Monday, August 12, 2013

A Major Let-Down: Forced to Abruptly Wean

Most mothers have set a goal as to how long they intend to breastfeed.  Some will extend well beyond their goals and some may fall short. Health authorities have written guidelines suggesting length of time as well including the phrase “until mutually desired”.  The fact is our decision involves the luxury of choice.  But what happens when that choice is taken away?

This is the story of two mothers, in two different situations, facing two different realities.  Yet there is a common thread. Both were faced with life-threatening medical issues.  One, dealing with severe uterine hemorrhaging and the other was blind sighted by a malignant inoperable brain tumor.  To their shock and dismay, they had no choice but to abruptly wean their nurslings.     
I will introduce you to each mother separately and share excerpts from their emails posted to our community.   

First, there’s Dorana with daughter Joy who is 18 months old.  Not only did Dorana have breast reduction surgery at age 15, but her baby was tongue-tied as well which made for a challenging start.  Yet, Dorana breastfed Joy exclusively for 6 months and their nursing relationship continued to thrive well beyond.  It wasn’t until Dorana hemorrhaged several times over the last two weeks that everything changed.  After transfusions and uterine fibroid surgery, she was placed on hormonal therapy and is facing a likely hysterectomy. 
The following is part of her emotional post:

Dorana & Joy
“Joy came to visit tonight and for the first time since being admitted she started fidgeting with my gown and realized that she could pull on it and the snaps would pop open to expose my breasts...  I've developed a couple of blood clots in my leg and they've discontinued the Provera and are considering Lupron to freeze my system in hopes it will recover - but I can't breastfeed on the treatment.
It's so different being forced to wean.
It's been five days since I breastfed and I didn't know whether I would produce anything and whether it was a good idea to even allow it since as soon as I get this shot, it really would be over - would it be fair to allow it today?
But as she curled up next to me on the hospital bed and put her tiny hand in mine, she nuzzled against my breast and mumbled, "Mama, mama," softly while ever so gently patting her booby and began to nurse, I held her closely as I wrapped myself around her and quietly began sobbing as my husband hovered over us wiping away my tears...
I remembered the first time she struggled suckling in a room just like the one we're in today just down the hall after realizing she wasn't eating much with the bottle, not knowing if she was getting anything at all and whether I was producing anything since I had had a breast reduction at age 15.
I was brought back, those first few days I think I was terrified of touching her, maneuvering her like a fragile china doll instead of the assured lioness caring for her young.  
There were the all night feedings that ended in blood raw nipples and countless restaurants that gave wait staff and patrons a front row seat to view all the booby Joy could eat and how if things get bad, I can always run away with the circus as a contortionist having mastered the art of hovering over the back seat of the car whilst dangling my monster bobbies over her car seat mid epic meltdowns to quiet a hysterical baby...
They say you never know when it will be the last time - the last time you give a loved one a kiss goodbye, hear someone's voice, nurse your child...
I don't know if tonight in my hospital bed was the last time I'll be able to breastfeed my daughter.   There were more tears as I encouraged, "Okay, mama, say "Thank you booby!  Goodbye!" the way I had done a million times before...
I do know what a gift, a miracle really a true blessing it has been to have breastfed my daughter for 18 months.   I am proud of my body for the nourishment it provided my child. I will never forget her big eyes and endless lashes gazing into mine or the hours she slept atop my naked breast.”

Nancy & Hunter

Second, meet Nancy with baby, Hunter.  I had the pleasure of assisting Nancy early on as well.  Breastfeeding got off to a fabulous start.  Sadly, Nancy was diagnosed with a brain tumor.  I share with you her heartfelt account:
“I am a first time mom and my son is only 5 weeks old. When he was 3 weeks old I went to the ER with unbearable headaches. I didn't leave for 4 days. I left after surgery to put a shunt into my brain and also with a follow up with a neuro-oncologist to figure out the next steps to address the inoperable, malignant brain tumor they identified in the MRI.
I also found out last week that my treatment will now necessitate me being on chemotherapy, which is a change from their previous assessment that radiation alone would be sufficient. This change is important to my prognosis in a lot of ways, but the biggest impact to me mentally and emotionally thus far has been the fact that taking chemotherapy will preclude me from continuing to breastfeed my son.
I know many of my friends and family think I am silly for being so upset about losing my ability to breastfeed in the midst of all the other challenges my family and I are facing. But it truly breaks my heart. Breastfeeding helped me regain my bond with my newborn after being in the hospital and away from him for a third of his life, it made me smile every day, it helped me believe again for a little while in this body of mine which is failing both me and my son.
To Dorana: I just wanted to say that your e-mail hit very close to home for me, and while I hate to hear of someone else going through such difficult times, it helped me to hear that someone else understands how I am feeling, to be reminded of the gift I was given, and the beautiful memories I will have with him for those first few weeks of his life.”

