Taking A Break

After visiting with Jordan's doctor yesterday, we told him that we all needed a break.  He completely understood.  He said that we could wait as long as we needed and that he would continue when ever we were ready.  He thought that waiting a year or even two would be fine.  The down side of waiting is that as she grows, her nose will start looking more and more deformed because of the lack of support from the inside.  We may run into complications with rebuilding her nose too.

We discussed lots of things that happened through this entire process.  Dr. Harshbarger told us that if we have lost the confidence in him, that he would refer us to someone else.  I told him that at this point, I do not have confidence in anyone.  He understood that too.  Shannon and I will have to make some more big decisions in the future (which I do not look forward to).

Jordan's nose has healed and looks pretty good.  It is just collapsed down again like when we started.  Jordan's forehead is healing really well too.  Dr. Harshbarger said we may be surprised at how it will look after it heals.

I am still really numb from this.  I don't want her to have to do another surgery ever  but unfortunately she will.

Keeping the Faith

This is what I learned in church today.

The one who conquers will have this heritage, and I will be his God and he will be my son. Revelations 21:7

I am going to keep the faith.  God has this storm in His hands.  Even though I was knocked down, I will not let the devil  win!!!  Jesus I love you!!!!

????????

I don't even know what to title this post!

After the skin graft, I cleaned and took care of Jordan's nose like they told me to do.  Dr.  Harshbarger told us that the skin graft would be white for about three days.  It would then turn purple and slowly turn to pink.  I watched for it to turn purple but that never happened.  Her forehead was glued together, and we were to leave it alone and the glue would fall off slowly.   Last Sunday, I saw a little puss coming out at the top of her forehead from under the glue.  Monday I took her to Austin to have it looked at.  Dr. Harshbarger was out of town (which we knew about), so we saw a Physician's Assistant.  She said that the skin graft looked pink to her and maybe we missed seeing the purple stage.  She said that she did not see any puss and that maybe I saw glue on her hair.  She said to keep the appointment on Wednesday for possible suture removal.   We also discussed Jordan going under light sedation for this, since she doesn't like anyone touching her nose and she now fights to have it looked at.  So we went home feeling pretty good.  When I cleaned her nose that night,  I noticed that the skin graft was not attached to the bottom part of her nose.  I couldn't remember if this was normal or not.  I tried to stay positive.

I expected Wednesday's appointment to be a quick visit.  Shannon decided to stay at work because they weren't going to do much.  The plan was to look at her nose and set up a time for the stitches to come out.  Of course, I still had concerns about the glue and if that was infected on her forehead.  Jordan started complaining that her nose was hurting and that she smelled that yellow stuff in her nose.  Jordan and I left early on Wednesday and did a little shopping.  When we got to Austin, her nose was bleeding a little and I smelled something.  I thought it was her forehead.  At the doctor's office, they still did not think her forehead was infected and said that her skin does not heal like other children.  They said that is why the glue looked like it did.  I had to hold Jordan down while they looked in her nose.  I took a quick look and knew it was infected and that the skin graft didn't take.  She said that it did come undone at the bottom and the smell was coming from her nose.  I then shut my eyes and rested my head on Jordan's belly until the exam was over.  I picked her up and we both cried together.  Of course, Jordan pulled away from me and looked at me like I was crazy.  It was really cute.  The team came in to set up a procedure to clean her nose and to see if any part of the graft could be saved.

On Thursday, my mom and I took Jordan back to Dell.  When we woke her up that morning, she had dried puss splattered across her forehead.   I knew then that her forehead was really infected.  So Dr. Combs cleaned out her nose.  He said that the skin did not survive and that is probably what we were smelling. The skin graft was completely removed from her nose.  He removed the glue from her infected forehead and debrided  the area at the very top closes to her hairline.  This was the same spot I saw the puss on Sunday.  We had to stay the night to learn how to do wound care for both places.

I am now numb to what happened in the last four weeks.  Her nose is collapsed again, and now she has a big gash on her head that will need reconstructive surgery in the future.  I have watched this child's lip fade away when she was a baby.  I have now seen her nose collapse twice and I just watched part of her forehead fade away.  It is really hard to stay positive right now.  I feel God's presence but don't understand His master plan.    

Piggy has been with Jordan through all of this.  

