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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

Never challenge an autistic person to *prove* you wrong. :P (warning graphic pics)

Posted by on Jul. 20, 2014 at 11:33 AM
  • 40 Replies
10 moms liked this

 I was told micro preemies couldn't be breastfed.  They had all these reasons, your milk won't come in, your body thinks you miscarried, pumping for weeks is too hard, they can't grow on just breastmilk, they won't latch, they won't have oral development to nurse... the list goes on and on.






This was a few days after he was born..... He's come so amazingly far.













Did you know when I gave birth at 24 weeks, I Was told repeatedly breastmilk was best, and they were happy I was trying so hard to pump, they warned me, milk doesn't often come in when you give birth at that stage, and not to be upset if I didn't make enough since my body probably thought I miscarried my twins. I survived through the death of a baby at 3 weeks old, and made it another 10 weeks, the whole time pumping around the clock exclusively.

The doctors warned me he was a micro preemie and most likely wouldn't breastfeed, but it's good I was pumping milk. I told them I was patient, and I had a plan and I'd adapt to him to make it work if they'd just give me a chance.  The more they told me I *couldn't* - the more determined I was to prove them wrong. When I felt like giving up - that determination to prove them wrong, came in handy in talking myself into not giving up.

They told me he couldn't grow on just breastmilk because micro preemies need fortified to gain weight. I asked them to hold off on fortification until we provedhe 100% needed it. That as long as he was gaining, why would we give him something when he already had belly issues?

Now, were still having issues with getting his volume amount back up after his final belly surgery. but guess what happened this weekend?

I was told I was the first mother they've ever seen nurse a micro Preemie and be so determined to breastfed despite everything we've been through together with my baby. We still have a long ways to go with his lungs, his stomach and getting him home.... but it was a start.

I pumped before we nursed, just to see if he'd even take it. I'm now bugging them about trying to nurse next weekend for a feed, and figuring out what they'd need for it to happen, and what I can do to compromise it so we can try it in a way that meets his feeding needs (he's getting tiny amounts right now, so I suggested hand expressing a small amount after pumping as his feed, rather then letting him get a gigantic amount.)

I have an SNS I bought for supplementing hind milk if needed for weight gain when I bring him home, I just ordered and bought my own baby weigh scale, so I can keep track of his weight at home since I don't trust random scales at the doctors once he's released. I'll stock up on syringes too to do some syringe feedings in the first few weeks if he's too tired to nurse.

I still have worries in the back of my mind, since they spent the last 13 weeks preparing me for the worst, (i.e. him dying too, never being able to get my milk in, never being able to breastfeed, him dying in surgeries.... ) I just wish for 5 minutes, I could feel like it's going to be okay and all this hard work will pay off, and they'll stop scaring me with negativity. He and I have overcome so much to get here, I'd like to focus on the positives.

We are getting ready to start talking about having team meetings with everyone involved to get on the same page with the breastfeeding thing, they really didn't believe I'd be able to do it.

Now that were here, i'm throwing them for a loop, he nursed, he suckled, I checked his mouth and we were able to confirm he doesn't seem to have any lip, or tongue ties (at least not obvious ones.) and when he latched, I was able to get him to latch correctly in his sleep.

He likes to suck, he's enjoying his oral feedings with the syringe, and is rooting and wanting more. He's got a suck swallow breath reflex that works well enough to not aspirate a small syringe feeding, it's a start. it's a big milestone.

Now, I'm just trying to process the upcoming battle for figuring out what comes next. They are so bad about telling me "this is what we need for him to be ready" I know he needs to meet certain milestones, I just wanted to know what they were... so instead of asking them to give me generic answers, I just flat out asked them...

If he meets no apnea episodes for a week, wall oxygen or off it completely and up to 50ml for a feed every 3-4 hours, can he go home?

and that's roughly what they are looking for besides being stable with destats, but he's getting there, the only time he really destats now is when he rips out his oxygen from his nose. LOL

I'm just processing, because the idea of sitting down with a big team of people in about 10 days all by myself to come up with a plan for feeds, get everyone on the same page since i'm the first mom most of them have ever seen breastfeed a micro preemie... I just feel very overwhelmed by this mile stone.

