Eating Milestones

Tuesday, October 9, 2012

I stay plagued with questions regarding Alli’s feeding. 

“Why doesn’t Alli eat?  “Why does she have a feeding tube?”  “Will she not just take a bottle?”  “Oh, she still has a feeding tube?”  “Why??”  “Will she always have it?” 
Since there is no easy answer and it certainly ISN’T a quick or easy fix, I’ll attempt to explain what led us down this road.    (Side note: Next to the NICU experience, feeding issues are hands down the HARDEST thing I’ve EVER dealt with…but I know I’m not alone.  Just ask any extremely premature baby’s parent). 

If you’ve followed us any, most of this is a review, but in an attempt to get everyone on the same page here goes.
Alli was born at 27 weeks weighing just over 14 ounces.  For starters, she was severely growth restricted and had no amniotic fluid for almost 2 months.  She should have weighed at least 2 pounds, but due to whatever went on with my body (we still don’t know) she was starved the necessary nutrients to grow and missed out on the critical practice of swallowing amniotic fluid.  This practice paves way for full term baby to be able to successfully breastfeed or take a bottle.  She was then born 3 ½ months too soon, missing the obvious physical growth and development time in the womb, but then again, the very crucial practice of learning to suck and swallow….. The very things full term babies generally come out knowing how to do.  After she was born, she was on life support for 9 weeks.  During that time, she was fed TPN (Total Parenteral Nutrition) via an IV and once breast milk was started she was fed that through and OG, OJ, back to OG, and then NG tube.  These are all temporary feeding tubes inserted in either the nose or mouth and placed in the stomach or Jejunum-the middle section of the small intestine (think I should go to med school yet??).    

After the 9 weeks on the ventilator, Alli went back and forth between the CPAP and Nasal SIMV.  Because of the force of air through these, she still was yet to take her first bottle for another 3 weeks.  If you’re keeping track, that’s 13 weeks of not being exposed to the sucking and swallowing reflux.  Add to it, being brought into this world 13 weeks too soon.  
So I know what you’re thinking…..you know of another preemie who took a bottle like a pro and never looked back.  Why was Alli so different?

Here’s where you finally get that answer.  J
Once Alli was on high flow cannula we were able to begin feedings.  We had several swallow studies done and that showed aspiration.  So, we thickened her formula and placed her on her left side while feeding. 

Problem solved, right? 
Wrong! 

Her suck reflux has always been weak, but with coaching, she was able to take full feedings for a brief time.  After a few months, Alli finally took all of her feedings for 4 glorious days.  We thought we were in the home stretch (May 2011).  John dashed us away to Hilton Head for a long weekend with our big girls.  We expected Alli to be home in the coming weeks, but it was that weekend she began making her initial decline. 
Eating was proving difficult for Alli.  Yes, it was difficult for her to suck, swallow, and breathe…something that comes natural for most term babies, but she was able to do it some.  She simply lacked the endurance to finish.  For Alli, eating was much like us running a marathon with little or no training.  We were finally realizing that she had two significant whammies against her.  One we knew….the other we had yet to discover. 

Because of Alli’s poor lung quality and pulmonary hypertension her endurance was next to nothing.  She was exhausted.  It was simply too much work for her precious body.  We finally agreed to the g-tube surgery and in preparation for that surgery a PH-probe was placed through Alli’s nose into her stomach.  It measured the amount she refluxed in a 24 hour period.  No one was prepared to hear just how severe her reflux had been.   When the results were read, it showed Alli refluxed 248 times in a 24 hour period.  75% of the time in that 24 hour period.  Her reflux had been silent all along and while we knew she had little endurance we now discovered she had been dealing with extreme pain (although she didn’t tell us-she’s a tough cookie).  She had been slowly and silently refluxing into her lungs…..Another clear example why her lungs weren’t getting better. 
Eventually, she lost all ability to eat by mouth.  By July when her g-tube surgery was scheduled she had already begun refusing the bottle (which we now understand was because of her extreme pain and due to having virtually no endurance or energy reserve to eat).  Once home, we focused on g-tube feedings.  Our main effort when we brought Alli home was to keep her alive and healthy.  And keeping Alli healthy meant not focusing on oral feedings.  For us, it was a no brainer. 
In the spring, we were given the go ahead to be more aggressive with feedings.  Alli had made it through her first cold and flu season without skipping a beat.  But during that time, she lost what little skills she had left.  We were now up against a brick wall.  I just didn’t realize how tough that wall was going to be to tear down.  We began by attempting more and more baby food.  With every attempt we’ve met one hurdle of another.  We’ve dealt with poor motor skills, severe tongue thrust, poor oral motor control, control, and processing.  We’re now fighting oral aversions and oral defensiveness.  And we’re dealing with the fact that Alli is almost 2.  The only thing she seems to be age appropriate with would be her attitude.  Or maybe that’s just DNA. 

To be honest, there have been days when I don’t even want to attempt to feed her because I know what I’m up against for the day.  We’re met with gagging and retching at the sight of the spoon.  We’re met with baby anger and frustration because Alli honestly doesn’t know why we’re coming at her with a spoon.  To her, it seems mean.  She doesn’t know hunger.  She doesn’t realize that by opening her mouth and swallowing a few bites, that hunger is fueled.  She doesn’t know.  And then if she did, she doesn’t know how.  It’s a huge process really.  The slowest process of this entire journey. 
She’s had just about every.single.therapist. throw up their hands in near defeat.  No one knows how to fix her.  It’s been a huge collaborative effort really and we are SO thankful for all the people who have gone to bat for Alli.  Really gone to bat. 

