My prayer focus was to ask God for the ability to connect with Charlotte on an intimate level. You see, we were told based on the results of her CAT scan that she probably won’t be able to show emotion. I refuse to believe that. After all, she is part Italian! But seriously, it was my fervent prayer that this not be so. Also, I wanted to be able to follow and read her wants and needs so she would feel listened to and understood. Very important as well, my visit was intended give my sister a worry free, much needed rest. These were my prayers and intentions.
Unfortunately, the situation was not exactly what I expected. I arrived at the hospital at 1:30 am after a long flight delay. Charlotte was a cranky, fussy, crying mess, teething horribly and clearly overstimulated -pretty much inconsolable. . Then I see a bag of water hanging attached to her NG tube (stomach tube) and many empty Emfamil sterile water bottles as well as Nestle Pure Life water bottles- UGH! What’s going on?! Where’s the breastmilk?! When I learned that her banked breastmilk was completely stopped 36 hours earlier, I immediately went into save and protect mode. Which means “Jerzee” was in the house and ready for action!
I was told that the nutritionist weaned Charlotte off the
breastmilk as a “challenge” to see if she would eat more solids. Apparently, it
was her belief that the breastmilk might be filling her up too much. Better that she eats more calories in food so
her tube can come out, even though Charlotte has yet to master drinking
fluids. So the nutritionists and PEDS
doctor agreed to give Charlotte only water down her NG tube -water continuously
all night (1/2 liter) and 3 ounce boluses of just water 4x/day. Cram in as many high-calorie pureed
“fake-foods” and sugar nectars throughout the day instead. This is what they called a good nutrition
plan. And they drove my sister crazy measuring, force-feeding and counting the
calories – where these calories came from did not matter, just calories.
Sadly, this plan did nothing but set everyone up for failure
especially our little Charlotte. This “challenge”
was compromising her health, basically pulling the rug right out from under her,
nutritionally and medically. My sister
was simply scared by the looming threat of Charlotte needing a stomach tube surgically
implanted. So she tried to follow the plan feeding Charlotte as much food as humanly
possible. But as you can imagine, the
stress and anxiety to perform on her part as well as Charlotte’s was
overwhelming. They were crashing and burning.
Needless to say, GrAuntie Maria was fit to be tied and
brought on the “Post-Storm Jerzee Fresh” once again. After getting a brief orientation to
Charlotte’s schedule and care, I sent my sister home. Then I began the hard task of correcting this
nutritional travesty. `As with the first
hospital she was in, I had nothing but praise for the medical care. Same here and in addition, I was quite
impressed with her various therapists. But again, the nutritional aspect of her care
was severely lacking. And again, there
was little to no knowledge about breastmilk and its appreciation, as an integral part of
Charlotte’s care. So the first thing to
go is the breastmilk?! Oh, I don’t think
so ;)
This was a very long night as well since I needed to wait
until the day shift to address the issue and fix it. I pulled together my citations and
strategized my approach as I felt a pressing urgency to get that breastmilk
back up. I held Charlotte a lot that
night, neither of us slept much. I was
sick with worry and prayed hard for God to help me once again advocate on her
behalf.
First thing in the morning, Danielle Rigg, cofounder of
BestforBabes.org, reached out to see how things were going as she was writing a
blog about Charlotte and her miracle milk.
It was truly a “God thing”. As I
was brought to tears, Danielle listened as I told her how disgusted I was, that
once again I had to rescue and justify our use of banked breastmilk for
Charlotte. Exhausted and depressed, I
dreaded confronting the nutritionist and doctor as I know the way these
conversations go but it must be done. My
commitment is to none other than Charlotte Rose and her well-being.
Danielle reassured me and supported me with the words I
needed. She helped me re-group and
focus. Our angle would be Charlotte’s urgent need for the potent Omega 3 fatty
acids in breastmilk to help heal and nourish her brain. She sent me the citations and told me her
husband who is a traumatic brain injury doctor gives huge doses of Omega 3’s to his patients with amazing results.
So I felt a renewed energy and confident in my approach to reclaim the
breastmilk for Charlotte- today!
Another “God thing”, the nurse who worked the weekend was
still breastfeeding her one year old and nursed her first child long term. Natalie was a friend, not a foe in my quest
that day, eager to learn and help. She
was instrumental in contacting the key people and obtaining the orders to start
the miracle milk once again. I will be
forever grateful to her as well.After Charlotte started back on the banked breastmilk she was much happier. Imagine just getting water and small amounts of food, broke my heart just thinking about it. Now she was restored again. I mashed up whole foods instead of feeding her the processed foods. We had fun at mealtime as I placed the food on her fingers and hand so she could feed herself.
I also addressed the issue of having a gastrostomy tube (GT) put in temporarily (3mo) and having the NG finally taken out. A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one way of make sure kids with trouble eating get the fluid and calories they need to grow. I reassured my sister that this is a good idea for Charlotte right now and that the tube is very small and easy to care for, nothing to be afraid of. Charlotte will be able to do much more activity wise since it is more comfortable and out of the way. The GT will enable her to go home and take her time when mastering her swallowing skills. Most importantly, the GT will allow her to continue to receive the correct amount of her miracle milk!
The last day and a half that I took care of Charlotte, she
didn’t require any pain medication for her teething or Benadryl for sleep. She barely cried, slept soundly, cooed and
chatted and was on the verge of several smiles. (I threw my best jokes at
her-Lol) She was like "butter" ;)
Obviously, the Lord placed me in the right place at the
right time, once again. I happened to be
there just in time, when she needed me the most – a little ‘rescue mission”. I pray the Lord will continue to use me as an advocate for her, as she is my angel on earth. As expected, God answered my prayers for the weekend. Charlotte and I did connect on an intimate level. I was able to successfully read her and follow her needs. Many of the staff commented on the special bond we have. I know it, she knows it but it was nice to have that feedback. Natalie, her nurse, cried the day I left saying, “You are amazing together.” The time we spent together was an amazing gift.
Our sweet baby, Charlotte Rose continues to challenge me as
a person. Prompting me to dig deep, venture
out of my comfort zone and fiercely persist when it’s easy to give up. After all, she didn’t give up. And as far as emotion is concerned, Charlotte
elicits pure emotion from everyone she meets. In my
heart of hearts, I know she will return the gesture soon…….because my faith
tells me so ;) Link to our position paper for use of breastmilk for Charlotte
http://wwmdwhatwouldmariado.blogspot.com/2013/02/our-stance-regarding-value-of.html
Link to citations for the above position paper
http://wwmdwhatwouldmariado.blogspot.com/2013/02/benefits-of-breastmilk-for-babychild.html
Best for Babes is Helping to Spread the Word ! Thanks Danielle
http://www.bestforbabes.org/miracle-milk-helps-heal-brain-injured-formula-fed-baby#comments