Coping

As most of you already know, my Princess Ella......joined the Lord's hands on 12/14/2010.

I have been neglecting my blog because quite frankly I don't even know what to say and I am not sure what I am ready to discuss.  It's all so painful, horrible, and new.

After she passed I remember feeling a feeling I have never experienced in my entire life.  I felt like someone ripped my heart out of my chest and was smothering me...... I felt like I couldn't breathe.  I couldn't believe this was happening.  She was with Raymond and I in our arms when she took her last breath.  An image that I will carry with me forever.   

The next days were a blur because everything was happening so fast.  Family came, planning, the service, etc.  Then everyone left and things resumed to "normal".  She's already been gone a week today and right now I am going through the normal "coping" phases I guess you can say.  Some days are worse than others, but I think it's so new that the worst has yet to come.  I feel so angry, why would this happen?  Only God knows and maybe someday I will understand this experience.

I go on living each day knowing my time on earth is temporary, and one day I will be reunited with Ella and Robert.  It will be forever next time we are together.

I have been spending the past 2 days thinking of when I found out about baby Ella.  I remember the moments like it was yesterday as it was one of the happiest moments in my life...........August 21st, 2009.  When they first discovered the triplets, they thought we were having 3 boys.  When I went in for my second ultrasound the tech said Baby B was a girl.  I felt so much joy and excitement in my heart, not that I wasn't in love with the boys, but I was so excited for our girl.  Raymond was excited as well.  It made the whole triplet baby pregnancy feel complete!  She was always the smallest my entire too of short pregnancy, but we used to always love to measure her legs, because the tech told us she had such long legs!  Poor Ella was smashed in between Robert and Joe and her long legged self  was always cramped up.  I hardly felt her kick because I think she couldn't move!  In almost all my ultrasound pictures Ella's legs were up above her head.  Well we were naming the babies ( I gave Raymond this important job and completely trusted he would do a great job and he did!)  I mentioned the name Ella early on in the pregnancy before we even knew of the 3.  Raymond wasn't so hip on it when I mentioned it.  I didn't want to micromanage the naming situation, but deep down I always wanted a daughter named Ella.  I didn't really mention it again and when we were getting serious about names Raymond said he wanted to name her Ella.  I wasn't sure why he had a change of heart (I think Mom Judy and Norrita had a great influence on him), but I didn't care.  I was so excited to get my little girl named Ella!

 I have her forever even if she isn't here right now...........my girl my girl named Ella that I always wanted so bad.   I think she is the most amazing person I've ever known and will ever know.

One of my most favorite pictures taken by Auntie Bonnie and Auntie Jacie

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!                     

Bad Weekend

Princess is not having such a good weekend. 

On Thursday I spoke with Ella's nurse and she said that Ella is a little on the irritable side.  She wasn't really sure why but it was just hard to console her.  We discussed the things that Ella likes and dislikes to maybe figure out why she was so pissy.  She loves her music and hates hates really hates wet pants!  The nurse said she would make sure her music box was going and keep her extra dry today and see if that does the trick, but it really didn't. 

On Friday morning I spoke with her nurse again and she seemed quite a bit happier, just really tired.  We kind of joked that maybe she is tired from her "pissy Thursday".  Then that night everything fell apart!  I received a call from her Dr. around 10pm.  Ella had became completely unresponsive and vomited up what appeared to be fecal matter.  They had been working hard for several hours trying to figure out what was wrong and trying to get her responsive.  They had to put her back on the vent (breathing machine) and move her to the ICU.  I was shocked and numb all at the same time.  I've been through this so many times with her I am not really sure how to feel, but it's still so incredibly painful everytime.  Just 2 days before this we were discussing the g-tube surgery she was scheduled to have today and discharge planning after that!  My heart sank with this news...............

At 1:30am the ICU Dr. called me to give me an update.  She said that Ella was stable, she was still on the vent.  They are giving her fentanyal and versed to keep her sedated.  They also started her on antibiotics to cover all their basis for possible infection. They did a CT scan of her head and abdominal cavity.  It appears that the shunt is functioning fine and her abdominal area just looked as though it was just full of gas.  They tapped her shunt to draw some CSF fluid for culture to make sure nothing is infected in her head.  Apparently when she vomited she aspirated and it went into her lungs causing her to develop pneumonia.  I expressed my concern to the Dr. about her vomiting.  Ella has never vomited in 13 months that I am aware of and for it to have fecal matter in it really concerned me!  They did a chest xray and her lungs looked terrible! 

Poor Ella..... they are doing everything they can to help her get better!  They have run tons of labs and cultures to make sure nothing is infected.  They also checked her stool for blood.  So far so good they have come up with nothing.  Therefore, there is really not an explanation to why this all happened.

Saturday and Sunday went pretty well.  She just kind of coasted along.  They started to ween her down on her vent setting Sunday and are thinking about possibly extabating today.  She is having lots of secretions come out of her mouth when they suction her.  Which is good, get the ickies out!  They have decreased her dose of fentanyal and completely DC'd the versed.  She is only getting .5mls per hour and extra PRN if she needs it.  Her chest xrays pretty much looked the same all weekend long and obviously her g-tube surgery has been put on hold.   

Lets pray for Miss Ella to have a speedy recovery.  She has been through so much and I feel terrible that she has to feel sick!       

