Support thread for lo's with health issues

[going_crazy]

Hi ladies
May pop in from time to time if that's ok..... My LO is battling serious heart disease xxx

 

[Divinebeauty]

Em- Sorry to hear about the reflux, Ava has reflux pretty bad too, its aweful, seems like anytime she hits a growth spurt, it flares up again! I agree it is horrible when they don't know what is wrong with LO, it leaves you to wonder over and over what is going on.

Like with my little Ava's cyst, my doctor doesn't like to worry his patients so he is not saying much about it, I asked like does he think she will need surgery does he think its more into her skull, just searching for answers, but to no avail! He just says 'I don't know , dont worry though' And reffered us to neurologist!! I wish docs would speak their minds. I do know if they do say something wrong though or out of order, they would be in some situation!! So I know that's why they don't, but I still wish they did!!


Goingcrazy- Big hugs to you and your LO hun!

 

[Rockell8788]

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..

At least we don't have to be confronted with that awkward question in a few years lol

 

[Rockell8788]

Hi ladies
May pop in from time to time if that's ok..... My LO is battling serious heart disease xxx

Of course it's ok hun. How is your lo doing

 

[Ozzieshunni]

Hiyas! My little man has a condition called heart block. It was diagnosed in the 25th week of my pregnancy. The top half of his heart beats faster than the bottom. There's nothing structurally wrong with his heart, just the electrical impluse. He will eventually need a pacemaker put in, but for now, the cardiologist is pleased with his current state so nothing to worry about for now!

 

[Deeni]

Hi Ladies, I just want to say you are all great mommies and your LOs are so brave! It is so hard to see them going through medical treatments so young.

My LO was diagnosed with DDH (Developmental Dysplasia of the Hips) when he was screened by the pediatrician when he was 1 day old. Basically his left hip was dislocated and his right was dislocatable. On day 5 we took him to the orthopedic specialist who immediately put him in a harness that holds his legs in a froggy position to keep his hips in place. The condition and harness are not painful but it was sad to see him in it. It goes around his chest and shoulders and completely encloses his lower legs and feet. He has to wear it for at least 12 weeks and we are now in week 7.

At least we will never take our LOs health for granted.

 

[Ozzieshunni]

^^This is entirely true. I get very upset at threads where women are worried about having ugly babies and such. They should be thankful to have a healthy LO!

 

[jojo2605]

Hi ladies :wave:

Just wanted to say that all your LO's are very special and I totally believe that babies with special needs are born to the people who can deal with it and love their LO's and help them through it in the best possible way!!

My son who is actually now 22 months old was born with a condition called Imperforate Anus and he also had abnormalities to his right leg at the knee and foot which ended with amputation last year.

So I too can help if anyone is experiencing such things!

Things can be tough sometimes and there's nothing worse than watching your LO having operations and being in discomfort but if your LO's are anything like mine then they bring you joy every day

 

[Deeni]

Just wanted to say that all your LO's are very special and I totally believe that babies with special needs are born to the people who can deal with it and love their LO's and help them through it in the best possible way!!

Exactly!!!

 

[Rockell8788]

Hiyas! My little man has a condition called heart block. It was diagnosed in the 25th week of my pregnancy. The top half of his heart beats faster than the bottom. There's nothing structurally wrong with his heart, just the electrical impluse. He will eventually need a pacemaker put in, but for now, the cardiologist is pleased with his current state so nothing to worry about for now!

Oh iv heard of this. Must be nerve racking having to constantly watch him as he gets older to see if he's getting tired quick meaning he will need the pacemaker

 

[Rockell8788]

Just wanted to say that all your LO's are very special and I totally believe that babies with special needs are born to the people who can deal with it and love their LO's and help them through it in the best possible way!!

Exactly!!!

I agree completely

 

[Ozzieshunni]

Hiyas! My little man has a condition called heart block. It was diagnosed in the 25th week of my pregnancy. The top half of his heart beats faster than the bottom. There's nothing structurally wrong with his heart, just the electrical impluse. He will eventually need a pacemaker put in, but for now, the cardiologist is pleased with his current state so nothing to worry about for now!