We can take away many things from these two women, but what resonates most with me is their gratitude and willingness to embrace and share their vulnerability. For however long or short, breastfeeding meant much more than just a way to feed their child.  It was instrumental in fostering a relationship that knows no bounds, time or limits; one which transcends the physical.  Even though they were forced to stop nursing, these mothers will continue to nurture their souls with sweet imagery of breastfeeding…..lifting them up, lighting their way, eternally bonding them to their children.

In a world with so much uncertainly, there is one thing I am sure of.  The benefits of breastfeeding far surpass the milk itself.  The magic lays in the relationship that we so tenderly cultivate, leaving us feeling empowered and able to face and endure the hardest of times with honesty and authenticity, dignity and strength. 


What a gift we have created in this community of women!  I am awestruck by the power of maternal kinship, love and energy.  Each mother extends their hand and heart to hold and support each other, simply saying “You are part of our tribe and our tribe takes care of one another.”  

Friday, April 12, 2013

Miracle Milk Continues to Heal Charlotte's Brain! Needs a Boost for Upcoming Cranial Reconstruction

   
Dec 2012
                                                           




            Then & Now
         Amazing! 
Mar.2013


After suffering a severe traumatic brain injury in December and deemed fatal, Charlotte Rose continues to defy all odds!  Not only is she alive but she is thriving, much in part, to her daily infusions of mothers milk. 
http://www.bestforbabes.org/miracle-milk-helps-heal-brain-injured-formula-fed-baby  

Charlotte was the very first  formula-fed child to receive banked breastmilk at St. Mary's Hospital in Florida.   Since her "awakening' she has received pasteurized banked breastmilk which we purchase from the Mothers' Milk Bank of Austin. Charlotte is a living testament of the tremendous nutritional and healing powers of breastmilk. As you may already know, pasteurized banked breastmilk is commonly used in neonatal units all over the country but basically unheard of in a Pediatric ICU.  Until Charlotte- that is!

Since her homecoming on February 15th, Charlotte has made tremendous strides!  She is holding her head up now and almost sitting up on her own.  Her strength and will to play and perform, even the simplest tasks, is so inspiring.   Physical therapy, occupational therapy and speech therapy have been scheduled with great consideration taken, to ensure her much needed rest.   





In June, Charlotte will be undergoing a very delicate surgery-Cranial Reconstruction.  The neurosurgeon will close her skull with the pieces of bone he removed in December. When she was injured, the right side of her skull was opened as a life- saving measure to allow her brain adequate room for swelling.  Because of that, great care must be taken and she has to wear a heavy protective helmet.  Also, since Charlotte is only able to eat and drink small amounts. So the banked breastmilk remains the staple of her diet via her gastric tube. (a tube that was surgically inserted through her abdomen into her stomach) She gets a total of 21 oz per day. We are doubly blessed that as a bonus, breastmilk naturally contains the mega doses of Omega 3's  which are vitally important for her brain. 

The practitioners involved with Charlotte's care have confessed at being shocked by her mere survival let alone, her rapid pace of progress. They now admit and accept that this amazing feat is heavily due to the miracle of breastmilk.  Her doctors profess that this regime is critical to her recovery. Unfortunately, the insurance company refuses to pay for the milk.  So Charlotte thrives today because of the many generous contributions to her milk fund. Our hope is to continue to provide this miracle milk through her upcoming surgery & recovery.  