We got here, it's real, and now all I can think is "crap, now what comes next." LOL

so now i'm trying to process, and plan for the next part of this. I know I'm being pushy. I know i'm being annoying - but if I didn't stay on top of this, they'd ignore me and do whatever. I've been told repeatedly, my willingness to be involved and push and ask WHY for every decision and come up with solutions or even say "hey, can we try X" to push him when they may not have thought he was ready when I thought he MIGHT be ready... has given them (hopefully?) some trust in me.

She said yesterday that my determination to come up with a solution for every problem, and to keep track of everything would probably let them send him home sooner since they know i'll monitor weight at home, and have back up plans for feeds so he doesn't get too tired. Dedication, stubbornness and determination paid off...

but now i'm hitting the next stage. not 100% sure WHEN he's going to start being ready to go home, but close enough I need to start getting our ducks in a row, the nurse mentioned baby CPR and car seat safety to me... so it's in the near future.

I just wish I knew if we were thinking 2-4 weeks, or 5-10 weeks. I wish I had a better time frame for figuring out where we were in the whole process... and they won't ever give you even a guess on how things are going.

That's the part that's over whelming for me, i'm trying to stay adaptable, but don't even have a baseline to adapt from... which is really hard as an autistic person.


by on Jul. 20, 2014 at 11:33 AM
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Replies (1-10):
hopeful_leslie
by New Member on Jul. 20, 2014 at 11:40 AM
1 mom liked this
Very inspirational sweetheart! Your just proof anything can be overcome if you put your heart and soul into it.. Beautiful baby boy honey.
kajira
by Emma on Jul. 20, 2014 at 11:44 AM
2 moms liked this

I've dealt with more people in the last few weeks then most people put together in my entire life, in sheer amount of talking, phone use, and socializing for a good cause.

It's definitely pushed a lot of boundaries I didn't think I'd ever want pushed as an autistic person... and taught me I could handle it... at least short term.

Quoting hopeful_leslie: Very inspirational sweetheart! Your just proof anything can be overcome if you put your heart and soul into it.. Beautiful baby boy honey.


MamaLauri
by Bronze Member on Jul. 20, 2014 at 11:45 AM
1 mom liked this

Bringing him home will be the sweetest homecoming. Yes, your love and determinism paid off big time!

Jenn8604
by on Jul. 20, 2014 at 11:45 AM
1 mom liked this
Beautiful pictures Emma! Way to go!
Posted on CafeMom Mobile
Jenn8604
by on Jul. 20, 2014 at 11:47 AM
1 mom liked this
I'm so glad you were able to handle it. Every single push through you do with socializing gives me hope for my son. That one day he too may be able to push through his boundaries and be able to handle it.

Quoting kajira:

I've dealt with more people in the last few weeks then most people put together in my entire life, in sheer amount of talking, phone use, and socializing for a good cause.

It's definitely pushed a lot of boundaries I didn't think I'd ever want pushed as an autistic person... and taught me I could handle it... at least short term.

Quoting hopeful_leslie: Very inspirational sweetheart! Your just proof anything can be overcome if you put your heart and soul into it.. Beautiful baby boy honey.

Posted on CafeMom Mobile
kajira
by Emma on Jul. 20, 2014 at 11:56 AM
1 mom liked this

I don't think anyone thought I'd have been able to handle this if you'd have asked them what i'd be capable of in my late 20's when I was a kid or a teenager.  I really think the specialists don't follow autistic people through adulthood to get better #'s and figure out exactly when some things get easier, since traditionally, we learn social things a bit slower and what comes naturally to others has to be learned by us, we get there enough to survive over time, but it may take longer to be able to use what survivial and adapting skills we end up learning through out our life time.


Quoting Jenn8604: I'm so glad you were able to handle it. Every single push through you do with socializing gives me hope for my son. That one day he too may be able to push through his boundaries and be able to handle it.
Quoting kajira:

I've dealt with more people in the last few weeks then most people put together in my entire life, in sheer amount of talking, phone use, and socializing for a good cause.

