Sunday, February 10, 2013

Saving Our Miracle

This blog was supposed to be called “Sharing A Miracle- Part 2”,  a follow up essay about my recent weekend visit with Charlotte.  I had hoped to bask in the glow of her amazing recovery as well as the success of her miracle milk. The night before, I barely slept.  Reading prayers and asking for God’s blessing consumed most the night.  I eagerly anticipated holding her in my arms for the first time.  And the nurse- in- me could hardly wait to evaluate for myself how well she was doing.

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, 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!    
Since Charlotte was teething and had a day full of various therapies, I made sure not to overstimulate her.  I followed her when we were alone and engaged her gently and quietly with lots of physical contact through holding, rocking and massaging her.  When she was "into it", I would carry her down the hallway to visit everyone and take her for rides in her chair.  I also went to all her therapy sessions and cheered her on.  It was quite busy and I admit I was really tired, my back and neck ached and my arms were sore -  it was quite a workout.  But so worth it- we were together again, that’s all that mattered.

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

Link to citations for the above position paper

Best for Babes is Helping to Spread the Word !  Thanks Danielle