Unfortunately,we are almost out of "milk" money and she has about 10 weeks until her surgery. We have exhausted all of our own sources so we are reaching out to you.  I imagine you may be thinking "Why not use regular donor milk?" But the hospital and surgeons are adement that we used pasteurized banked milk until after her recovery from surgery.  
If you can help us meet our goal by contributing to Charlotte's Miracle Milk Fund- it would be greatly appreciated and surely blessed.

Only $5 buys her an ounce of the Best BOOST she can get to prepare for surgery! 


Donation site:   http://charlottesmiraclemilk.wordpress.com/    

Please continue to keep this precious child in your thoughts and prayers.  

Thank you so much!

GrAuntie Maria




Tuesday, April 2, 2013

Our Child of Light

 This Easter, I was absolutely and certifiably a blubbering mess!   Mind you, each holiday brings some tears because I miss my mom and my eldest daughter usually can't come home from CA for Easter.  But this year was different.  My mind was flooded with the thought that Baby Charlotte's miracle was like the miracle of Christ's resurrection.  
(background post   http://wwmdwhatwouldmariado.blogspot.com/2013/01/sharing-miracle_19.html)

Was it arrogant of me to go there?  I felt almost guilty (Catholic guilt w/ a little Italian guilt smeared on top-Lol) equating Charlotte's awakening to Jesus rising from the dead. But to me it was uncanny and made the story of Christ's suffering, death and ascension so tangible I could feet it down to my bones.  After all, Charlotte suffered, was brain dead and awoke in a miraculous style. My faith tells me, Charlotte is alive because I believe that Jesus is alive! One could not happen without the other.  

My feelings were so strong I could not contain nor hide them.  I cried all night and throughout the morning church service- couldn't help it! Overwhelmed with gratitude I raised my heart in silent prayer, "I called Your Name, You heard my cry, Thank you, Lord for saving Charlotte, Thank you, Lord for saving me."  I continued to cry on & off throughout the day to my poor relatives who came to celebrate Easter!  Over & over I recounted the agony of Charlottes near death and the inexplicable joy when she miraculously woke up.   I thought, "OMG- now I "get" the true meaning of Easter!"

Charlotte, Our Child of Light

As many of you know, I spent last weekend with Charlotte. I tell you there is nothing more life- affirming than being in the presence of this blessed child. I would like to share the most poignant moment.  It wasn't when she squealed at Elmo or fed herself for the first time or fell asleep in my arms. It was when I carried her outside into the yard. I fully expecting her to shield her face from the bright sun by burying her head in my shoulder.  But instead, Charlotte intuitively stretched upward and boldly lifted her face to the sun. She closed her eyes and just let the warm rays stream across her face.  She was very still and peaceful as the beams of light kissed her ivory skin.  

I was awestruck!   It was so surreal like she knew exactly what she was doing.  Charlotte stayed like that for a minute or so, clearly experiencing what I can only describe as a sacred, intimate connection.  I thought, "What a heavenly creature! She knows where she came from. This baby is truly filled with the Light of God!"



At Easter, my SIL, Lynnie confided in me that when she visited Charlotte, she whispered to her, "You saw Him, didn't you?" She said suddenly Charlotte lifted her head and eyes upward and paused there quietly.   


Many people ask me, "What's the extent of Charlotte's brain damage? Her deficits? The long-term predictions?

I do not care nor dare to know the answers to those questions.  Oh sure, I can spew the medical lingo as well as anyone.  I can profess to know about the complexities of the brain and what's to be expected. Normally, I am pretty smart and savvy -don't  pull any punches. I am a "shoot from the hip", reality-based type of person when it comes to medical issues.  But I confess to you now that I am none of those things when it comes to this baby. Charlotte Rose cleaned my clock, flipped my lid and rocked my world!  She simply tossed aside any logic or intelligence I thought I had and replaced in with sheer faith. 


So my friends, just like the other followers of Jesus, I stand before you a person transformed by God's grace and mercy - disarmed and vulnerable, a mere mortal in the midst of a divine plan. 




