Baby Sister For President Obama

Baby Sister's Surgeon, Dr. Michael J. Rutter

http://www.kidsent.org/Faculty/cv/pdf/Rutter_cv.pdf

Specialties

Tracheal reconstruction and complex airway surgery

Education and Training

Fellowship: Cincinnati Children’s Hospital Medical Center, 1997 to 2000; Health Research Council of New Zealand Training, 1995 to 1996; Fellowship in Clinical Research, New Zealand, 1996.

FRACS: Part II, Sydney, 1996.

Primary FRCS: Glasgow, 1989.

BHB: Auckland School of Medicine, 1983.

MBChB: Auckland School of Medicine, 1986.

Residency: Various RMO posts, New Zealand Otolaryngology Training Scheme; Health Research Council of New Zealand Training Fellowship in Clinical Research.

Certification: USMLE II, Sugney, June 1995; USMLE I, Sydney, June 1996; USMLE III, Cincinnati, July 2000; Board Certification, American Board of Otolaryngology, 1999; Ohio State Medical Board, 2001.

Baby Sister Is Discharged From CCHMC

What a joyous day!  Baby Sister was discharged from Cincinnati Children’s Hospital this morning, and is at the hotel resting comfortably.  We can already see a BIG improvement in Baby Sister because her breathing is very quiet, and she is NOT flopping all over the bed as she sleeps… indicating that she is getting more oxygen and therefore able to rest while she sleeps.  We are working on a soft menu to support her nutritional needs for the next 10 days, and since she appears so well, we are planning to return to Maryland tomorrow in hopes of getting there before Hurricane Sandy.

We are extremely grateful for all of the many prayers, words of encouragement, and support during this time.  We can’t thank you enough... THANK YOU!  THANK YOU!

Baby Sister UPDATE

Baby Sister did very well overnight. The doctor's just examined her, and her surgical sight and drain bag look great! They will remove it later this morning. She will then see the Speech Team to evaluate her ability to swallow, and that will dictate if we can be discharged today. Thank God for His Awesome love and power. Everyone here has been really great! Thank you Cincinnati Children's Hospital! I also sends a special shout out to Kathy, Baby Sister's PICU nurse. She has been wonderful overnight! Thank you for attentive service to Baby Sister and me.

Baby Sister's Surgical Before & After Photo

An Aunt's Prayer for Baby Sister

Heavenly Father, it is in the name of Jesus Christ Your Son and our Saviour that I come to you this afternoon. I am continuing to pray for the safety of my niece Miss Malinda Eryn Barnes, our little Baby Sister. They are cutting, removing, stretching, and pulling on her in an attempt to help her to breathe, eat, and grow up without constant discomfort. We know that You are the Healer. Post Your strongest Angels around her. Guide the hands, minds, thoughts, and intentions of the medical personnel and let Your mighty, powerful, merciful, loving will be done. Take charge I pray and touch my sister and her husband and help them to stand together in faith that You are in TOTAL control. Thank you for hearing and answering our prayers Lord. I can't wait to see what the end will be and we are looking forward to a Miracle. Thank You in advance. We love You Lord. Amen.

Baby Sister is BACK in Cincinnati

Baby Sister arrived in Cincinnati, Ohio on Wednesday, October 24, 2012 in preparation for surgery on Thursday, October 25, 2012.  She will have an  Arytenoidectomy w/Laser & Microlaryngoscopy and Bronchoscopy and Thymectomy.

An Arytenoidectomy is a permanent and irreversible surgical procedure whereby the laryngeal inlet is widened in its transverse axis, providing a larger airway for respiration.

A Microlaryngoscopy and Bronchoscopy (MLB) is a test that allows the doctor to look into Baby Sister’s airway (larynx and bronchi) using a small tele

scope. This telescope is contained in a piece of equipment called an endoscope.

A Thymectomy is surgery to remove the Thymus gland. This gland is located in the upper portion of the chest, behind the sternum (breastbone). The Thymus gland helps control immune cell growth. It is usually very active when you are an infant, but its function tapers off as you get older.

We are prayerful that these procedures will give Baby Sister some medical relief and allow her to live a more normal and healthy life.  

Keeping the FEAR Away!

My husband use to say, “Be careful of what you ask for because you just might get it.”  Well, I feel like I’m about to get something, and I’m not sure what “it” is or if I want it.

Since May 2012, I’ve been trying to figure out where I can take my little girl to get some help for what has become chronic aspiration pneumonia.  While I want help, I’m not sure I’m prepared to go through the steps to get the help.  And if I’ve learned nothing else, I know my plan are pale in comparison to what God has planned.

