Results!

Hello Everyone!

Summer has finally arrived!  We are really enjoying the warmer temperatures and being able to spend some time outside.  Now that summer is here many of our weekends will be spent at the family lake house in Northern Illinois.  It’s a little over an hour from our house making it a quick getaway for the weekend.  Ryleigh really enjoys the beach and riding in the boat.  This will be Emily’s first year to really experience the sand and the water, so far so good.  I think she’ll like it a little more once the water warms up a bit.

I know that it has been awhile since my last update, so there is lots to share!!!  First and foremost, Emily is doing great!  The recovery from her removal surgery was much easier and quicker than the first surgery.  Her back is all healed and we are doing what we can to minimize the scars.  There has been quite a bit of buildup of the scar tissue so hopefully those areas will be part of a revision in the next surgery.  Here are a few pictures so that you can see the transformation. 

Back

Around the front

As you can see there is still some left to remove.  We’ve been e-mailing with Dr. Bauer recently and he is still thinking that he will be able to remove what is left with an excision.  This is great news!  Originally we were going to wait until the end of the summer to have this procedure done, but with baby #3 due October 8^th we wanted to move it up to ensure that Emily is fully recovered by the time the baby comes along. We were able to schedule the next surgery for August 16^th with a pre-op appointment the day before.  I’m crossing my fingers that this will be the last surgery for Emily.  We have been so fortunate that even with the setback of the giant hole in the first round that Dr. Bauer was able to remove as much as he was.  And of course that Emily has been such a trooper through it all.

Emily is 13 months old today; I can’t believe how quickly the time has gone by!  




Birthday Girl!!!

She is really starting to develop her own personality! She started walking on her own just last week and is very proud of herself. I think she finally got tired of being stuck in one place all the time and wanted to be able to chase after her big sister Ryleigh. 

She is starting to say a few words, the most popular being Bella.  Bella is one of our dogs and she’s not a big fan of kids, so we’re not really sure where Emily’s affinity for her has come from. Nevertheless it is still so cute when she calls out for her!

Hope that everyone is doing well!  Enjoy your summer!

Removal Surgery

Sisters!

Today was another big day in Emily's nevus journey. Her first removal surgery has come 11 days early. The schedule today was a little different than when the expanders were put in. The surgery was scheduled for 1:30pm which was stressful since we couldn't feed Emily in the morning. She ended up eating at 8:00pm the night before and was not a happy camper in the morning not getting a bottle. Luckily we had to take Ryleigh to school in the morning and the car ride helped calm Emily down for a little bit. Overall she did very well for the circumstances.

We arrived at the hospital around noon and were met with a familiarity of having gone through this before. It was comforting to be able focus just on Emily and not worry about things like when do we talk to Dr. Bauer, how long post surgery we have to wait until they allow us to see her, and where we have to go for each step of the process.

No food for 18 hours and still somehow smiling

The surgery took about an hour and 45 minutes which was a little shorter than last time. When Dr. Bauer came out to let us know how it went,  he was very pleased with the results and was confident that we wouldn't need to do another round of expansion. That was great news! Given the problems we had and the last minute schedule change RG and I were not confident that the results would be as good as Dr. Bauer indicated.

Heading back to see Emily after the surgery similar to the first surgery. We could hear her screaming from down the hall. Although it was much more intense last time. We were also more prepared today in that we came armed with a bottle. After not eating for close to 20 hours she made short work of that bottle.  Thankfully that calmed her down quickly and she was able to rest peacefully for about an hour or so before we had to move to the hospital room.



Resting peacefully in the surgery recovery room

The rest of the time was spent in the hospital room letting Emily rest and feeding her.  Thankfully she doesn't seem to be in near as much pain as when the expanders were put in.  She continues to possess remarkable strength and calm throughout this journey.




Ready to go home!

 

Happy New Year!

Goodbye 2012 and Hello 2013! Unlike most people I am not excited for 2013.  Mostly because I know what it brings with it, more surgery.  We were originally scheduled for our removal surgery on January 18th, but things change.  Let me catch you up on the last few weeks. 