Attachments: 

- the book & website below is a vivid account of another child who had a near death experience.  Heaven Is for Real is the true story of a four-year old son of a small town Nebraska pastor who experienced heaven during emergency surgery. 
http://heavenisforreal.net/  


*This song came to mind as well- Laura Izibor "Shine" Let The Sun Shine On Your Face








Wednesday, March 13, 2013

The Gift of Nighttime Parenting


I frequently share this story, often teary eyed, when parents ask me if it's OK to sleep with their babies.  Not only is it OK, it's a natural assumption for human infants that they sleep with the mother especially breastfed humans.  I had the pleasure of my children sleeping in my bed as nursing infants and toddlers.  It wasn't until they were ready that I transfered them into their own bed in their own room.  So yes, I was an avid co-sleeper!  Bedtime was not stressful or scary - just my warm, loving  embrace that said,  "NO fear - you are worthy & deserving of  my presence, day & night."   As my children grew, the bed was a common meeting place for fun and conversation, whether it were morning or night.  My door was always open for any joys, fears or concerns.

When I was 47, I was faced with a serious health issue which required surgery. I had a huge mass in my pelvis which led my doctors to believe I possibly had ovarian cancer. The prior year, I underwent bi-lateral mastectomies for breast cancer. Once you have cancer that's pretty much where people go with it :(

Anyway, I decided to go to Johns Hopkins Cancer Center in Baltimore for a full evaluation since they were considered one of the best for this sort of thing.  I'll admit I was really scared, more scared than when I had breast cancer.  From the lay person side of my brain, I felt because it was inside my body and not hanging outside my body like my breast, it was more serious.   Totally irrational, I know.  From the nurse side of my brain, I knew ovarian cancer was one of the most fatal and that since there was a palpable mass, it was probably too late anyway.  That's why I went to John's Hopkins, I figured at least I deserved the best surgery I could get since one surgery is usually all you get.

Johns Hopkins is about 4 hours from my home.  I went down for my evaluation and its was recommended that I have a complete hysterectomy. "Looks suspicious but only until the surgery is  done will we (the doctors) know for sure if you have cancer and what type."   Ugh!  So I scheduled my surgery and informed my family.  Thinking it is unlikely that I could dodge a bullet twice, I expected and prepared for the worst.  Prompted to get my affairs in order, I  redid my will including an attachment letter with my funeral wishes and my "gifted"  belongings.   Listen, I know this sounds morbid but I felt compelled to do it all.   My children were grown by then- 25, 23, and 21 years old respectively. I had been divorced for 6 years by then as well.  So funny thing, when I asked my children what they wanted of mine (jokingly but secretly serious), they couldn't think of anything!  My next thought was, "why am I keeping all this crap?!"- Lol.    I didn't know what the outcome would be but it made me feel much better not leaving confusion and chaos for my children.  Of course, I didn't expect to die during the surgery or shortly thereafter.   But I did know that I would not choose conventional treatment such as chemotherapy and radiation so who knew how long I would live?

To bring her up to speed,  I called my eldest daughter, Nicole who was living and working in NYC.  The main purpose of this call was to let her know that her brother and sister were going to come down to Baltimore to stay overnight the day of my surgery.  Did she want to come down, too?   Well, I could tell by her voice she was anxious and scared (moms know these things) and she responded quickly that she was sure she could not get off work.  Obviously, a knee- jerk reaction due to fear and uncertainty.  I got that.  So, I told her not to worry, that I understood and I would see her when I got home.

M

I am happy to tell you that I did not have cancer just tons of endometriosis- who knew?   I was exhilarated by the great news and felt fantastic (as fantastic as someone who had 4.5 hrs of major surgery could feel).  My parents, two children and sister-in-law were present rejoicing with me. But then guess what happened? To my surprise, my daughter Nicole showed up at the door of my hospital room.  Without a word she proceeded to walk up to my bed and climb in right next to me, laying her head on my chest- right in front of everyone<3.

M
It was truly one of the most tender moments of my life!  I will never forget it.  No words needed.  Just a gesture of pure love and devotion.  Our relationship was right back where we first started, snuggled together in bed. But this time it was,  "NO fear momma, you are worthy and deserving of my presence."  Now, that's the power of nighttime parenting - building bonds that stand the test of time!

Me & my girls, Andrea & Nicole
One year after my surgery


Sunday, February 10, 2013

Benefits of Breastmilk for the Baby/Child with Traumatic Brain Injury

The Benefit of Omega 3's - Fats for brain development.

