1st Anniversary

I can hardly believe that it has been one year since Eli’s surgery.  In so many ways that time is so fresh and raw in my heart and in my mind, but on the other hand, he has come so far and grown so much!

I have been thinking for awhile that for the first anniversary of his surgery, I really wanted to write out his story in one place, so here goes…

On May 6th, 2008, during my 20 week ultrasound, we found out that there were some problems with our baby boy’s right leg and foot.  We were told that he was missing a bone in his lower right leg and that his right femur was a bit shorter than the left femur.  We were also told that it looked like his right foot was a club foot.  Needless to say, that was probably the darkest moment of my life.  I saw my doctor’s lips moving and somehow comprehended what he said, but it was completely surreal.  The next two weeks were filled with immense sadness, worry and complete and utter heartache.  I began to do research online and was pretty sure that our Eli had fibular hemimelia.  On May 13, 2008, we had a Level 2 ultrasound and that diagnosis was confirmed.

During the rest of my pregnancy I was so fortunate to connect with some amazing women who understood exactly what I was going through and offered support, love and prayer.  I don’t know how I would have gotten through my pregnancy without them.

Then on September 25th, 2008 I received the greatest gift – my beautiful son was born!

In November 2008, Eli had his first appointment with Dr. Woo and then a few weeks later in December, we had an appointment at the Shriners hospital in Tampa, FL.   Both Dr. Woo and the surgeon we saw at Shriners recommended a Symes amputation of Eli’s right foot.  Because Eli was born with no fibula bone in his right leg, he essentially did not have an ankle.  To reconstruct an ankle, and lengthen his right tibia and potentially femur would mean that he would be put through multiple surgeries, spend countless months of his childhood with external fixators lengthening his leg bones, and worst of all, in the end he could potentially end up with a Symes amputation after all.  Even before we had these two appointments, we knew that because Eli did not have a fibula bone that a Symes ampuation would be the best choice for him.  We had talked to many other families and researched the topic extensively. Getting the recommendation from the two surgeons was the final reassurance we needed. 

The next step was to schedule Eli’s surgery.  We decided we wanted to go with Dr. Woo who was in Gainesville, FL right were we lived.  We connected with him right away (he is from Michigan after all) and just knew that he was the man to operate on our baby.  Dr. Woo recommended that we do the surgery between 6-9 months of age – so we scheduled the surgery for May 4th, 2009…Eli was 7 months old.

The day before his surgery I took many, many pictures of him.  I wanted to make sure I had enough pictures for him of the time when he had two feet.

It is still impossible for me to remember the day of Eli’s surgery without being overcome with tremendous sadness.  Jered wrote about it here and to be honest, I still can’t read that whole post.  I do want to try and get out some of my memories though.  I remember waking Eli up very Eli in the morning.  We couldn’t feed him before the surgery and I was so worried about how he was going to do with that.  Also we had to bathe him first thing in a special soap, and I was just imagining him being so upset.  The funny thing is, he was fine – just happy and a little confused.  As we drove to the hospital in the dark, I remember thinking about how bizarre it was that everyone was just going about their day, and here I was taking my baby to get his foot amputated…it just again seemed so surreal.

We got to Shands hospital and I remember looking around at everyone who was having surgery that day, they were all old except for Eli.  Then we were all herded into a packed elevator and headed to the recovery area.  We filled out papers, and waited for what seemed like a long time.  My sweet boy just fell asleep.

Then Dr. Woo’s resident came in and marked Eli’s foot.

Shortly after that the anesthesiologist came over and gave Eli some medicine and then came back awhile later and took my baby away.  I was in a heavy, heavy fog through it all.  We headed downstairs to the waiting room to wait.  I went to the chapel, cried, and waited.  The surgery took a longer than Dr. Woo told us it would take, and apparently it was because it took them quite awhile to get an IV started…because Eli was so “big!”  Dr. Woo called us in the waiting room and told us that everything went great and that the bones in Eli’s right foot were all fused and he was just so glad that we amputated. 

When we got to the recovery room, we immediately heard Eli crying.  When I got to him and held him he stopped crying and took down two small things of formula.  Eli’s foot was gone, but it didn’t matter anymore.  I wanted him to be okay, to not be in pain, the foot seemed so trivial now.

The first 24 hours in the hospital were pretty rough.  Eli seemed to be in pain and just miserable.  He was not eating hardly anything, and when he did eat he would vomit.  This part of the journey really caught me off guard.  Despite all of this, he was discharged the day after his surgery and we were sent home.  Things got worse when we got home.  Eli was so drugged up on his pain meds, barely eating, and had nausea and diarrhea.  We quickly got him some anti-nausea medication, took him off the heavy duty pain meds and just gave him normal Tylenol.  By day five he was doing better.

 

The recovery process was certainly interesting.  Eli’s cast fell off the day before we were scheduled to see Dr. Woo, Dr. Woo then decided to put the cast back on for another two weeks, after the cast came off and we were bandaging the wound, the wound opened up; thus delaying the healing process.  When it was all said and done it took about 3 months for Eli’s wound to heal.  Jered and I learned a lot about wound care, but in the end Eli healed up just fine.

In August, 2009 Eli began the process of getting his first leg made.  It seemed like we had been waiting for this forever and we were so excited!

This phase in the journey turned out to be a bit more complicated than we originally thought.  Since Eli’s leg was a bit “chubby” it was hard for Paul (his Prosthetist) to get a good fit.  The first leg Paul made did not fit right, so we took it home while Paul worked on a new leg.  The first days at home with the leg were bad.  Eli would cry when the leg was on and he would literally become frozen and not move at all.  I feared the worst and was just heartbroken. But sure enough, he started crawling with the leg on. 

On August 24th, 2009 we got Eli’s official first prosthetic leg and his shoes.  Because the length discrepancy between Eli’s right and left legs is not that big, and because the prosthetic foot and leg require a certain amount of height, Eli needs a lift in his left foot to make his two legs the same length.  He’ll probably need the lift until he is about 4 or 5 years old.

Unfortunately, Eli’s first official prosthetic leg never ended up fitting just right, and was constantly falling off, so Paul had to make him yet another one in November 2008.  That leg (the one he is currently wearing) has fit so well, and hardly ever falls off.

 

The day after Christmas, on December 26th 2009 Eli walked for the first time all by himself.

I am pretty certain that that is the very best Christmas gift that I will ever receive.

I know this is the longest post ever, and I am still leaving out so much detail, but that more or less is Eli’s FH story.    I cannot even begin to describe how proud I am of my son and how honored I am that God chose me to be his mom.  He is my love, my life and my greatest treasure.

I still believe with my whole heart that God specifically made Eli this way.  I do not believe that God makes mistakes.  There is a reason that Eli has FH, a purpose.  I may not like it some days, but part of God’s plan for Eli’s life involves him being an amputee.  I am anxious to see his journey unfold and hope and pray that I can prepare him for it as best as I possibly can.