It's definitely pushed a lot of boundaries I didn't think I'd ever want pushed as an autistic person... and taught me I could handle it... at least short term.

Quoting hopeful_leslie: Very inspirational sweetheart! Your just proof anything can be overcome if you put your heart and soul into it.. Beautiful baby boy honey.


Jenn8604
by on Jul. 20, 2014 at 12:04 PM
1 mom liked this
I wish they would. There could be more stories to encourage moms, dads, therapists, everyone, that maybe one day, little Johnny or little Susie just might be able to make a ton of phone calls and visit quite a few people. It may not be til late 20's or maybe 40's or 60's, but it could happen.

Quoting kajira:

I don't think anyone thought I'd have been able to handle this if you'd have asked them what i'd be capable of in my late 20's when I was a kid or a teenager.  I really think the specialists don't follow autistic people through adulthood to get better #'s and figure out exactly when some things get easier, since traditionally, we learn social things a bit slower and what comes naturally to others has to be learned by us, we get there enough to survive over time, but it may take longer to be able to use what survivial and adapting skills we end up learning through out our life time.

Quoting Jenn8604: I'm so glad you were able to handle it. Every single push through you do with socializing gives me hope for my son. That one day he too may be able to push through his boundaries and be able to handle it.

Quoting kajira:

I've dealt with more people in the last few weeks then most people put together in my entire life, in sheer amount of talking, phone use, and socializing for a good cause.

It's definitely pushed a lot of boundaries I didn't think I'd ever want pushed as an autistic person... and taught me I could handle it... at least short term.

Quoting hopeful_leslie: Very inspirational sweetheart! Your just proof anything can be overcome if you put your heart and soul into it.. Beautiful baby boy honey.

Posted on CafeMom Mobile
kajira
by Emma on Jul. 20, 2014 at 12:07 PM
1 mom liked this

They really should.

look at how many of us on this group are autistic and lead functioning lives, sure we struggle and have limitations, and have to adapt and work around them... but if the adult autistic people on this group aren't proof enough, I don't know what is.

Quoting Jenn8604: I wish they would. There could be more stories to encourage moms, dads, therapists, everyone, that maybe one day, little Johnny or little Susie just might be able to make a ton of phone calls and visit quite a few people. It may not be til late 20's or maybe 40's or 60's, but it could happen.
Quoting kajira:

I don't think anyone thought I'd have been able to handle this if you'd have asked them what i'd be capable of in my late 20's when I was a kid or a teenager.  I really think the specialists don't follow autistic people through adulthood to get better #'s and figure out exactly when some things get easier, since traditionally, we learn social things a bit slower and what comes naturally to others has to be learned by us, we get there enough to survive over time, but it may take longer to be able to use what survivial and adapting skills we end up learning through out our life time.

Quoting Jenn8604: I'm so glad you were able to handle it. Every single push through you do with socializing gives me hope for my son. That one day he too may be able to push through his boundaries and be able to handle it.
Quoting kajira:

I've dealt with more people in the last few weeks then most people put together in my entire life, in sheer amount of talking, phone use, and socializing for a good cause.

It's definitely pushed a lot of boundaries I didn't think I'd ever want pushed as an autistic person... and taught me I could handle it... at least short term.

Quoting hopeful_leslie: Very inspirational sweetheart! Your just proof anything can be overcome if you put your heart and soul into it.. Beautiful baby boy honey.


jowen905
by Jan on Jul. 20, 2014 at 1:26 PM
1 mom liked this

 You're amazing and so is your little guy.  I admire your tenaciousness, your dedication and determination.  With everything you have been through and everything you have accomplished in the past few months, I have no doubt that you are more capable than most people to work through the next steps and have a plan for each step.  You are one helluva momma, Emma!

darbyakeep45
by Darby on Jul. 20, 2014 at 4:00 PM
2 moms liked this

You are simply amazing Emma.  I'm so proud of you and how well you've handled everything over the past several months with your babies.  You are strong, determined, and I have a lot of respect for you.  Hugs!

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