The "Ties" That Bind Us

Ok so  I have been in the lactation business for over 20 years and have always been aware of the negative impact tongue tie  had on successful breastfeeding.   But did I realize the fact that I had ties as well as my immediate family???   NO - not until recently.  I was sitting in a IATP conference (International Affiliation of Tongue Tie  Professionals) and I had my epiphany.  

We were examining each others mouths- I looked at my own mouth after someone pointed out that I had an incomplete tear of my upper lip tie as well as three ties under my tongue!  So back I go reviewing my life from an oral/structural perspective:  I remember falling as a child 4 or 5yo and tearing my lip, I had a huge space between my two front teeth which I had bonded together as an adult. No thumb sucking or braces but teeth grinding, sleep issues and TMJ problems with related stress/tension headaches.  

Then I begin to think about my mom, deceased at 75, who suffered gravely from severe TMJ issues.

My heart ached for her as I recounted all her issues and suffering.  For as long as I remember, her jaw cracked and popped when she chewed so she ate fast and swallowed some of her food whole.  Severe insomnia, headaches, chronic sinus problems, gut issues and she could only open her mouth two finger widths.  I do remember that she tried some dentistry interventions but to no avail.  Ultimately,the day she died from a severe cranial hemorrhage, they broke her jaw when they intubated her.  Thank God she was already unconscious and unresponsive.  It was horrible.   

My siblings all have tie related issues so in our case it ran in the family. The following is from Dr. Gheheri's website an ENT and leading specialist in (TOT)

'Genetics: There are several studies that examine the potential inheritance patterns of ankyloglossia (tongue-tie). 

1. Acevedo et al in 2010 identified a Brazilian family that had both ankyloglossia and dental abnormalities. While it only looked at 12 patients, the study demonstrated an autosomal dominant pattern of inheritance. (For clarification, an autosomal gene is located on one of the 22 chromosomes that is NOT an X or Y chromosome. A dominant gene needs only one of the two copies to be passed to cause a specific effect - a 50/50 chance of getting the gene.) 
2. Trying to answer the question why males are more affected by ankyloglossia than females, a Korean study by Han et al in 2012 identified potential X-linked patterns of inheritance.
3. Klockars in 2009 identified that the prevalence of ankyloglossia in the population is approximately 4-5% and that inheritance is also passed in an autosomal dominant fashion (like Acevedo).

What these studies demonstrate to us is that there is likely some genetic predisposition towards ankyloglossia. My own observation in my patients is that greater than 50% of babies have a relative who also has ankyloglossia. As is the case with many genetic disorders, if a gene is passed from generation to generation, and that gene is potentially passed in a dominant fashion, more and more babies will be affected by that gene with each new generation and with increasing population size (assuming those affected will be able to have kids of their own).'

http://www.drghaheri.com/blog/2014/2/17/diagnosing-tongue-tie-in-a-baby-is-not-a-fad

My entire family suffered and continue to suffer many of the problems listed below: my mom attempted to breastfeed us (5 children) but was unsuccessful and pressured by her doctor to formula feed.

Symptoms & issues caused by ties include:

•colic/excessive crying                                                          •teeth gapping

•gassiness/fussiness                                                               •premature tooth decay

•gagging/spitting up                                                               •food & texture aversions

•reflux  (GERD)                                                                    •sleep apnea     

•nursing abnormally often                                                                        •grinding teeth/ jaw

•all night nursing                                                                    •facial tension/muscle fatigue                     •seems unsatisfied after nursing                                              •migraines/headaches

•falling asleep quickly while nursing                                      •snoring

•refusal to take bottle or pacifier                                            *mouth breathing                      

*slow weight gain/weight loss                                                 •speech issues  (lisp, replacing letters with others,      •dehydration/jaundice                                                                                                                 avoiding talking, falling behind)

•shallow latch/poor latch/pops on & off the breast

•"clicking" sound while eating (breast or bottle)

•heart shape of tongue tip or dent in middle of tongue

•painful nursing

•breast feeding issues (not limited to thrush, clogged ducts, mastitis, bleeding or cracked nipples, vasospasms, tell-tale "lipstick shape" after nursing)

•over-supply/under-supply (from babe not emptying breast completely)

It is common when someone is directly affected by something that they then make it their passion- this is true of me and many of my colleagues. I find this expansive work extremely interesting as its has "connected the dots" on so many levels.  The challenge lies not in the diagnosis or treatment but in the education of parents as well as the medical professionals caring for them.