Updates

Okay, so I am failing miserably at blogging, but I actually have a pretty good excuse.  The second half of November 2010 was complete and utter madness.  Now I am just not really sure where to start............so bare with me! Here it goes......................

11/18/10
Raymond and I arrived at the Children's Hospital that Wednesday night around 2am or Thursday morning which ever you prefer!  We went straight to the hospital to see Ella, she was in the PICU.  She'd  been struggling with fever and seizures on her way there and when she first arrived, but by the time Raymond and I had got there they seemed to have the fever under control.  They had added another antibiotic to the Vanco she was already on.  I can't remember what it was called.  We were so exhausted from our trip that we talked to the nurse and went straight to bed.  The next morning she was going to be having surgery.  They wanted to put a picc line in her left arm.  A picc line is a surgically placed IV, but you can draw blood from it and push fluids through it.  It is also used to push IV meds and it's a very good thing to have if an emergency happens.  She did really well with the procedure! 

At this point they seemed to have her seizures under control somewhat as well.  She was having them, but not dropping her stats really low and needing help with oxygenation.  She was able to get herself out of them in some sense.  The neurology team spoke with us and wanted to know a history on Ella from what we knew and remembered.  We discussed her past 13 months of her life and how seizures were a part of it.  At the end they decided to increase one of her meds to see if that helps get it under control.

On Thursday night they decided to transfer Ella up to a regular floor because she was doing very well.  So off to 6th floor we went.  I forgot to mention how awesome this hospital is!  Raymond and I were able to stay with her 24/7.  They had a bed for us in her room, bathrooms, showers, a TV with an xbox to watch movies, snacks/drinks, and even a laundry room.  We only stayed in our hotel 1 of the 3 nights I booked because it was so nice to be with her all the time!  They also had a 24 hour cafe, so we didn't have to leave to eat if we didn't want too.  We spoke with her new ped. docs on that floor.  They basically wanted to go over the last 13 months of Ella's life, her siblings lives, and our lives.  It was really hard.  I haven't had to do that yet and I didn't realize everything that has happened because I haven't laid it all out there like that yet!  I think it's human nature to cope with things that are painful by just trying to force yourself to forget them sometimes.  But, you think you have.......and then someone asks and suddenly you realize it's still there inside you. It was an emotional experience for me. We decided to stay in our hotel Thursday night because we were so exhausted from our travels still and wanted to get a good sleep.

Friday morning we'd arrived to total chaos.  Apparently early that morning Ella was really having a lot of seizures!  One of them was so bad the nurse called a code (not really knowing Ella that well as a patient) and there was about 30 medical staff in her room.  After that the nurse was concerned she wasn't going to be able to keep a close enough eye on her with having 3 other patients, so they decided to move her back to the PICU.  It was short lived and back to the PICU we went!  We understood we wanted what was best for Ella too!  Things were pretty uneventful after that they were monitoring her seizures and the Doc's were working with her trying to figure things out.  The game plan when we left was to first test her and see if she truly needed her shunt (I knew she did, but if they wanted to try it out okay) and if she needs it internalize her shunt tubing.  They tested her by stopping the tubing from releasing the fluid into her bag.  By doing this it doesn't give the CSF fluid anywhere to go so it stays in her head.  If that failed, which it did her ventricles were big after 24 hours, they felt the best option for little Ella was to put it in a vein above her heart.  They said she is too little to put it in the plurial cavity of her lung.  Some risks and disadvantages to putting it in the vein, well they cannot coil the tubing.  Coiling is nice so as someone grows taller the shunt tubing moves upward with them.  You can't do that in a vein.  The other risk is the tubing getting a clot on the tip, infection (this is always a risk they have to discuss with every single thing!), and last you can develop a rare condition that effects the kidneys.  It only happen in shunts that are placed this way.  It basically causes you to go into renal failure of course there is a medical term for this condition that I cannot give you.  The good news is it's easily treatable if it happens and completely reversible (that's what the surgeon said).  The bad news is the shunt has to come out if it happens and then we start over.  Positive energy people!!!!!!!!!!!!!!!!      

11/21/10
Before we knew it it was Saturday and we had to go home and get Joe!  We said our sad goodbyes and headed back to Rapid.  We knew she was in a good place and they have tons of specialist there working with her to help her get better and come home!

Then we returned home to find out we were finally going to close on our new house!  Finally!  We were so excited!  Tuesday 11/23/10, Ella had her shunt surgery.  They internalized her shunt.  The neurosurgeon contacted me to discuss the procedure.  He said he was going to remove the entire shunt system she currently had and start over with a new shunt on the other side of her brain, which was the right side.  We both agreed that was the best idea. Another surgeon was present for the procedure and he was going to place the catheter (shunt tubing) into the vein.  The procedure went very well and they were very happy with it.  The next day, Wednesday 11/24/10, Raymond and I closed on our house.  Went home to our now former rental house after closing to find out the house we were renting furnace wasn't working!  Only this would happen to us! I guess we are blessed we closed when we did, so I am not complaining! Soo..........we had to take Joe to my Mom's because it was like 40 degrees in there and start moving that night!  There we were moving at like 7pm in the freezing cold..... it was awesome!  The next 4 days is a complete blur consisting of moving, unpacking, some Black Friday shopping, and more unpacking!  Before we knew it it was this past week and the month was coming to an end! 

There you have it.........why I haven't blogged and I didn't have internet until this past Thursday!  Now you have my promises to keep my blog up and get on here a couple times a week!