*Breastmilk also contains some very beneficial fats. Mainly, Omega 3 fats such as DHA and AA. These fats are there to help the baby's brain work, ensure that his immune system is functioning, and helps him take in fat-soluble vitamins. The fats that are found in formula are not digested completely by the infant, and formulas also don't contain DHA.  The fat level in mature breastmilk is approximately 4% and is independent of what mom eats.
http://transcripts.cnn.com/TRANSCRIPTS/1210/20/hcsg.01.html

*Brain injured patients need Omega 3s, not high doses of Omega 6s which is what the Hormel pudding is loaded with! The ratio of 6:3 is what's key and most American diets are overboard on 6's and have zero to limited 3s. http://www.sciencedaily.com/releases/2008/03/080307133659.htm

"Omega 3 fatty acids are important for the baby's developing eyes and brain," says Dr. Sheila Innis, the study's principal investigator, head of the nutrition and metabolism program at the Child & Family Research Institute at BC Children's Hospital, and professor, department of pediatrics, University of British Columbia.
http://www.fastlearner.org/WebsiteFiles/NIX6_Mar15.pdf 

*Composition of Breastmilk (to combat the argument that Charlotte needed hydration)
Water 88.1%, Fat 3.8% Protein 0.9%
Lactose 7.0% Other 0.2%
Source: Lawrence R. Breastfeeding: A guide for the medical profession. 4th ed. St.Louis: Mosby-YearBook, Inc.1994

*Breastfeeding is best for brain growth and neuromotor development of the babies. Nearly two-third of the brain weight is due to phospholipids and long chain fatty acids. Docosahexaenoic acid (DHA) and arachi-donic acid (AA) are key fatty acids for growth of the brain. Human milk contains 30 times more DHA than cow’s milk. According to WHO, infants should get 20 mg DHA/kg every day. Human milk is rich in choline, taurine and zinc which are required for brain growth. Human milk contains almost double the quantity of lactose compared with milk of other mammals. Lactose is credited to facilitate the synthesis of cerebrosides and myelination of central nervous system (CNS). Breast fed babies have at least 8 points higher intelligence quotient in later life as compared to formula fed babies (6, 7).
There is enough evidence to suggest that the food we eat influence our memory, concentration, comprehension, judgment, intellect, mood and emotions. There are at least 50 brain chemicals or neurotransmitters that are affected by the intake of food and micronutrients (8).

Physiological effects of nutrients on brain growth
A number of amino acids are recognized as precursors of neurotransmitters. Tryptophan is required for production of serotonin which improves the mood and sense of wellbeing. Choline is required for production of acetylcholine which is critical for our memory. Tyrosine helps in motor coordination by elaboration of dopamine. Taurine is required for maturation of retina.

Micronutrients are required for production of several enzymes and co-factors for a number of metabolic pathways. It is known since ages that pellagra (niacin deficiency) leads to reduced cognition and dementia. A number of other B-complex vitamins especially B1, B2, B6, B12, niacin and folic acid are needed for synthesis of several neuro-transmitters. Thiamin deficiency hampers the ability of the brain to utilize glucose. Deficiency of folate, B6, B12 and choline are associated with elevation of plasma homocysteine level which may lead to thromboembolic complications and stroke (9). Iodine is required for synthesis of tri-iodothyronine and thyroxine. Iron deficiency is associated with reduced physical activity, neuromotor incoordination and reduced cognition (10). Cytochrome oxidase in the mitochondria is an iron-dependent enzyme. Oligodendrocytes require iron to synthesize fatty acids and cholesterol for myelin production and its integrity. Iron is also required for functioning of neurotransmission system such as dopamine, serotonin and GABA. Iron deficiency has been shown to adversely affect brain stem auditory activity and visual evoked potentials which may persist even after correction of iron deficiency anemia. There is some evidence to suggest that excessive tissue concentration of iron may lead to Parkinson’s disease in adults. Zinc is an important component of over 200 metalloenzymes and there is high concentration of zinc in the brain (11). Copper is an important component of cytochrome oxidase and superoxide dismutase in the brain. Copper deficiency is associated with Menke’s disease while copper excess is a recognized marker of Wilson’s disease, familial amyotrophic lateral sclerosis and Alzheimer’s disease.