My hope is that this diagnosis and treatment of TOT will be more accepted and done as early as possible in order to avoid not only breastfeeding problems but lifelong issues as well.  

*See TOT videos here: 

 http://agavepediatrics.com/tongue-tie

 https://www.facebook.com/video.php?v=729863723727623 (proper latch)

 https://www.youtube.com/watch?v=lrD9cemJNyw&feature=youtu.be (swallow study PTT)

 https://www.youtube.com/watch?v=-llmAhDoKno   Post revision exercises

                                         

*Suggested links:

• What is normal? See below:
  http://drghaheri.squarespace.com/blog/2014/10/8/the-difference-between-a-lip-tie-and-a-normal-frenulum
•  Answers to all your questions: http://www.drghaheri.com/downloads/
• *FYI-Preferred Providers:  https://docs.google.com/document/d/1BFcr9ZE_KvC4tb6QPLhA3Yrtc3GnCm4g9BIGLVXzUWE/edit
• These tethers oral tissues (TOT) require proper digital assessment – Dr. Kotlow's video for assessment. http://www.youtube.com/watch?v=5opSbXvL7yQ

Others pioneers in this field:

Dr Scott Siegel http://www.drscottsiegel.com/tongue-and-upper-lip-tie

Dr Larry Kotlow   http://www.kiddsteeth.com/mobile/index.php

Dr Robert Ghaheri  http://www.drghaheri.com/

Kevin Boyd DDS specializes in airway   http://www.dentistry4children.net

Ben Lynch –epigenetics http://mthfr.net

Brian Palmer DDS- sleep apnea/ BF  http://www.brianpalmerdds.com

IATP- International Affiliates of Tongue Tie Professionals

My Shell Story

I have never put this story in writing though I have shared it verbally many times as the "look how crazy I was"  funny antidote.  It took me years of self-realization to actually appreciate the awesome significance of it.  

Preparing to share brings back some very unsettling feelings about that time in my life.  I take a few deep breaths as I begin to write.  First, allow me to paint a picture for you of what my situation looked like back then....in 2005. 

By 2005, I had moved twice in the same town, renting always, maintaining 3-4 bedrooms in order to give my children some sense of stability.   Not to mention a place for all their stuff!   My children were 23, 21,19 years old at the time..  College, college, college.  One living home and going to college and working.  I was divorced - out 5 years by that time.  Since I was self-employed and my ex-husband was.....( you can fill in the blank) I received no alimony and no child support after my children turned 18.   Just so you know, all three of my children worked and supported themselves while in school.  They knew I couldn't afford extras and never asked me for money even though if I had any extra it went to them.

I had my same business, the lactation center which I was struggling to keep open.  I was working an additional job
 (30 hrs/wk) in an emergency center in order to get health benefits for me & my kids.  So my typical week would look like this: work  at my lactation center 9-5 M-Sat.  After close at 5pm, go directly to my second job the ER and work until 11 or 12.  Then I worked all day in ER on Sunday.  Yes, I was exhausted!

  

I was involved in a 3 yr. relationship with someone who was separated, not yet divorced, he had 2 children, one of whom lived with him.  When I first started dating him, my sister said, "He's basically interviewing for a wife and a mother for his kids." At the time this seemed OK since I was looking for someone to take care of me and my kids as well.

He took me to Paris & Germany the prior fall because he had a business trip.  During our stay in Paris, he surprised me with an engagement ring.  (mind you he wasn't divorced yet)  Very romantically done, we were on a boat ride at night on the Seine. The boat stopped to drop us off right at the Eiffel Tower, everyone gets off and he asked me to marry him  alone on the boat.  I shoved it on my finger ( it was too small) while I was thinking I didn't like the setting much and would never have picked out this ring.  So when I got home from the trip, people said, "What that on your finger?'  I would say, " Oh yeah, I guess I'm engaged."  - Ha!

