The weight roller coaster

Once Ella was released from the NICU she did mostly well.  She had an instance of reflux that was tough for her to experience and us to watch because it caused to arch her back in pain.  In addition her eyes rolled in the back of her head and to be honest it looked as though she was having a seizure. At 4 months old we switched pediatricians and he put her on special milk and placed her on prevacid for her reflux.  This seemed to fix the problem.  For the next several months she gained weight and grew according to her growth curve.  At her 9 month check up she was 21 lbs.  This would be the last time we saw her at this weight until she was 3.5.

At her 12 month check up she was down to 18 lbs. We went back 2 weeks later for a weight check and she was down even more to 17.5 lbs.  This was the beginning of a long battle to determine why she was not growing.  At this point she was now diagnosed with failure to thrive (aka FTT).

We saw specialist after specialist.   Every visit I would cry and just please with them to fix my baby.  She was literally wasting away to nothing before our very eyes.  Some days I felt like a maunchausen by proxy mom.  I have no clue how many times I cried for them to just 'fix my daughter'.  Finally around her second birthday the gastro drs in pittsburgh thought maybe she had an obstruction and that was causing her FTT and weight loss.  They ordered an upper GI and a lower bowel series.  In a typical child the intestines are on the left and the appendix is on the right.  Ella had what is called malrotation of the intestines.  Only her malrotation was quite complex.  In a typical malrotation case the intestines are on the right and the appendix on the left.  With Ella her appendix was on the left, her intestines however were in the middle of her stomach and they were wrapped and twisted around her kidneys and liver not allowing food to pass through therefore not providing her with the nourishment that she so desperately needed.

On November 22, 2010 she had the surgery to repair her intestines.  At that time they did not know that her intestines were twisted.  The surgery that should have taken 2-3 hours took over 6 hours!  The wait was awful!  At the end of it Ella's stomach was fixed.  She spent the next several days in the hospital.  She was on heavy amounts of pain medicine and slept a lot.  By the time it was all over she was eating and the hope was she would gain weight.  And she did...however kids triple and then some their weight between birth and their 2nd birthday.  After they turn 2 their growing slows down dramatically!  When she went in for surgery she was a whopping 13 lbs!  When she left she was a little under 12 lbs.  By the time she went back to Pittsburgh for her post - op appt she was up to 15 lbs.  Slowly she started to gain weight.  Today she weighs approximately 30 lbs....at the age of 5!

This was taken day 4 after her surgery

This was the day she came home from the hospital following her surgery

This was about 6 months post - surgery 

Does she have CP or doesn't she?

This was the question that we had for the doctors at Shriners shortly before she turned 1.  Unfortunately we did not get that answer until much later.  

When we took Ella to Shriners for her to be evaluated she cerebral palsy (aka CP) they found out that Ella had bilateral hip dysplasia.  She had to be in this brace for 6 months....

To say thats she hated this brace would be an understatement!  She cried most of the time that she was in it.  Looking back now I am not sure if it was because of the brace or because she was in pain in general.....Take a look at the post immediately after this to understand that statement.  Most nights were sleepless for us as she would cry most nights because she was so uncomfortable.  

This brace limited her ability to move, sit up, roll over, crawl and walk.  it took a lot of patience during this time to not go bat shit crazy!  

As far as the CP goes it was determined that she 'might' have mild CP due to her floppy muscle tone but she seemed to be doing okay so it wasn't something that we really pushed to determine more information.  To be honest the whole 'low muscle tone' thing is something that I will address in another post.  I have seen kids with severe CP and I am just thankful that Ella is not one of those kids!!  

Ella's exciting entrance

The day that Ella was born started much the same as most every other day but it ended rather excitedly.

The day before she was born I was in a stressful family situation.  I won't mention specifics of what or who was the cause of the stress here....knowing that I was under stress is all that really matters in terms of Ella's birth.  Because of this stressful situation I was in I started to have contractions even though I was receiving progesterone shots to prevent preterm labor.  I decided the best thing for me to do would be to stay home and rest on my left side.  The next morning I had an OB appt anyway so I figured I would address the contractions at that time.

The next morning (9/30/08) at 830 I went to the Dr.  He decided to err on the side of caution and do a non stress test.  This test showed that I was having some pretty strong contractions every 4-5 minutes.  I was immediately rushed to Hamot's L&D.  At the hospital they gave me a shot of brethine to stop the contractions and a shot of steroids to mature Ella's lungs if she was born premature.  The brethine caused my BP to bottom out but the contractions stopped.  Later that evening they wanted to do another non-stress test to check on Ella especially with my low BP.  They said that the heart rate on the monitor was mine.  I thought that 80's were too high to be my BP.  To make me feel better they ordered a sonogram to check on Ella.  She was resting so her HR was in the 120's during the sonogram.  A little bit after the sonogram they tried the non-stress test again.  This time they were getting readings in the 70's.  Again they said it was my HR even though I felt for sure it was Ella's.  This went on for 4 hours.  Finally the Dr came in and said that the HR on the monitor was in fact Ella's and I would need an emergency C-section.

When they did the surgery they found that she had a knot in her cord cutting off her circulation and thus causing her decreased HR.

She endured several set backs while in the NICU for 18 days....she had a hole in her lung and needed a chest tube.  She had severe jaundice and required the bili lights for 10 days.

  She also was on CPAP for 7 days and required oxygen for 10.  In addition she kept having what they called bradycardias.....this is where her heart would become too low or sometimes stop.  She ended up leaving the NICU on an apnea machine to track and monitor these episodes.

Finally on October 18th she was released to go home weighing a whopping 4 lbs 9 oz!

New blog. New fight!

While I do have another blog I rarely post there and to be honest I really don't want to keep posting 5 page long updates on Facebook in an effort to keep everyone updated on how Ella is doing what is the latest update on her.  So I figured this would be ideal.  A blog dedicated to the most special, amazing, strongest, little girl I will probably ever know!  

In the next few days I will sit down and post her history.  I will do several posts on everything significant in her life from her very dramatic premature birth to the times we almost lost to her ASD diagnosis to the current situation that is plaguing our household.  

Some people have asked me and mentioned that they would like to put Ella on a prayer chain.  I will not object.  In fact I will be keeping this blog open so if anyone would like to forward it on please feel free to do so.  At this point Ella can use all the help she can possibly get!!!


Much love,