Sea food is eminently brain-friendly food. Fish and fish oils are important sources of omega-3 fatty acids and DHA. Omega-3 fatty acids are credited to reduce cellular and vascular inflammation in the brain, promote vasodilatation and ensure integrity of brain cell membranes to keep them soft and pliable(12,13). DHA constitutes almost one-half of the total fat in the brain cell membranes. DHA is the building material for fabrication of synaptic communication centers in the brain. It increases the level of "feel good" neurotransmitter serotonin and the "memory boosting" chemical acetylcholine.
Unlike adults, infants cannot convert a short chain fatty acid alpha- linoleic acid into DHA and they must be provided with this essential nutrient de novo in the diet. Table I lists the essential nutrients required for the development of CNS (1). Fish is a good source of omega-3 fatty acids, taurine, iodine and zinc. Incidentally, junk food is rich in omega-6 Trans fatty acids which compromise the integrity of the CNS by making cell membranes less pliable and more rigid.

Smart Nutrients for the Brain
• Omega-3 fatty acids, dcosahexaenoic acid (DHA) and arachidonic acid
• Vitamin B complex, folic acid, vitamin C, vitamin E
• Iodine, iron, zinc, selenium
• Essential amino acids including taurine
• Choline
• Antioxidants

Apart from direct adverse effects of nutritional deficiencies on the brain, there are indirect consequences of under nutrition on brain development. Children with under-nutrition are apathetic and listless with poor interest to explore their environment. Because they are small in size, they are treated as "too young" and given inappropriate stimulation by their parents. The altered behavior and mood of the undernourished children often leads to the altered attitude of the caretakers towards them with poor level of interaction and play activity.

 

 

Our Stance Regarding the Value of Breastmilk for Charlotte as Nutrition & Medicine


We are committed that Charlotte gets all of what breastmilk has to offer which includes a heavy infusion of Omega 3s for her brain.   Neurosurgeons are using Omega 3 supplementation as an essential component of their TBI patients with dramatic results. Good nutrition is the basis for Charlotte’s performance meaning when she consumes the ultimate nutrition; it has and will continue to positively impact her therapies.

It's not JUST that breastmilk is high in the "good stuff", it's that formula/sugar laden drinks and foods are high in the bad stuff such as corn syrup and vegetable oils. In other words, it's a win-win for Charlotte to receive BM as her primary fluid along with healthy complementary foods.

We have attempted to understand your explanation of the food "challenge". Reason being if Charlotte could take in the "calories" by solid foods and liquid then she would not need a PEG put in to go home. We understand that many children "drink their calories" and have no room left for food.  This would understandably be a concern if we were talking about anything other than breastmilk which is easily digested and 99% bio-available. It doesn't sit in the stomach for 4-6 hrs. like commercial formulas do. Also water is "filling" as well and can discourage eating plus it contains no nutritional or medicinal value. Shouldn't we be concerned where the calories are coming from- not just counting calories?   I implore you to produce the studies that show water and high calorie supplements are healthy.

It is clear to us that Charlotte may not be able to take in orally the required fluid amount thus requiring a PEG to go home - so be it. We are very pleased with her eating and drinking of nectars including the amount she can eat now. Progress is expected. But we feel strongly that breastmilk remain a main staple of her diet - any way she can get it. And discontinuing it would only compromise her health & well-being. We have come too far to allow that to happen.

Yes, Charlotte has a traumatic brain injury - we are not denying that. But you act like the TBI child is so different that "normal" anything doesn't apply. She is still a human baby so human milk is what she needs.

Side note: An influential mainstream nonprofit focused on protecting healthy infants is in the process of writing a story about Charlotte's journey through JDCH.  A similar story was done from her stay at St. Mary's. Much of it will be about the courage and camaraderie it took on your part to open up to new ideas, let down your guards, and get Charlotte where she was to where she is now. The goal here is not for her merely to survive, but to THRIVE. She needs live nutrient dense specialized food to do that. Human Milk is a Super Food! And you are Super Heroes for breaking with the past and making it happen.

We appreciate your cooperation.

Maria Parlapiano RN IBCLC

* here is another heartwarming story of a child who was adopted by a couple when she was near death and is alive today because of donated breastmilk  
 http://www.candgnews.com/news/journey-save-j

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 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!    
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
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
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