I know I sound like a bitch but this guy was constantly buying stuff (big dollar store guy)) and planning things and doing stuff without my input at all. Being a saleman and CEO, he was tenacious to say the least. He was a non-stop, busy person, hyperactive, constantly wanting to eat and do things.  He always wanting of my time which of course I had little time to spare.  It was like having another teenager!  But his very needy, very smothering and controlling ways looked like wonderful love to everyone else.  His son who was a freshman in high school at the time, never saw his mother so I was his "replacement" mother (just what i needed another child) His son was with us all the time.  Again, I know that sounds harsh but frankly I feel no emotion now as I write just the truth.

So the picture: a stressed out, broke, exhausted mother of three, engaged to the wrong person.  And then what happens?  I get breast cancer.  That's right, at 46 years old, I was staring at a pathology report that read, ductal carcinoma.  This time the diagnosis was about me ,not a family member, not a friend, not a patient..

My first thought was for my children.  At least, they were grown and not dependent on me for their day-to-day care anymore- they would be OK without me.  My poor parents. Surely, was lucky to be in a dedicated relationship - some people are alone.  I know it sounds morbid but for me My fiance (wow, that's is scary) jumped into this new situation like he was tackling a quarterback.  Me, being the quarterback.  He was all over it and all his anxiety came with it.  His father had just died the year before and he was still reeling from that.  Lots of baggage from his marriage and family dysfunction all around.  

I got through the surgery just fine, physically.  Emotionally, I plowed through my life of responsibility and dedication like nothing happened.  I checked off the breast cancer like it was a chore on the list of things to do.  Never looking back, not once. 

As the months go by, my fiance slowly starts to fall apart and our relationship begins disintegrating.  On the outside, he appeared like a concerned lover, the best fiance ever.  He came to all my doctor appointments and was around me constantly.  Which I know took the slack off my children and parents.  But why did I feel like I couldn't breath, like i was being smothered.  I wanted to feel lucky, here I escaped a serious illness in time and people who loved me surrounded me but I was smothering.  I felt like he wouldn't let me "own" my cancer - like it was almost his and not mine.  I was the one with the surgical scars but did I really take the time to process, to feel the impact of those sutures on my life - was I allowed to? or did I not allow myself to.

Well, looking back I can't blame anyone but myself.....I told myself for many years that "he wouldn't let me own it - that's not fair"  when in fact it was me who wouldn't let me own it.  This is where we get to the shell story....

So that summer, 5 months after my bi-lateral mastectomy, my fiance and I rented a house on the beach in Florida for both our families.  This was my first vacation and I looked so forward to it.  

The beach was loaded with the most beautiful shells so I started picking them up.  And I kept picking them up and picking them up.  Before you know it, the entire beach house was full of shells.  The kitchen counter and tables, chairs and such.  I proceeded to sort the hundreds of shells by shape, size and color.  No one was allowed to move or touch the shells.  Then I decide I will make shell crafts for everyone I know.  So I went to Michael's and bought frames, boxes, crosses- anything I can fix a shell onto with a glue gun.

In the moment, I perceived this as being perfectly normal behavior for someone on vacation.  After all, one should be able to do anything they desire and making crafts is creative and healthy.  Maybe I admired them because they were so beautiful and perfect and I felt far from beautiful and perfect at the time.   Maybe it was because they had traveled a rough and tumble journey just like I had.  Maybe it was because I could save them from getting crushed and damaged because I felt crushed and damaged.  Who knows but they attracted me like precious jewels from the Nile.

Everyone there was quite tolerant simply because they loved me.  Several attempts were made to change my mind or curtail my efforts but they were just met with indignation and total resistance.  This was my thing so just let me do it and be grateful for you homemade shell gift!  

I made a ridiculous amount of crafts which I boxed and shipped home to give away.  I was quite proud and excited about my crafty accomplishment.  Then, like with most things I never thought about it again.