I’m not distrusting God, but all of the “what ifs” have starting filling my head.  Am I doing the right thing?  What should I be doing?  Is this the right thing?  What if this happens?  What if that happens?  What if they say this?  What if they say that?  What about my other children?  What if I have to stay for a long time?  Will I have a job?  Will I have enough money to take care of our needs?  And the list of “WHAT IFS” go on and on and on.  The Energizer Bunny has nothing on the number of thoughts I’m contending with in my head.

Anyway, I don’t know what tomorrow will bring, but I reaffirm my trust in my personal Lord and Savoir Jesus Christ. My God is awesome, and I know He can do all things EXCEPT fail.  My prayer is for God to strengthen me to endure all that will come next, and for me to recognize that God is still on High!  

Cincinnati Children's Hospital Visit Confirmed

Baby Sister, my Baby Sister. We confirmed with Cincinnati Hospital today, and we will be taking her there on August 26, 2012. She will have eight test/evaluations done during that week, and prayerfully, they will give us a plan on how to resolve her reoccurring medical problems. We know many people are praying for Eryn, and we appreciate your prayers; however, starting August 26, we will be praying for her every morning at 5:30 a.m. Please join us at this special prayer time. More details will following for a prayer line number so you can pray with up. Matthew 18: 20 For where two or three are gathered together in my name, there am I in the midst of them.

Baby Sister’s Walk-A-Thon 2012 is History

The 2012, Baby Sister’s Song: EA/TEF Wallk-A-Thon is in the history books; however, I can only report what I’ve heard about the event.  Unfortunately,  I did not attend, even after weeks of planning and prep work to be there.

The morning of July 29, 2012 started off just fine.  My sister and I had worked all night to put the finally touches on Baby Sister’s Song: EA/TEF Walk-A-Thon.  At about 5:00 a.m. we started getting dressed so we could be at the trail by 6:30 a.m. so we would have plenty of time to get everything set up.

Right before I walked out of the door, I woke up Baby Sister aka Eryn.  I checked her out as I usually do, and she seemed ok.  I knew she didn’t feel a 100%, but nothing in her demeanor was alarming.  I had taken out her clothes, and I had asked my oldest daughter to comb her hair and get her dressed so I could go get set-up.  She agreed, and I left home.

I arrived at the WB&A Trail at approximately 6:45 a.m. and was working to unload my van and get the tables set-up for the walkers.  My husband, Frank, arrived shortly after I did, and he too was working to ensure that this day was going to go off without a hitch.

At 7:23 a.m.,  Frank’s mother called him and said they had just called 911.  My husband turned and started running toward his car.  I didn’t know what was going on, but I felt his urgency, and began to run after him.  As he approached his car, and I approached my van, I asked him what was going on.  He told me that his mother had just called 911 for Baby Sister.  I began to move more quickly towards my van, and then my husband told me to get in his car.  Once inside his car, he told me that Baby Sister had stopped breathing.  At first I could not understand him, so I asked again what had happened.   He told me again as he burned up his tires and breaks trying to get out of the parking lot.

He drove like a wild man, and I held on for dear life while I prayed and asked God to please spare my daughter’s life.  To allow her to breath, and not let me find her dead when I returned home.  I also made several calls to my house, my oldest daughter, and mother-in-law, but nobody answered my calls. The chills from my thoughts paralyzed me.  While we made our way to our child, my husband kept checking the time… it’s been two minutes.  Now we are at three minutes.  Oh God, it’s been four minutes., and so on.  We got home to find my family and daughter on the front porch, and Baby Sister was breathing!!! Praise God!!!

Baby Sister was very dazed, but she was alive!  Thankfully, she was alive.  My daughter was crying hysterically and my mother-in-law was still on the telephone with the 911 operator.  My husband took over the telephone call, and my mother-in-law told me what happened.  It seemed like a lot of time had passed and the paramedics would never get to us.  I told my husband to tell them that we were just going to take her to the nearest hospital, but by the time we were at that point, the paramedics arrived.

As the EMT workers began to ask me questions and move us into the ambulance, I realized that I had left my purse, keys and other important information in my van at the trail.  It’s so funny how those things were no longer important.  I could get a new van, purse, keys, money, credit cards, etc., but I had only one Baby Sister, and she was NOT replaceable. 

I also thought about the Walk-A-Thon that I had spent the last 53 days planning, and the thought came and it went.  Either my sister and the volunteers would make it happen, or they wouldn’t, but again, the walk was very insignificant compared to my daughter’s life.  Fortunately, my sister and the other people there got things set up, and Baby Sister;s Song: EA/TEF Walk-A-Thon 2012 took place.  Maybe not as I would have done it, but as it was done, and it went well.  The people who attended reported that the walk was nice, and they enjoyed it and each other’s company.  

