Will be 37 due in April 2016 anyone else?

[Qmama79]

Appointment is tomorrow. I'm pretty nervous. You want yr kids to be healthy and give them the best chances in life. 😞 There are worse conditions in the genetic lottery, but nevertheless I feel down.
It's hard to put up a brave face fr mil as well. I just want to cry. She leaves Saturday.

Q I'd doing great. Giving big grins ...

 

[Bekah78]

Must feel helpless at the mo. You'll hopefully feel much better about it when get a clearer idea what it is you're dealing with and how it can be managed. Often it's the unknown that's hardest to deal with. Glad q doing well though. Sending you big hugs. Xx

 

[Qmama79]

VLCAD will become part of our lives. That means a non-fat diet (no cheese or French fries ... EVER!) & hospital visits upon common illnesses to prevent muscle damage😭 for our littlest boy. I knew what was coming last week...but it's hard to hear. Breastfeeding will be built down and replaced by a special hospital formula with medium chained fats. But, he'll live a 'normal' life ... I now just have to hope he'll be a nerdy kid, because he'll face some challenges if he's into sports as he has to fuel himself up with sugar all the time...

I'll be the only mum in town who urges her kid to eat sugar a go-go.

Aaargh... been crying lots today.

They poked Q in the arms & hands 6 times today to draw blood & they still couldn't get enough. I couldn't stop crying... I really hope we don't have to go back & do that again. They sent of the little amount of blood they got to a lab. FX they'll have enough.

 

[Bekah78]

Bigs hugs Qmama. So sorry you had such a difficult day.

Good news to hear it's manageable and q will be able to live a normal life. Sorry that his requirements are different to other kids, the only plus is this will be a lifestyle that is developed from the start so will be second nature. He doesn't have any habits to break.

Hope the switch from breast milk to formula goes ok and that they managed to get enough blood to do the tests.

We're here for you anytime! Xx

 

[penelopejones]

Q, sorry this wasn't the news you wanted. I'm sure this is a really tough thing to get used to, but I'm glad it is manageable and the prognosis is good.

How are you doing, Bekah? And All, how's your recovery been?

 

[Bekah78]

We're doing ok thanks. Had to get gaviscon for Erik as he seems to be suffering with reflux. Hopefully it'll help him and he won't be so sicky after feeds or get so worked up and upset. He slept for 6 hours last night though. Hoping get a few more nights like that but not holding out much hope as probably a one off.

 

[allforthegirl]

OMG I don't think any amount preparation can make this easy. I feel for you Q

If this were me I would be so dang upset that they told me to stop bfing. How can a man simulated formula be better. It would be very hard for me to swallow. I would be consulting the bfing experts first. You would think a mothers milk is the perfect "formula" for digestion. Then again I'm not the expert.

Gosh I remember the poking over and over. D had tons of tests too in hospital, and they had to keep coming back for more. His foot was so scabbed up. DH wanted to punch the tech.

Like B said we are here for you.

 

[Qmama79]

It makes sense in a way; Bm is full of long chained fats. Those are the fats he can't do anything with. He can't transfer them into energy & a high quantity of those fats will damage liver & other organs because he has no enzymes to make them useful. For now they are acknowledging the importance of Bm fr developing immunity & results of tests will determine how severe & hence how aggressive food restrictions will be.

It is one of those rare metabolic freak diseases.

 

[penelopejones]

Bekah, let me know how the gaviscon works. Frankie was on Zantac but it wasn't really helping. I've tried all sorts of other solutions, tweaking breastfeeding and the tongue tie and so on, but nothing is really working. He did sleep for 5 hours last night which is his longest stretch so far, and then went from 12 to 4:30 before waking up again! Part of it is that I've gotten used to his grunting and can sleep through it better! But I wish he would stop grunting and clearing his throat all night. I'm going to ask about switching him to a different medication on Friday when he has his 2 month check up. I figure I will try it for a week and see if it makes a difference, and if not, no harm done and we'll just keep doing what we are doing.

I tried putting Frankie down for a nap twice today instead of wearing him. Both times he went down okay, but then woke up after 20 minutes. That seems to be his maximum, and then something jolts him awake or he realizes he is alone or who knows what.

Yeah, it makes sense about bf'ing given the long chain fatty acid issue, unfortunately. I think there are definitely cases where formula is needed, and this is one of them!

 

[Bekah78]

I will do. I think it may take a day or two to calm things down, assuming it does work. I've been recommended gripe water too so will probably try that too.

