Saturday, November 23, 2013

How Biscuit changed the hospital's policy

I am thankful today for the almost 16 months I was able to nurse Biscuit.  It was a rocky start with her posterior tongue-tie and her lip tie. 

On behalf of her nursing strike, and the possibility that she will never nurse again, and since I find myself sitting here at the computer pumping to keep my supply up, I am going to share her story with you.

I could tell from the start, when Biscuit was still in the NICU, that she was tongue-tied.  The twins were tongue-tied and so was Peach.   I knew the steps we needed to take to get her clipped. 

We couldn't get a referral to the ENT for her mouth to be evaluated until the cardiologist deemed her healthy enough to be clipped.  (She has a VSD- Ventricular Septal Defect- a tiny hole in her heart.) 

The cardiologist didn't want to see her until two months old because he said her VSD would probably close up by then (it still hasn't as of this publication-- but she's okay).  We pushed for him to see her sooner so we could have the procedure done so she could be about the business of eating and gaining weight.  The pediatric cardiologist is very busy and it's near impossible to see him in less than two months anyway.

When we did get a referral to the ENT we were declined by our insurance for the tongue-tie to be clipped because our insurance doesn't understand the importance of a freely moving tongue when it comes to babies being able to eat.  They reason that breastfeeding is not necessary and they can bottle feed.  But because of Biscuit's tongue-tie and lip tie, she could hardly bottle feed.

In the meantime I refused to let her fall into the "Failure to thrive" category like Peach did.  I could pretty much guarantee she would take in an ounce in one hour with a bottle.  But nothing more.  That was with a lot of persuasion.  She would become too fatigued to take anymore and stop moving her mouth.

So I fought the insurance company at the same time as researching how we could get it taken care of without costing us a couple thousand dollars.

The lactation consultant was working with me on ideas to get the milk into her and how else we could convince the insurance company to approve this very important procedure.

The ENT's office helped me fight for her approval as well.  They came up with an alternate plan of clipping in case it never got approved.

Biscuit did end up getting clipped under anesthesia at almost 8 weeks old.  When they brought me in to see her, she was conscious and eager to see me.  But her oxygen levels dipped and her lips turned blue. 

They rushed her over to the ICU to observe her for 24 hours.  Her stats remained level and showed no more problems after the first half-hour.  But they ran every test possible on her to determine why she couldn't stabilize in that first half-hour after surgery.

They found out she was still anemic.  (She was born anemic due to my hemorrhaging before her birth-- and had a blood transfusion at 24-hours old.)  But for some reason the pediatrician didn't know this, or if she did, she didn't pass that on to the hospital in the pre-surgery paperwork.

Unfortunately, because of Biscuit's rare and unsavory post-surgery experience, the hospital has now changed their policy on clipping tongue-ties under anesthesia.  They won't clip them under anesthesia younger than 60 weeks from conception.  So a full-term 40 week baby would need to be 20 weeks old to have the procedure done. 

Unfortunately, if a baby hasn't learned to nurse by around 3-4 months old, they probably won't learn.  I don't know many moms who are willing to pump and provide breastmilk for the first whole year.

I am sad that I won't be living here to help bring about a change in this policy.  I am sad to learn that her story is being misconstrued to scare other mothers out of having their babies clipped.   But I will be fighting it from our new location.  I will be telling the part of the story about how grateful I am that it was done and would do it again without hesitation.  If it weren't for her being able to nurse, we never would've made it to a year let alone almost 16 months.  I will be sharing my story with other struggling mothers who are wondering why their baby won't stay latched or their milk supply is diminishing.  I will do what I can to help bring about the change that needs to happen within the insurance company as well.

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