As for Baby Sister, she is also doing well after spending most of the week in the hospital.  We still aren’t sure what caused her to stop breathing, but we are grateful that she is fine now.

Baby Sister's Hat Set By Juskj

Please support Baby Sister's Song: EA/TEF Walk-A-Thon by purchasing a Baby Sister's Hat set by Juskj.  For each Baby Sister's Hat set sold, Juskj will donate $5 to Baby Sister's Song: EA/TEF Awareness.  Check out the link below.

http://juskj.bigcartel.com/product/baby-sister-s-hat-sets

Baby Sister Needs Your Support

We are very grateful that Baby Sister is a EA/TEF Survivor!  Yet her song continues... and her challenges have continued causing her to need more specialized medical care.  Since October 2011, Baby Sister has been hospitalized frequently with aspiration pneumonia and has been on 19 different courses of antibiotics and steroids!!!  She is either going on a course of antibiotics and steroids or coming off of a course.  While our family is blessed to have insurance, we have incurred significant out of pocket expenses, and are faced with an even greater expense to get Baby Sister the help that she really needs. 


 In August, we will be taking Baby Sister to Cincinnati Children's Hospital Medical Center for an initial consultation and evaluation that consists of a week's worth of testing.  Baby Sister will be evaluated by an elite team of doctors that are experienced in working with patients with difficult esophageal disorders.  After the initial week, we will be given a treatment plan for Baby Sister and will need to return to Cincinnati Children's Hospital for treatment.  We are excited about the possibilities, and prayerful that she will finally be medically stable and can live a more normal life.

Therefore, we are hosting Baby Sister's EA:TEF Walk-A-Thon, selling speciality items, and promoting other events to raise awareness about Esophageal Atresia and Tracheoesophageal Fistula; and to raise money to off-set anticipated expenses.  Your contribution and support will have a lasting impact on a well deserving life... Baby Sister.

For more information on how to help, please visit http://ShadeNaturals.com/Baby-Sisters-Song/.

Many Thanks in Advance!!!

We are getting down to the wire... Only give days until Baby Sister's Song Walk-A-Thon! Make sure you register athttp://ShadeNaturals.com/Baby-Sisters-Song-Walk-A-Thon/. Thank you!

Only 8 Days Until Baby Sister's Song: EA/TEF Walk-A-Thon

Help Baby Sister Collect Hearts

Baby Sister's Hearts

Baby Sister is going to have to go through an awful lot over the next few months.  She’ll be traveling, meeting new people, doctors, nurses, and hopefully some nice new friends.  It’s going to take a lot of courage to go through surgery, heal, and get through this new phase with a smile.  What Baby Sister needs now more than ever is Faith and Courage.  Will you pray with us that God will give her the Heart to go through it all?  Please show your support for Baby Sister by helping her to find her Hearts.  The more hearts she receives, the more she will know that you are praying for her and helping to support her in this very life changing experience.  You may help her to collect as manyhearts as you like.  God bless you and we Thank You for your love, prayers, and support in advance!

Purchase the Pink Heart for just $5.00 and the Blue Heart for only $1.00 and have your name and heart posted right here on this page within 24-48 hours showing that you support EA/TEF Awareness.  Your Heart will encourage Baby Sister and your Donations will help get her to Cincinnati and help to further support the Cincinnati Children’s Hospital in their effort to reverse the effects of the EA-TEF birth defect.

Countdown to Baby Sister's Song: EA/TEF Walk-A-Thon

It’s Just An Esophagus

What a story!  This is the kind of result we are expecting for Eryn.  She has been through so much, and it seems that the medical doctor’s we have encountered just don’t have the medical experience to help her.  We’ve been seen by the most elite hospitals and doctor’s in our area, and we keep coming back to the same problem.  It doesn’t seem like it should be a BIG problem, It’s Just An Esophagus, but it is.  Food MUST get into the stomach to fuel the body, and when it gets into the lungs, it creates a life or death situation… period.  Eryn has had food in her lungs way to often.  She has endured lots of pneumonia and upper respiratory infections, and it’s like we are play Russian Roulette with her life.  The game has to STOP, which is why we are taking her to Cincinnati Children’s Hospital.   

Baby Sister is Going to the Esophageal Center at Cincinnati Children’s

Tracheoesophageal Fistula Defined

Esophageal Atresia Defined

Esophageal Atresia Treatment

Esophageal Atresia Explained

The Many Faces of Baby Sister's Song!

