Monday, September 26, 2016

Super list of Foods for Low Weight Kids

Anyone who has followed my blog, Facebook and been involved in the last 4 years of our child raising will know the struggles we've encountered with pediatric feeding disorders.
This journey has by no means made me an expert, but I was challenged to share the knowledge I've gained so that hopefully the Mom, Dad, or caregiver reading this can avoid what we've gone through. 


I am a strong advocate for breastfeeding and waiting to introduce solids until at least 6 months...
With this being said I also believe your child, your choice, FED IS BEST!
In our circumstance without my two youngest being exclusively breastfed and my stance on introducing solids when we did, I strongly believe their lives would have been in greater danger much faster due to choking.
I am also strongly advising if you are currently pregnant, planning to be, or have children around you please take a CPR and First aid test and become certified, This could save a life.

A little background, we had one "typical Child" who progressed normally-advanced in most areas including eating. Nene she is our oldest and so when her next sibling came along it made the issues that much more apparent and startling.
When Sanna came along we had a very similar beginning, tongue tie (clipped no further issue), breastfed, gaining weight, aversion to bottles (Nene the same) but with more gagging. We get ready to introduce solids at 6 months and no matter the texture she gagged and struggled to accept solids, we had to give her thicker puree for close to 6 months, and the things like cheerios, apples, pretzels that most 12 month old can eat safely/take their own bites with supervision she couldn't even begin to until closer to 2. We also struggled with her taking a sippy, straw or cup of any kind. This caused her weight to almost plateau. We calorie packed the foods and textures she could eat. 
We did all this and much more when their brother Nico came along, and his aversions became life threatening and he ended up getting a feeding tube at 15 months old. 
Both the youngest kids have had oral surgery for a severe posterior tongue tie which helped but didn't 100% correct the problems.

When we calorie packed foods here is some staples:

Avocado (@ least 1/2 of one daily)
Oatmeal
Bananas
Greek yogurt (Fage is made with whole milk/cream)
4% cottage cheese
eggs
sweet potato
protein powder
coconut oil
Chocolate ice cream (Bryers chocolate is made with cream and is calorie and fat content=pediasure per 8oz serving)
pudding cups
puffs
baby food meats/fruit/veggies
creamy peanut butter (ask doctor before giving to child)
cream cheese
re fried beans
sour cream
Stage 3 baby meals
***everything needs to be full fat! No low fat/no fat anything***


DISCLAIMER: I am not a nutritionist and I strongly suggest if your baby is struggling to gain weight, eat, or drink PLEASE consult with a doctor!**


So now that I gave you our pantry basics for feeding and calorie packing I will list a sample menu.


Breakfast: 

**breastfed first as long as child wanted**
2 eggs over medium (the yolk helps the bites go down easier)
slice of toast with cream cheese/crust cut off
Or
1 cup Oatmeal w/ 1TBSP coconut oil or mashed avocado/baby fruit/veggie puree w/ 2 TBSP protein powder
Or
1 cup Greek Yogurt with puree fruit/veggie
slice toast with cream cheese/crust cut off

Snack:

**breastfed first as long as child wanted**
Full Fat Ice cream or
mashed avocado/banana combo
puffs

Lunch:

**breastfed first as long as child wanted**
Cottage cheese
stage 3 baby food meal

Snack:

**breastfed first as long as child wanted**
Full Fat ice cream or
mashed avocado/banana combo
puffs

Dinner:

**breastfed first as long as child wanted**
Modify what we were eating to a consistency child could handle
or
cottage cheese and Stage 3 baby meal
or
re fried beans with mashed sweet potato
or
1 cup oatmeal with 2 tbsp peanut butter and 2 tbsp Greek yogurt
and baby puffs to finish

**breast feed on demand the rest of the evening/overnight and throughout the day and offer spoonfuls of water at amount child can handle or with sponge/toothette/cup**

We had to really monitor how our children ate and drank, and the Heimlich maneuver happened at least once a meal on at least one kid daily for 2 1/2 years.
I worked two jobs during the last 2 years and still breastfed on demand and worked only hours the baby was sleeping so that I was available to nurse him (Nico).
During this whole process we were in constant communication with our children's health care provider/speech and eating therapy/ Physical therapy and when those weren't helping we networked to get them the help they needed as much as we could.
It's hard when you have to be so hyper vigilant and it was and is exhausting and a strain on relationships. Please find people to talk to and share your story. You never know who is in the same boat and may need the support you have or the tips and tricks that can make all the difference.
I hope this menu/food list can help anyone who just doesn't know were to start.







