Ella

Some not so great things are happening right now...........

Life has gotten very tough at our house.  Ella is not well at all.  Raymond and I have had to make some very hard decisions the past few day.  I am not even really sure how to began my entry...........  It seems that we have had to make a lot of very tough decisions through the coarse of this journey, but this one is the most horrible by a long shot.  I never wish this on any parent in the entire world. 

After a lot of discussion with Dr.'s, going over Ella's prognosis, and painful conversations we have decided there isn't much left for anyone to do for Princess Ella at this point.  Everyone has tried numerous things numerous times to try and help her and make her well.  Raymond and I have decided her best option is DNR.  Which stands for do not resuscitate.  Ella is suffering a great deal right now and she is very very sick.  All of the options they have in their thoughts to try and help her just don't seem like very good ones anymore...... and they do not seem like they are going to help us move ahead and get her better/home.  We have decided she has been through enough pain and suffering and we cannot bare to watch her suffer anymore.

We went over Ella's current status.  Right now she is on a the ventilator which a machine that consists of putting a tube into your lungs and takes breaths for you.  She is doing some breathing on her own, but not nearly well enough to survive without the machine.  We also discussed her neurological status.  She has had CT scans and EEG's since she's arrived in Denver.  The Dr.'s told us that her brain is getting smaller in size compared to her last CT scan.  He basically explained it to us that when you stop using something like a muscle for example you start to lose it.  Our brains work the same way.  They also discussed with us the findings of her EEG tests.  The EEG measures and monitors the waves which shows the brains activity.  This test has shown them that Ella's brain waves are extremely slow.  The Dr. basically described Ella's neurological state as her being severely neurologically impaired.   We discussed her abdominal issues.  Ella cannot eat on her own and her body struggles with digesting her formula.  When she was born she had a perforated bowel and that was the beginning of the many problems she has faced with her tummy.  The plan was to put a g-tube into her stomach, so she could be fed that way instead of into the NJ tube in her nose.  Unfortunately, Ella's tummy area is a very big mess from all the surgeries she has had on it.  She has a lot of scar tissue, plus she suffers from reflux.  Performing this procedure on her would be difficult and may not be successful.  There are still risks involved with this surgery and they do not feel like it will be Ella's cure all for her feeding issues.  They can't guarantee she it will make her feedings better or that she will not get an infection.  Another major complication Ella faces is her immune system is suppressed.  She can barely fight infections and is on antibiotics almost all the time.  It seems from her past history as soon as she gets off antibiotics another infection arises.  She also has a condition where her immunoglobins are low.  Immunoglobins are part our immune system that helps fight infections as well.  There are 3 types of immunoglobins and Ella's IGA and IGG's are low.  Ella also has a shunt to control hydrocephalus.  Hydrocephalus is a condition that is a result from a brain hemorrhage at birth.  I causes your head and ventricles to become engorged with CSF fluid because it doesn't drain into you spinal column like it should.  The shunt drains the excess CSF fluid into a different part of you body to to be absorbed.  Ella is on her 3rd shunt because she struggles with them getting infected.  Once the apparatus is infected it has to be removed and the infection has to be cleared up before a new one can be placed.  Currently it appears as though he shunt is functioning fine, that's the one good thing we have going on for her.  Typically shunts tubing is placed into the abdominal cavity for the CSF fluid to drain off, but in Ella's case it cannot go into her abdominal area because it does not function correctly and has a tendency to become infected.  

That is just a very brief status of what Ella has on her plate right now.  We love this baby so unconditionally.  Like I've said in the past we love her so much that it hurts and I wish I could trade places with her.  We believe that no one deserves to have no quality of life and we refuse to hang on to a false belief that all this will get better and go just go away someday.  We can't bare to watch her suffer or prolong her suffering anymore.  Everyone involved in this has given 110% in trying to help her and get her well, but reviewing her current situation we believe we've hit a stand still and no one really knows what to do to help her anymore without making her suffer tremendously.  Raymond and I want her to feel no pain and not to suffer anymore.  We love her so much and this is so incredibly painful for us and everyone that loves her.  I can't help but feel someone is stealing a huge part of my heart from me.

I don't believe taking her home on a vent with a feeding tube is any way for someone to live.  After hearing about her neurological impairments it was apparent to us that Ella doesn't deserve to live her life as a vegetable.  

Right now the plan is to have her transferred to Rapid City, so we can be with her and spend some quality time and moments with her.  We plan to take her off of the vent and spend all her last moments with her.  We do not know what the future holds or how long or any set in stone facts.  All we know is we are not going to make her suffer and feel pain anymore unnecessarily.  

Thank you for all the love and support we've received so far.  There are no words to describe our gratitude!  This is going to be a very difficult time for us I am in complete tears and crying just typing everything it so hard to tell all of you about this because we know how incredibly painful it feels.  I wasn't going to post a blog, but it's easier to give everyone that cares and loves us a place to go and find out what is happening instead of painfully going through the facts and findings to everyone that asks. 

Please keep us in your prayers and thank you again for all the love and support!