Must be frustrating qmama when you've worked so hard to get q breastfeeding but at least he got the first feeds from you which are the best. I wish I'd been able to do that for Erik but wasn't meant to be. He is thriving on formula though. Just need to sort out his reflux.

 

[allforthegirl]

Ahhh well I guess then. Guess that is more me and my own issues stemming from the hospital fighting for me to stop nursing. Sorry if that got in there. How ever you need to feed him to keep him healthy is ultimately the best for him. I sure hope it is a very very mild case.

D doesn't have reflux anymore. It went away as soon as my supply lessened. He seems to have it bad if my supply get crazy. I block fed for two days and now he seems to even finally fall asleep at the breast, which was a very rare case before. I love that he know can comfort nurse with out screaming out in pain. I hope the Gaviscon helps better.

 

[penelopejones]

Reflux is tough. With my daughter, she just had to grow out of it, really. Is Erik a "happy spitter" or does he seem to be in pain?

 

[penelopejones]

I tried block feeding for a day and v it seemed to help. Maybe should continue for another day. I have one side especially that is over eager.

 

[allforthegirl]

I tried block feeding for a day and v it seemed to help. Maybe should continue for another day. I have one side especially that is over eager.

There are a couple ways to block feed. What way did you use?

We did more of a intuitional block feed. I know they say switch great every 3 hrs with one way mentioned, but some times he would nurse more often on one side every once and awhile then....so I just did two feeds on one side, then switched. You could always try the pump and empty both sides first thing in the morning, then do a feed or two per side for a day see how the next morning is and if that wasn't enough try one more day. But remember once you are comfortable then stop block feeding as undersupply is way harder to fix than over supply.

 

[penelopejones]

I tried the 3 hour method but found the same thing--sometimes one would end up getting used more than the other. My right side seems to produce more so that was sort of counterproductive, because I'd like mainly to reduce supply on that side. But if I don't nurse on that side, it gets engorged and then when he feeds on that side, he ends up spitting up even more. I try to let some of the initial letdown spray out first.

I was starting to feel more comfortable, but then last night Frankie slept longer than usual (he had one 6 hour stretch between feeds and one four hour stretch, which is unusual), so then both breasts got really full.

Any suggestions? I think I'll try the twice on one side way as that is easier to remember than watching the clock.

 

[allforthegirl]

My LLL leader said if you get too full on any side at any time before its time to feed on that side to only nurse enough (or pump, or manually express) to be a bit more comfortable and then continue on the good side. There were a couple days I was feeling like unjust gave birth full. My areoles were even swollen all over again so weird. That was my plan if I was getting too full on the blocked side. I would maybe try nurse one on full side twice or three times on the ok side. Again go slow. You will able to slow it down.

 

[Bekah78]

What a night. Erik has been awake every hour. I'm exhausted. Complete opposite to night before when he slept for 6 hours. Not sure if it's the change to his milk or just one of those things.

I've also found a large lump in my right breast. Will have to get an appointment to get that checked out. I keep telling myself that it's probably pregnancy related or gland inflamed after trauma of surgery related but my mum and aunt have both had breast cancer so I can't help but worry.

 

[Bekah78]

What's block feeding allforthegirl?

 

[penelopejones]

Oh, Bekah. Those kinds of nights suck. Is it the reflux? It is so hard to predict. Frankie had a good night two nights ago (slept for 5 hours and then 3), and then last night he was up a lot and nursed every couple of hours after 1 a.m. I wish there was a way to know what went right the nights they sleep well! I remember with my daughter, I would try to do everything the same if she had a good night, down to the same pajamas, but it never worked. Gradually he'll get into a routine though. Hopefully you can get some naps in during the day!

And I hope the lump is just something pregnancy related. Could it be from your milk drying up or something?

Am going to try just feeding twice per side before switching to the other side. I think both sides are actually overproductive. I fed him this morning on my left side (the less full side) but Frankie still spat up pretty large amounts of milk afterwards and is all gurgly and grunty now. His weight gain has been pretty dramatic and I think it is part of the oversupply issue. I'm sure he is past 13 pounds now.

 

[Bekah78]

I think it is reflux related. I started him on gaviscon yesterday so could just be adjusting to that. He's had a couple doses today and been better on it so hoping it starts to work soon.

I read somewhere that glands flare up if body been through something and that if its above waist levels it's the ones linked to the underarm that flare up. I'm wondering if it's a flare up following the ops I had etc. I hadn't noticed before but doesn't mean it's not been there for a couple weeks.