They’ve tried.  Oh have they tried. 
And we have tried.

We’ve cried.
We’ve prayed.

We’ve even waved our white flag in defeat a few times only to come back running harder.
It’s not because we haven’t tried, cried, prayed, begged, or pleaded. 

And it’s most certainly not because she’s a picky eater. 
But something may have clicked. 

It’s still a little early to tell, but since Saturday night, Alli has been anticipating the food by leaning in and opening her mouth for bites.  NEVER has she done that. 

NEVER.


 

And just that simple lean in towards the spoon restores so much hope. 

8 comments

  1. We went through much of the same feeding issues with my youngest son, a 29 weeker. He had reflux as horribly as Alli and had 2 surgeries, including his feeding tube. He came off of it a little earlier but I remember the frustration, the tears, the praying, the hopelessness. We are thinking of you all and encouraged to see this glimmer of hope!

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    1. Thanks so much! Feeding issues are a heavy, heavy burden! It's nice to be surrounded by those that understand!

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  2. I too have a 27 weeker, who just turned a year old. We haven't had the eating issues that you guys have, but as you know in "preemie land" us parents like to read everything we come across and in doing so, I found your blog. I have to say Alli is a true miracle, and I'm so happy for you guys that she is doing so well! Also in reading my many preemie blogs...I've been following a little guy named Jack. His mom's blog is called Life with Jack (LifewithJack.com). He's a 23 week micro preemie, who has defied so many odds...including problems with eating. I just thought it might be helpful for you to read about the therapy and tools they used. He's not eating perfectly...but has come really far! Not that you guys aren't doing everything humanly possible already, but every little tip might help, right? Again, God Bless you and your family. I pray that Alli will continue to improve so that she can enjoy food!

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    1. Thank you for your kind words! Congratulations on your miracle!! I'd love to know your story! Thanks for the heads up on Jack! I actually have followed him since way back when I was on bed rest. His mother is an amazing lady and I have drawn so much hope and strength from their journey!

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  3. Just happened upon your blog from Life with Jack. Feels like I wrote it! So jealous of you preemie moms that are motivated to blog, and it is my therapy, so thank you :) Our story is simular, 28 week preemie, born 2 lbs but dropped to 1.8...lung issues, dont get me started on the high flow cannula..yada, yada, yada..fast forward 2 yrs later and we have a child that is only 10% g tube fed. We started a hunger based wean in June when she was 100% dependent on gtube. It has been the HARDEST thing I've ever done, NICU was hard but 'different hard'. We are now trying to take that last gtube feeding away but I'm scared! Isabela is tiny, only 21 lbs but her doctor says she eats fine and is happy & healthy. No reason to keep the tube. This is amazing that we are even saying the words " taking it out"..5 months ago that didn't even seem on the radar. FEDDING ISSUES ARE THE WORST but it looks like you guys are making great progress. Bela only started making strides when we made her hungry, it was hard but we did it. It sucked, but we did it :) now if mommy could get through HER dependency on the tube then we can move on with our lives..but never forgotten :) sorry for the length but I live and breathe feeding issues (for now :) Good luck! jessica kunkle

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    1. Hi Jessica! So glad you found us! I'm so jealous of preemie moms who blogged during the NICU.....I coulnd't even form a complete sentence back then, much less a blogpost! :)

      I am SO happy for your daughter's impending tube removal!!! What a HUGE milestone!! Feeding issues are the WORST and I swear I've said the very same thing to many fellow preemie Moms who are still facing in the NICU.....the NICU was hard, but different....a scary and frightening hard. Feeding issues are just flat out miserable!

      Look forward to hearing more about how you got to being tubeless! :)

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  4. I too found your blog through Life With Jack. We have a blog (the address is bryanandrobynadams.blogspot.com) I started while on bed rest..and did my best to keep it up during our 5 month nicu stay! Many times I just cut and pasted what my husband said on FB! I really really enjoyed reading this- because we are right there with you. Our 23 weeker, Asher (now 8 mo old- 4 mo corrected) came home eating some, and being fed the rest with NG. After being home a month, he completely stopped eating, was throwing up more, including throwing up the NG. He was DONE with the NG and so were we. So, he had his g-tube surgery in August. It has been much easier to deal with, but I am seeing how SLOW this process will be. He too, has to learn to feel hungry and learn what to do about it. And it's hard explaining that to people and just this weekend I was asked some of those same questions...how long will he have it, etc. Asher has all the skills- he's just not interested and not hungry. He has done well in therapy, but really stopped progressing with the bottle, and so we just moved to trying cereal (and still trying the bottle as well at another feeding) -- which he has tolerated fine- but it hasn't been a week yet of doing that once a day and he's already started to turn his head away. So sad and frustrating! And it made sense to me when you said she doesn't know why you are bringing a spoon to her mouth. That's so true. I find myself wanting to fast forward and have all this be "fixed" and over with. But, I know God is refining me through this process as He has with everything we have been through this year. However, dealing with feeding issues can be a very lonely place- I have struggled with that some with not having many people to relate to. Thankfully I have found a couple moms that are still using the g-tube or have in the past and that helps. And reading this helps! Thank you!

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    1. So glad you found us and I'm looking forward to adding and following you! I too would like a Fast Forward button, but I know God has his reason for this season. My job is to stay faithful and fight the good fight. And sister, we're fighting it for sure! I love connecting with others walking a similar journey!

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