Saturday, November 16, 2013

So...what do I do with a happy baby?

I’ve been promising this blog post for a while, and I am so happy to be writing it now.  I’ve told you how the twins started out on the same road as Mr. Boo with terrible reflux.  I promised to not lose my mind this time.  And other than being pretty tired, I can say that God has kept me in a much better mental/spiritual state than where I was with Boo at this stage.  I am grateful for that.
My twinkies

And there is more! Oh man I am almost giddy writing this.  Let me slow down.

The twins were doing bad.  Bad bad bad. As I told most of my friends, each day was worse than the day before.  So one night, I was changing Honey Bunny’s (our name for our baby girl) diaper, and there was blood in it.  I kinda ignored it.  I knew from my past experience that blood usually means some kind of intolerance, but I also knew she’d been sorta constipated, so I thought it was just from that.  But two days later, she started projectile-vomiting. I’d never seen puke like that.  I’d be feeding her in my arms, and after a few ounces, she’d erupt like a fountain.  If I was holding her up, it would shoot out several feet.  I immediately thought “pyloric stenosis”- google it if you don’t know- so we went to the doctor.  They scheduled an upper GI for the following day, and put her on just Pedialtye for the day.  

After she projectile vomited every feeding of that, and started showing signs of dehydration, she was admitted to the hospital.  She got some fluids, an immediate Upper GI, and blood work.  The Upper GI showed she did not have pyloric stenosis, but the radiologist commented on how bad her reflux was- he even showed me on the screen. We were only in the hospital for part of the day/evening and she started keeping food down, so we were discharged.  ON THE WAY OUT THE DOOR, she pooped, and there was a ton of blood in it. The nurse took a picture on her phone and texted it to our doctor (oh how I love technology!).  She said since she just had the tests and they were normal, we could go home, but if she had any more blood I needed to call her.  

We went home. Guess what happened. Two more bloody stools within a few hours.  I called. The doctor sent us to Children’s Mercy in KC immediately to check for intussusception (again, google, my friends).  After a sonogram, more blood work, and stool samples, the consulting GI specialist determined she had severe Milk/Protein Intolerance (MSPI).  We were given a can of fully hydrolyzed formula- ours is called PurAmino- and given a follow-up appointment.

Miserable babies with Big Brother Boo
Exhausting few days.  So we got home, and guess what.  Yes, Sammy Brown (our boy twin’s nickname) followed exactly the same way.  Projectile vomit and bloody stool.  These two. I tell you.

We hesitated for a few days about the formula. After all, they were already on a partially-hydrolyzed formula, so I thought that was enough.  We endured some really hard days waiting for our specialist appointment in KC.  

When we got to that day, we had a ton of questions, and the doctor very factually explained all the ins and outs of MSPI and why he thought that was the source of all their problems.  Basically, their little GI tracts could not deal with the larger proteins in regular or partially-hydrolyzed formula, so their entire systems were irritated, probably with large sores that bled as food passed through, and it was giving them not only terrible reflux, but abdominal pain and irritation.  He claimed the formula was the only answer. In fact, he said even their reflux would resolve if we’d use it. 
Boo showing the babies the ropes at the GI clinic 

Yah right, I said.  We wavered for another few days and then finally said we had to try it. We started using the new formula and nothing else.  The doctor had said that we’d see improvement in one week, with totally new babies in two weeks. 

Yah, right. YAH RIGHT! Anyway, we went for it.  And I kid you not, days 4,5 and 6 were the worst days we’ve ever had.  On day 6 I really almost lost it. They screamed, cried, fussed, arched, told me they hated life ALL THE LIVELONG DAY.  I really almost had to eat my previous post.  I had some words with God that day.  He spoke to me with love, I tell you, but I really still thought my life was almost over.

Day 7: I woke up, picked up Sammy Brown, and he curled up against my body and cooed.  WHAT? He had never done this- he was usually hard to hold because he was arching and fussing and uncomfortable.  I fed him.  He smiled. He fell blissfully back to sleep. I laid him down and he SLEPT.  WHAT??? Honey Bunny woke up. SAME STORY.  WHAT WHAT WHAT.
Happily chatting in their Rock N' Plays

They really got better.  The doctor was actually right.  They started doing amazing things they’d never done before, like playing on their backs on the floor happily.  They laughed. They made happy noises.  They ate contentedly.  They napped. 

So here we are, about 2 weeks out from starting the PurAmino, and I tell you what- I am still in shock.  They have their moments, even a few rough days, but it is NOTHING like before.  They are still refluxing, but it doesn’t burn so much. I have happy babies. So now my biggest problem is this: What do I do with a happy baby? For the first few days, I sorta freaked out.  I could set one of them in a bouncy seat and go to the bathroom.  Or take a drink of water. Or breathe.  I think I seriously danced around my kitchen a few times.
So this MSPI thing? It’s real and it’s serious.  This won’t be popular for me to say, but we were told that probably why Boo never got better is because I nursed him. I had eliminated all dairy and soy from my diet, but not we’ve been told there is really no way to get it all out.  If my kids are that sensitive, they would react to even the smallest amounts of dairy and soy that came from me.  And for that, my Baby Boo suffered.  That stinks to know that.  I know the breastfeeding people would say he got so many benefits from my milk that it’s worth it.  Maybe so.  But I can’t explain what it means to me now to have a happy baby.  I wish we could’ve enjoyed Boo like that.  But here we are.  We know now.
All Four Monkeys

The other big looming issue is that this formula is crazy expensive.  We estimate it could cost us $800 a month to feed these two.  We are working on a lot of ways to get help with this, so will you please pray for us?  We are working with insurance to try and get it covered (right now it isn’t), and applying for some grants that help people with non-covered medical expenses.  Please pray that in one way or another, we get that help. 

Honestly, though. I am not sure there is any price too high for us to have these happy kids. And considering what we will possibly save, compared to what we spent on hospital stays, tests, medicines, etc, for Boo, we will come out ahead. 

Guys, I am so grateful. I can’t find words. Thanks for your concerns and prayers for us.  I am just going to take some time and enjoy this, and try to thank God as much as I cried out to Him.  In this case, this time, I feel rescued.  It feels good. 
Sammy Brown thinks so too!!!