It wasn't until years later that I realized how "over-the-top" my behavior really was.  That  if I had done my emotional work, it wouldn't have been necessary to collect practically every shell on the beach, obsessively sort them and make enough crafts to put Michael's out of business!  If I had faced the fear and embraced the vulnerability instead of run from it, I could have enjoyed my vacation like a "normal' person and feeling more at peace with myself others 

 Clear as a bell to me now, I  inconvenience everyone on vacation, neglected them all because I desperately needed to control something.  Why? Because I felt so out of control.  Six months prior to that vacation, things were said to me, written to me, done to me that were very scary and that I had no control over.  My body was sick and damaged as well as my soul.  I had not processed any of it emotionally and so I took it out on the shells.  Those magnificent little shells had no idea they washed up just for me to use as an outlet for my trapped feelings.   These shells were where my grief, fear, anxiety and sadness were glued to.  Like a mosaic, some of my  hopes and dreams as well.

Nope, I never married, we broke up within months of that vacation and thankfully I am cancer free.  I share my story to show off my authenticity and imperfection.  Something I would have hid before and been ashamed of - not anymore I wear those like a badge of courage.  And now when I see shells at the beach I don't pick them up - I just admire their beauty and secretly thank them for the lesson they taught me.   

I have to admit though whenever I see a craft made out of shells I can't help but think- 'I could make that!"

Surrender Box

Julie presented this great idea after reading a recent blog about making a Surrender Box. 

 

 Divine inspiration was responsible for our box design.  It was very important to me that it be representative and mindfully done.  So I  went to Home Goods and searched for the right box to use- made sure I checked every nook and cranny.  Low and behold, one box left in the  perfect size with the words "Believe in Yourself" on it!  Seriously!

I texted my BFF, Monica, who is an artist and wrote " I've got a fun project for us!"  So in her craft room, we collaborated and created the following:

Top of the lid-

- the words " I choose to let go..."

in a pretty, flowing font.

-print it on lined tablet note paper

- burn the edges as we plan to ceremonially burn our "surrenders"

-affix a butterfly as a metaphor for releasing it to God, the universe as well as our "metamorphosis" to  inner beauty and spiritual growth. 

- affix the word "surrender" to flank the sides of the lid - bolstering and framing our message on top, representing our commitment and fortitude. 

- then we put clear coat in it to stick and seal it together for strength and durability .....just like we, as a tribe derive our strength from being cohesive and sealed in our love for each other. 

That's what went into making this box.  So let's fill it up!

Pumping For Charlotte

 Pumping for Charlotte

THEN 12/12

NOW 9/13

Some of you may be familiar with this story as it claimed some national attention. 

http://www.bestforbabes.org/miracle-milk-helps-heal-brain-injured-formula-fed-baby

 

 

My grandniece, Charlotte Rose suffered a traumatic brain injury at 11 months old.  Her miraculous recovery involved the use of pasteurized, banked breastmilk for 6 months. 
http://wwmdwhatwouldmariado.blogspot.com/2013/01/sharing-miracle_19.html

We started a non-profit and raised 20,000 dollars to buy banked milk.  http://charlottesmiraclemilk.wordpress.com/

Since June, Charlotte has been fed with donated milk from the mothers in my lactation center. To date these selfless mothers have donated 2,500 oz of their miracle milk – our goal is 4,000 as we plan to feed her until she is at least 2 years old.  Charlotte received the milk via cup and GT tube during the night and for naps- 22 oz/day. 

Charlotte & her PEG for feeding

CMM Donor

My CMM freezer!

 

Fed Ex Tom picking up our CMM delivery!

Below is the email I sent to our milk donors when I shipped our first box of CMM!

Dear CMM Pumping Brigade!

 I was overwhelmed with gratitude this morning when I looked at my large freezer full of breastmilk for Charlotte. Brought to tears by your generosity and kindness, I packed our first box of miracle milk - 155 oz!  So far we have collected 836 oz!!!

 There are no words to "express" what this will mean to the life of our little girl, Charlotte Rose.  I have attached a recent picture of her (now 16 mo) exactly 6 months from the date of her injury-

Her astonishing recovery could never have happened without human breastmilk.

 I so appreciate that there is much more than milk in the bags and bottles that you drop off- its liquid love, dedication, commitment.......that's what makes it and you so special <3

Thanks for helping to heal Charlotte as well as me:)

Self-Compassion Comes Full Circle

Dearest Tribe,

Julie’s post about compassion struck a chord with me.  Many of you have heard me say- "Life comes full circle - the patience you need now with your little ones is the patience you will need later when caring for your elderly parents"

Well I am living those words, People!  I am knee deep in that place now- caring for my Dad who is terminally ill with cancer.  As you love your children and only want the best for them, I love my dad but I find my “emotional thermostat” is near bursting at times. 

