surgery
Not looking forwards to him mag3 lots to injections but thankfully they are numbing his hands, feet and elbows first so hopefully he won't feel anything. Still a distressing thing for us parents to see.
It's lovely to hear despite all our lo's problems they are all doing well. Although they are different they are similar in they way they shouldn't be going through it and it's hard for us parents to see them have to fight.
I still don't think the serious of what he's been through has sunk it yet only found out yesterday that there could be permanent damage. Just feel like iv been getting on with it since he was born If that makes sense

Yip, she'll be on medication for the rest of her life. i think the condition can correct itself in puberty but thats rare. Her Thyroid gland doesn't produce thyroxine so she needs a tablet a day to add the thyroxine to her system. When she was born her neck was all swollen at one side (where the thyroid gland is) and that's how the doctors figured out what it was. Too little thyroxine can cause slow growth and listlessness and too much can cause restlessness and hyperness! Perhaps this explains why she has so much energy as she is on the lowest does at the moment!!
I think we forget about how much they have been through at such a young age, but as soon as she is old enough we'll tell her all about it and will be able to bribe her with sweets when she gets her blood done!
I think is the being "restrained" when they take her blood which upsets her the most - they take a wee test tube of it
We had to request they take it from her hand as squeezing it from her heels drop by drop was taking too long and she was a lot more upset at the end.
You're right, he wont feel it, and you'll be there soothing him and calming him down and that will help him immensely. Remember a dummy and a cuddly toy if he has a favourite!
Of course you have been getting on with it, its what us mummies do
try not to dwell on things like "there might be permanent damage". Yes, its a small possibility but he is such a fighter and he has you and a whole family around him to love him and to help you all whatever the outcome. Stay positive hun, don't upset yourself with what if's (although thats easier said than done) and just have a week of snuggling in pjs and lots of cuddles

Awee what an amazing little girl you have as well! So glad they caught this quick for you, as I know from experience wiht medical conditions, the earlier the better!!

Does she still have to have hospital stays or anything? Or she is just on a tablet and that keeps the condition under control? Did they find she had it while you were pregnant on ultrasound? Sorry I don't know much about the condition, but I am trying to learn!.

I know what you mean by the pricking for blood too, mason always had the blood taken from his heel as well and eventually I just said okay can we get it from somewhere else the heel is so aggrivating for him, and liek your little gal he hated being restrained that was actually worst than the needle itself!!

I like your thoughts on dont dwell on things. I really did I though omg I send my son through a brain surgery and something goes wrong, I am never going to forgive myself, but it was what was best for him and like you I thought really positive th entire time shed alot of tears and knew there would be a day when it would be all over with and we could live happily!!!

Your lil girl is so cute!

 

[Rockell8788]

A 38 minute labour!!!??? bloody hell!!!

that was similar to my reaction. didn't even get chance to leave my house. I sat there after In shock asking if it had really just happened and got told off for literally acting a though nothing had happened. I was attempting to clean the house up and walk my dog
If I remember rightly Devine beauty had a similar quick labour at home

 

[Rockell8788]

Well I'm feeling much better today finally got to tell my dh how the scan went as he's been away. We both said if theres damaged then there is, nothing we can do and if its bad it's not life or death as his other kidney is ok. Think i was just a bit upset as we wasn't told how bad his condition was until Thursday and I assumed the op would be a magic fix for him.

 

[x Michelle x]

Thanks for your kindness! All his problems have been resolved thank goodness! He went through a few shunts to take fluid off the brain (hydrocephalus) and those were of course scary, he had some really scary times in the hospital too as on top of all this he suffers asthma as well.
So far he is 4 years old and just graduated his kindergarten and I am sooo proud of him they told me he may have delays, but he walked at 7 .5 months old.. sooo early. And he is actually pretty advanced in school!! so the outcome was amazing!!!

Thanks for asking!

That's so good its all been resolved, i bet that was such a weight lifted!
As for being told there might be delays, that is the most annoying thing! We all know how different babies are but it just make you even more anxious for your LO to smile/roll/laugh and even though they might not feel like learning it, we panic all the more about these milestones! Walking at 7.5 months tho, i think you have a wee genius on you hands!
We didn't know throughout my pregnancy, i had a really good pregnancy but that ended with a distressed baby and an emergency section! Thank goodness we don't have hospital stays - a week after her birth was bad enough! And i refused a wheelchair as i was so determined to walk up and down to NICU to feed her, no wonder a few weeks later i ended up with an infected scar!
It is just a tablet a day, luckily i can crush it into a spoon of baby porridge now and not try and mix it with milk and syringe it down her throat - she actually learned to spit it back out at me, little madam!