Oh iv heard of this. Must be nerve racking having to constantly watch him as he gets older to see if he's getting tired quick meaning he will need the pacemaker

Not really. As long as the doctors aren't concerned, I'm not concerned

 

[Divinebeauty]

Hi ladies :wave:

Just wanted to say that all your LO's are very special and I totally believe that babies with special needs are born to the people who can deal with it and love their LO's and help them through it in the best possible way!!

My son who is actually now 22 months old was born with a condition called Imperforate Anus and he also had abnormalities to his right leg at the knee and foot which ended with amputation last year.

So I too can help if anyone is experiencing such things!

Things can be tough sometimes and there's nothing worse than watching your LO having operations and being in discomfort but if your LO's are anything like mine then they bring you joy every day

Hey hun, your lo's are absolutely gorgeous!! How is the little guy doing? And I completely agree that once I could never picture my kids going through an operation, and the sound of it just makes u shiver. Once you see them go through one everything changes you can see clearly JUST how strong your baby is and of course they do bring joy everyday!!!

Did your youngest LO have the same condition?

 

[Divinebeauty]

Hiyas! My little man has a condition called heart block. It was diagnosed in the 25th week of my pregnancy. The top half of his heart beats faster than the bottom. There's nothing structurally wrong with his heart, just the electrical impluse. He will eventually need a pacemaker put in, but for now, the cardiologist is pleased with his current state so nothing to worry about for now!

Hey hun! Does your LO have any restrictions to activities growing up? Sorry I am just wondering as I have a nephew who has heart block , and he was never able to do alot of physical exertion he was always told to settle down, even for a walk my aunt wouldn't let him walk very far before she would pop him back in the stroller. He eventually had a pacemaker placed at age of 6!! He was diagnosed in utero too!

I completely agree with people thinking oh my LO is ugly.. or big ears... or some type of imprefection. I say the same! AT least their babies are Healthy!!! Medical problems are no fun , but at least we do see the strength these little babies really have!!!

 

[Ozzieshunni]

Divine, there are no restrictions at the moment. His heart actually sped up at birth so they aren't overly concerned right now.

 

[Divinebeauty]

Oh that's so lovely to hear hun!!

 

[Ozzieshunni]

Thanks! It was def a relief after worrying my entire pregnancy!

 

[Jemma_x]

Hi ladies, i hope you dont mind me posting here. My LO has allergic colitis which is basically the same as ulcerative colitis but his is caused by his food allergies. He was diagnosed with a cows milk protein and soya allergy at 4 months and although he was a lot better he was still having alot of problems but noone would listen to me and he was just left until he was 20 months old were he underwent investigative surgery and he was found to have had a wheat allergy all along but because it had gone undiagnosed and he had been having wheat all the time it has damaged his bowel. For now he is on medication and a restricted diet and they are hoping gradually his bowel may heal but if not surgery will be the next option but that wont be considered until he's older.

 

[Divinebeauty]

Hi ladies, i hope you dont mind me posting here. My LO has allergic colitis which is basically the same as ulcerative colitis but his is caused by his food allergies. He was diagnosed with a cows milk protein and soya allergy at 4 months and although he was a lot better he was still having alot of problems but noone would listen to me and he was just left until he was 20 months old were he underwent investigative surgery and he was found to have had a wheat allergy all along but because it had gone undiagnosed and he had been having wheat all the time it has damaged his bowel. For now he is on medication and a restricted diet and they are hoping gradually his bowel may heal but if not surgery will be the next option but that wont be considered until he's older.

Hey hun,

Awee that is aweful left until 20 months old!! It's pretty sad that doctors won't listen to us moms, of course not all doctors are like this but I agree the majority are! I Am glad they did finally diagnose him though, although it took an investigative surgery!

How is he feeling now?

 

[Divinebeauty]

Update on Ava

Just wanted to do an update on Ava, I had her at the doctors and they were looking at her cyst on her head, and the dr seems to think that there may be a slight chance it goes into her actual skull, but they are leaning more towards a dermoid cyst in which they would remove because those cyst's can grow quite large and cause discomfort.

For now we are still awaiting to see the neurologist and get some tests done to see what is really going on with her.

This is really difficult as she has cradle cap right now a bit, and I don't want to just scrub at her head as I fear irritating her cyst. I also don't want to just leave the cradle cap in their and have it get worst! ugh.