My dad needs all the help a small child does- bathing, dressing and nutrition. Safety, security, shelter & love. There are some things he requires that can only be done by a nurse (me) so we are now "attached at the hip".  He prefers only me as well- sound familiar?!

You know how your baby has a huge "blow out" right before you are getting in the car? When we go out, (no, he doesn’t have a “blow out”-Lol, at least not yet- yikes!) but my dad inevitably has to “pee” right as we are leaving and/or have to stop frequently to prevent embarrassing accidents.

 Older folks are messy, picky eaters.  They can’t help it just like your child can’t help it but none the less- it can be annoying and unsightly.   Frequently, his clothes are permanently stained but he would wear them just the same, no different from your little ones. But what am I supposed to do, never take him out?

How about all the paraphernalia you have to lug around? Well, it is necessary I have all his stuff with me as well: glasses (reading, distance & sun) hearing aids (otherwise we scream at each other in public) dentures with accessories (or else he can't eat),cane (we walk very slow- I help him up & down stairs, buckle him in & out of the car) jacket or sweater ( he's always cold) medications & various medical stuff.  Velcro sneakers, soft, cushy clothing (sweat suits- easy to put on & off) - sounds familiar, I reckon :)

Seniors have issues with sleep similar to your little ones.  Unable to fall asleep, stay asleep or sleep at night but at least old people nap during the day.  I mean, how many drugs can you give someone before anyone becomes suspicious?!   Let me add, “elder-proofing” the house is a must, as trips and falls can be dangerous and deadly.   Who enjoys going to the ER?  Anyone?!

Like children, one of the hardest things is dealing with their changing emotional state.  Children are exploring, pushing, testing and constantly challenging their environment and the people around them. Seniors lose their ability to effect change, leaving them feeling dependent, burdensome, inept and melancholy.  Creativity, distraction and humor are tools I pulled out of my parent repertoire to help combat much of his negative self-imagery.

So I imagine that I painted quite the picture for you.  Can i tell you, it is truly uncanny that my range of emotions are so similar to when I was a young mother? I am not talking about the pleasant emotions – I am talking about the crazy, scary ones.  I bet most of you can relate. Here goes:

Prior to my dad being sick I had my own “little life”.  I came and went as I pleased, didn’t have to answer anyone. I am not solely responsible for anyone as my children are all grown and on their own.   So where do I suddenly myself?  In a sea of irrational thoughts that sweep me away more frequently than I care to admit.  Trapped! Cheated! Resentful! Angry! Vulnerable! Anxious! Sad! "How long can I keep this up?" I ask myself. "Why me?" I ask.  Sometimes I wish I could just run away - keep driving and not come back!

My life as I know it is -disrupted - gone - possibly over. I have "no life now and never will!"  Not to mention, the awful guilt that goes along feeling that way.   This is my crazy self-talk.   

But guess what?  I did recognized it.  It was unexpected and took me by surprise but none the less, I recognize it and know what to do to help myself.   Which is,  I need to "check in" with myself and with those around me who love & support me.  Take advantage of the hospice services offered to me as well as my dad.  Stay present in the moment, take it one day at a time knowing “this too shall pass” (no pun intended). But most of all, I need to have great compassion not only for a sweet man facing death but for the devoted daughter caring for him.

Hugs to you & me,

Maria

Dad & Me, St Patricks Day 2013

 

 

 

 

My dear friend, Carol replied to this post with a very powerful story:

 

"I think I told you that the social worker at my mom's assisted living facility encouraged me to ignore her phone calls ( sometimes 4-6 times an evening). Her exact words "just treat it like you would your crying baby". And that's when the penny dropped. Ignoring a crying baby is the beginning of a lifetime of thinking it's ok to ignore a loved one in need.  

I can't always take my Mom's calls but why wouldn't I when I can ?  And I never told the social worker that I NEVER left my babies to cry. It was chilling that she assumed that everyone does that."



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.”  

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