I'm glad you're feeling better today Rockell - i remember crying my heart out peeling potatoes one night worrying about it all then me and OH sat and had a good talk. I think i'd been trying too hard to be strong and keep it all bottled up!

hahaha i'd be like that - OMG i've just had a baby but look at the mess of the house

 

[x Michelle x]

Your lil girl is so cute!

thanks! you'r two are sooo adorable!

I'm hoping for a boy next but any future children have a 1 in 4 chance of having CH so OH wants to wait a bit just too see how Tabitha does as she grows up

 

[Divinebeauty]

A 38 minute labour!!!??? bloody hell!!!

that was similar to my reaction. didn't even get chance to leave my house. I sat there after In shock asking if it had really just happened and got told off for literally acting a though nothing had happened. I was attempting to clean the house up and walk my dog
If I remember rightly Devine beauty had a similar quick labour at home

I sure did!! lol I was gonna post about that last night but I was so tired too type!! Haha yes, my labour was 2nd baby and very dramatic. ABout 5 contractions and then pushing baby out! I dont even know how long it was but hubby delivered ava and mason watched.. was a bit unreal to be honest!!! I had no idea it was going to be SO fast , my sons labour was 1 hr from start to finish , and doc kept saying I want to induce you due to fast labours, and I denied it over and over and what do you know, that doctor has something over my head now lol!! I did indeed have a fast labour lol was super scary though... and my poor son for having to watch!!! aghhh...

 

[Rockell8788]

A 38 minute labour!!!??? bloody hell!!!

that was similar to my reaction. didn't even get chance to leave my house. I sat there after In shock asking if it had really just happened and got told off for literally acting a though nothing had happened. I was attempting to clean the house up and walk my dog
If I remember rightly Devine beauty had a similar quick labour at home

I sure did!! lol I was gonna post about that last night but I was so tired too type!! Haha yes, my labour was 2nd baby and very dramatic. ABout 5 contractions and then pushing baby out! I dont even know how long it was but hubby delivered ava and mason watched.. was a bit unreal to be honest!!! I had no idea it was going to be SO fast , my sons labour was 1 hr from start to finish , and doc kept saying I want to induce you due to fast labours, and I denied it over and over and what do you know, that doctor has something over my head now lol!! I did indeed have a fast labour lol was super scary though... and my poor son for having to watch!!! aghhh...

We was lucky that the paramedics arrived with 8mins to spare and both our parents arrived as well which was a blessing as my little girl was frightened and was Trying to rub my back but I didn't want to be touch so asked if they would take her outside (my actually words was get her away from me) she saw enough to tell everyone that Jake came out mums minky as she calls it

 

[Divinebeauty]

oh geeze better than my LO, lol mine arrived on the kitchen floor and tied the cord with a shoe lace as suggested by paramedics... they were on the phone, and when they arrived I was already holding her on the kitchen floor. It was pretty traumatic I lost alot of blood, and she sucked in alot of blood so we were both transferred to hosp for about 2 days to recover... I told my son to go away too, was soooooo painful but he didnt listen lol.

As u say now he knows where babies come from, clearly!! ahh..

 

[emiliasmummy]

hi ladies i just read your thread and didnt want to read and run you are all such brave ladies with strong little lo's well done to every one ,my little lo doesnt have huge medical problems but has serve reflux and lactous intorlarent so having a few problems with her back and fourth to doctors its really hard when they dont know what wrong .

oh and i just wanted to say mherkes my little sister well shes 20 now has Congenital Hypothyroidism from birth she was born with out her gland completely she was one of the first cases in the northeast and wasnt diagnosed till she was 14weeks and she is fine no problems at all well apart from been a teenager lol she was tested every week for 5yrs and now can tell when her meds need increasing de-creasing ect just wanted to offer some hope that your little lo will do great give me pm if you want any advise my mum is practically Congenital Hypothyroidism nurse after all the hassle with my sister when she was little xxx