Sponsorship Letter

Pulmonary Outcome of Esophageal Atresia

Pulmonary Outcome of Esophageal Atresia
Children with esophageal atresia (EA) are now reaching adulthood in large numbers. Many patients, however, continue having functional problems with their respiratory system after the initial postoperative period, and it appears important that follow-up for these children focus not only on gastrointestinal pathologic condition but also on respiratory pathologic condition. There are now several series reporting long-term follow-up in adolescents or young adults after repair of EA ^(1–4), and reviews have been published recently ^(5,6). The objectives of the present review are as follows: to summarize the long-term pulmonary outcome of children with EA, in terms of symptoms and respiratory function, and to focus on the underlying mechanisms contributing to the occurrence of prolonged respiratory complications.


Click the link to read more!

Baby Sister's Song: EA/TEF Awareness Campaign

Baby Sister's Song: EA/TEF Awareness Campaign

An Adult with Esophageal Atresia with a Tracheoesophageal Fistula

Meet Becky...  Becky's Story -- An Adult with EA/TEF.  Like Baby Sister, she was born with Esophageal Atresia with a Tracheoesophageal Fistula.  She has gone through many medical experiences, and even now, continues to have medical issues associated with EA/TEF.

While she has managed to carve out a wonderful life for herself, she has had to endure lots of medical problems and even lost her right lung in the process.  This birth defect is serious, and its complications can be devastating and costly.  Becky is one of the lucky ones, but a lot more RESEARCH and information is needed to improve the quality of care for each of these very special people.

Please join us in our efforts to heighten awareness about this birth defect and raise funds for Baby Sister to go to Cincinnati Children's Hospital Medical Center in August; so she can receive evaluation and treatment for her condition.

About Baby Sister's Song

Baby Sister’s Song: EA/TEF Awareness is a project designed to heighten awareness about a rare birth defect called Esophageal Atresia with a Tracheoesophageal Fistula (EA/TEF); discover medical solutions to it; and get help for my 4 year old little girl, Miss Malinda Eryn. This birth defect affects about 1 in 4000 live births, yet its cause is unknown.

You would never be able to tell, just by looking at Eryn that she suffers with a life threatening birth defect. On the outside and on a good day, Eryn looks like a happy and healthy child. Sadly, she has suffered with life threatening medical problems right from the start.

At birth, Eryn’s esophagus did not connect to her stomach, but was connected to her lungs. So, on the second day of her life she had surgery just so she could eventually be fed by mouth and be able to breathe without getting food into her lungs. Since then, she has had several surgeries, many invasive and non-invasive procedures, lots of doctor’s appointments, and a plethora of medications in an effort to correct her birth defect.

Yet, she still suffers with multiple bouts of chronic aspiration pneumonia and GERD. As a mother, this has been a very heart breaking experience. I just feel so helpless. Babies born with EA/TEF often have an array of other medical conditions. Unfortunately, Eryn is no different. She, too, has 11 other conditions and these have caused a great deal of wear and tear on her little body.

Eryn has had pneumonia more than 10 times in her short little life, and multiple respiratory infections. Her long term outlook seems very grim without finding a medical solution to her problems. She is susceptible to lung scarring which leads to the thickening and stiffening of the lung tissue and often times Chronic Obstructive Pulmonary Disease (COPD). To control her illness, Eryn has been on multiple courses of antibiotics, steroids, and inhaled medications which also damage her body. In addition, due to her Gastric Pull-Up, the procedure to connect her esophagus to her stomach, she has severe GERD because part of her stomach is above her diaphragm, which also dims her future because it leads to Esophagitis and sadly, Esophageal Cancer.

So, as you can imagine, we are constantly on our way to or from the doctor’s office or hospital. Our little daughter is constantly going on a particular medication or coming off of one. There is only so much her little body can take. This way of life simply cannot be sustained. It just can’t go on forever.

Eryn clearly needs more specialized medical help than she has received thus far. She needs cutting edge medical intervention. Cincinnati Children’s Hospital has a reputation for treating children with even the most complex esophageal disorders. We believe Cincinnati Children’s Hospital Medical Center is where she can get the help that she so desperately needs.

Therefore we are have a Walk-A-Thon for Eryn on Sunday, July 29, 2012 that will help Eryn get to Cincinnati Children’s Hospital, as well as help with EA/TEF research. Please consider walking with us and/or sponsoring this very important event. To register, go to http://www.shadenaturals.com/baby-sisters-song-walk-a-thon/. Your support is very much appreciated.