Tuesday, September 13, 2016

I Thought I Was Okay...I Was Wrong

trigger is something that sets off a memory tape or flashback transporting the person back to the event of her/his original trauma...

So that's what was happening!
My heart was racing, my palms were sweaty, I felt like I had done something wrong and like I needed to prove all the things that had gone right since that time. 
The things we know now and that my son is doing well.

You may be wondering what I am talking about.  It's almost been 1 year!
1 year since my little boy was hospitialized... 
What was supposed to be just a calorie study turned and morphed into almost 3 week  nightmare that I wouldn't wish on anyone.  
My little boy wasn't growing despite our best efforts and constant calorie packing of his meals and me nursing him 9+ times daily...
I thought with all we learned since then and the trust we have built with the pediatrician and GI that I had recovered, healed, was emotionally able to look back on it and just have it be a bad memory that I carry, and my beautiful son will hopefully never remember...
I was wrong!
I love nurses, and think they are absolutely amazing, but the nurses and staff we dealt with at our hospital visit combined with the social worker made for a battle.
Not just between me and them, but between them and my son's safety.
I hadn't seen any of them since our discharge, and within the last week it was like the world was wanting me to be tested, teased, and bombarded. 
 Maybe even toppled off my happy attitude from the book launch and all the sincere, supportive, kind words from other families about the book.
So in passing I see someone I recognize, can't quite place her...
BAM!
It's THAT nurse! The one who literally tried to drown my son!
I don't say this lightly folks, I am not exagerating.
My baby could NOT drink safely, I told them, showed them, and warned them 1000 times in the first 2 days...because his swallow study(which they had me administer) showed he was "normal" she came waltzing in armed with 5 different cups...and proceeded to inform me "you have 3 hours to get "X" amount of liquids in him or we put an IV in, he's only got in 200ml today and you've been coddling him." 
WHAT! is she crazy?
 I know in my heart the test is wrong that he can't do this.
So long dramatic story later I end up physically removing her hand and the cup from my son's mouth as she POURS a half full cup into his mouth with no end in site, not sips or even swallows, POURS IT IN!  
Yes, mama was not happy as her baby is gagging, coughing, choking and whooping trying to catch his breathe...
I was labeled a "combative mom" in paperwork for refusing to let her continue and when she ignored my saying "stop" and then making her stop. I didn't manhandle her I just moved her hand over away from my baby and the cup with it...eventually it was proved that this technique she employed was not okay and that I was right and no more cups were brought to our room per drinking/eating therapists orders...
I still couldn't look at that nurse nicely the rest of our stay...
But I didn't think it would effect me so much so long afterwards and thankfully she didn't notice me and I just kept walking.
And then...
I was at work this weekend and ANOTHER ONE came in to the salon!
The 2nd nurse who was constantly telling me her opinion... 
"well there is no way you are waking up every time he needs to eat...your husband can't possibly be doing what your son needs when your sleeping after working all night...you must not be feeding your baby enough and your breast milk production must be low."  
I thought I was having a panic attack.
She was looking at me and I asked her "Do you remember me?"
She said "yeah, you look really familiar"
I reminded her where we met and she asked after my son, I was sweating and shaky the whole time feeling like I needed to run home and bar the door for attack...totally unreasonable!
And then she said something as we talked that just about sent me over the edge...
"yeah, it's hard when we have to tell parents like you they aren't feeding their babies enough..."
EXCUSE ME! You have got to be kidding...
I had just got done telling her that he was taking 1/2(500cal) via tube of his 1000cal goal daily and 1/2 by mouth and he was maintaining his weight, but if you add even 250cal more via tube with his formula which is predigested then he gains lbs every month...
there is an absorption issue when his body has to break food down on its own...
it is NOT because we don't feed him enough!
I was instantly brought back to the hospital, nightmares, and feeling scared.
She left, but the nightmares of someone coming to take my kids are back...
For how long I don't know, I don't feel like we are safe again, I am scared to have people come to my home again...will this ever fully go away?
I hope so, I try to be a good mom and a nice person, but I am battered and bruised by the events of the last year...
Please God make it go away...
I understand better now why my 5 yr old gets so anxious when she watches me take her brother to therapy, or I head off to work. 
It was just as traumatic for all of us and we are all still healing from it.
 It's changed our world and colored our perception of medical professionals and people who come into our home...
"is it a necessity that they be here?" and "is it safe to have them here?"
2 questions I always ask myself now.