December 15th we did fill number 6 bringing us to 425ml is her right expander.  This fill went just as easily as the previous 5 and we had no cause for concern.

 

2012-12-15 - 425 ml

The next week Emily had a low grade fever around 100 degrees and was all out of sorts so we held off on doing her 7th fill.  Rather than try and push it we thought that it would be a good idea to hold off on her next fill until after Christmas and all the excitement and commotion had died down. 

Merry Christmas!

After Christmas we noticed that Emily's good expander was looking a little bit red so we took some pictures of the expander and her ever growing hole to send to Dr.Bauer.  We were surprised when we heard back from Dr.Bauer's nurses and they wanted to see us in the office on Friday. With the upcoming holiday weekend they wanted to remove her expander to avoid the chance of it falling out on its own.
 



Ryleigh referred to Emily's hole as her "Fish" due to its resemblance
to Ryleigh's toy x-ray fish when it was smaller.

So Friday morning off we went to Dr.Bauer's office.  Dr.Bauer was in surgery so we met with his nurses and Dr.Dickie.  It took them less than 5 minutes to pull the expander through the hole and snip the tube.  The port will stay until they do the removal surgery.  The nurse dressed the hole with gauze and some tegaderm.  She said to expect some increased drainage for the next few days but that it would eventually slow down.  The hole is definitely not a pretty site, but they said that it would start to shrink pretty quickly. 

After a few pictures we were on our way.  I got an e-mail from Dr. Bauer later that day after he'd had a chance to look at the pictures to say how good the other expander was looking.  He said that we could proceed with filling the good expander, just not to try and push it.
 

Sunday is our normal fill day so we started to get all of our supplies out to prepare for Emily's fill.  When I took her PJ's off to apply the lidocane I noticed that the color of her good expander was once again off :(  This time her skin on the expander almost looked as though it were bruised.  She didn't have a fever and the expander was not warm to the touch so I didn't think it was infected.  Once again we delayed our fill and sent a couple of pictures to Dr.Bauer.  He wrote back and asked for some additional pictures.  It wasn't long after we sent the second round of pictures that we heard back from Dr.Bauer saying that the change in color wasn't a big deal but he would like us to move up our surgery date.  He said that he would like to get her in as soon as possible and would have his assistant check the calendar.

We heard from Dr.Bauer's assistant on Wednesday of this week.  She said that they had had a cancellation for Monday so we were added to the schedule.  Now we just had to get Emily a pre-surgery physical and we would be ready to go.  Normally this wouldn't be an issue but Emily picked up some sort of bug and spent New Year's Day throwing up. She was starting to do a little bit better by Wednesday, but was still out of it and the only time our pediatrician could get her in was Thursday afternoon. I was definitely concerned that she would fail the physical and be unable to have surgery on Monday.  Fortunately she was in good spirits and well enough that the doctor gave her a good bill of health, approving us for surgery.  This winter has been horrible when it comes to illnesses in our house.  I feel like we aren't even getting over one before the next one hits.  I guess that is what you get when you have a 3 year old in pre-school!

We got the call from Highland Park Hospital last night informing us that Emily's surgery would be at 1:30pm and that we would need to be at the hospital at 12:00.  The kicker is that we can't feed her anything after midnight on Sunday.  She is going to be one unhappy baby by the time 1:30 rolls around!  I am definitely not looking forward to Monday. 

While he doesn't think that he will be able to get all of her nevus with this one surgery, he is very optimistic that we will not have to go through another round of expansion.  He is hopeful that he will be able to get enough of the nevus with the new skin that we have and will be able to get rid of anything that is left with an excision later on.  I'm anxious to see the results from this surgery, but I'm not going to get my hopes up that this will be it.  I pray that this is the only round that we will have to go through, but I'm trying to be realistic so that if it's not I'm not let down.  It would have been ideal to have been able to fill both expanders for the full 10 weeks, but things happen.  I have to be thankful that we were able to make it this far with the one expander and that we have the best, most capable doctor when it comes to this surgery. 

Please keep us in your thoughts and prayers over the next few weeks.

Amy & RG