A New Plan for Jordan

So much has happened since the last post.  We were praying for the blood supply to return to the original flap.  It started looking a little better and I was getting my hopes up.  When we went to see Dr. Harshbarger, he did not think he would be able to use the original flap.  The part that lost the blood supply was not healing fast enough.  He said that even if it heals more, the tissue would probably not be healthy enough to create a new nose.  He discussed several options with us.  He was leaning towards removing the old flap completely, stitching that side up, and creating a new flap on the other side of her forehead.  Shannon and I were both disappointed.

Then they had to remove the gauze in her nose and some stitches from her head.  That child is so brave.  The gauze was stitched to the skin graft and when they pulled that out, we all knew it hurt her.  She never fought them though, and I tried to hold her tight so she wouldn't be afraid.  That was a very tough "mommy moment" for me.   The stitches in her head came out fairly easy.  After we left, Shannon and I agreed to go ahead with Dr. Harshbarger's plan.  We were both ready for this to be over with.

After her appointment, the part that lost the blood supply was looking worse every day.  On Saturday night part of the flap split open.  I called Dr. Harshbarger on Sunday and he wasn't too concerned as long as the bleeding was under control.

Tuesday rolled around and we were off again to have her surgery.  We checked in, they called us back and we were preparing for another flap to be done.  When Dr. Harshbarger came in, he said he had a different idea.  He said this idea came to him at home and that it was worth a try. Before he could get another word out, I almost fell out of my seat and I started praising God for sending him a new plan.  Then I listened with tears in my eyes because what he was saying was so much better.  He said that we could use part of the old flap to do a composite skin graft.  Which means, he would take the skin and fat from the healthy part of the original flap and put it in her nose.  He said it would not have a blood supply but there is a chance that this could work because it is such a small area.  He is not a 100% sure this will work and doesn't know if this will be a long term fix for her, but it sounded great to me.  Shannon had some questions for him, but we both agreed we should try to use what was there before he starts cutting on the other side of her head to make a new flap.  We have had to make some pretty hard decisions for her, but I know they are all the right ones (because God had His hand in this).

Jordan made it through the surgery.  She looks so much better but her mood was a different story.  She did not have her spunk anymore.  When she woke up, she stared right through me and didn't want to smile.  She had enough!!!  She was  not in any pain but was just a different child than before.  She stayed in that mood until this morning.  We are at home and we are all better.

Our prayers now are that the skin graft takes.  If it does, Dr. Harshbarger will put cartilage in her nose in about three to four weeks.  It has been a long two weeks.  Thanks to all of you that prayed for my family and most of all for Jordan.  God does listen.

May 24, 2013

First Flap Part 1 Surgery

May 25, 2013

Flap back on Forehead

The purple part is where the blood supply was congested.  

This part was in the tip of her nose.

June 4, 2013

Composite Skin Graft from Original Flap

My Super Sweet Boy

He has been moved around a lot but loving every minute.

Surgery Part 1

On May 24 we were at the hospital by 8:00.  They prepped Jordan for her surgery, gave her some happy medicine and off she went.  My nerves were running on high.  While we were waiting, I kept praying.  The surgery started at about 10:30.  About an hour later, the fire alarm started going off.  I went into a little bit of a panic wanting to go back and get Jordan.  They told us they would let us know if we needed to evacuate but no one seemed worried.  Eventually the alarm stopped, and I got a call that Jordan was doing great but still in surgery.  About thirty minutes after the call, her doctor came to talk to us.  He said that the flap was in place but he was a little concerned that the end wasn't getting enough blood flow.  They were going to watch her for a while.  If they felt the blood supply wasn't good, they were going to snip a few stitches.  Around 1:00 they were ready for us to see her in recovery.  They felt that the flap was getting what it needed and did not have to snip any stitches.

When I saw Jordan, I was expecting her to be grouchy.  She was calm, and I even got a smile out of her.  The flap was nothing like I expected.  I can't even describe what it looked like.  It wasn't pretty.  God gave me the strength though to keep my cool and focus on my princess.  We got Jordan to her hospital room and settled in.  You could tell when she needed pain meds, because she began to get real restless.  The night was long.  They gave her antibiotics, and steroids through her IV off and on all night.  Her blood pressure was low, so they had to put her back on the IV.  Mom and I were up almost all night with her.

Then morning hit.  I noticed that her flap was getting dark and asked the nurse if that was normal.  She called the doctor and they arrived by 7:30.  From 5:30- 7:30 Mom and I slept.  The doctor came in and said that the flap was congested and the only way to try and save it was to go back to surgery and put it back on her forehead.  I thought I was going to pass out.  

Within thirty minutes Jordan was in surgery again.  After surgery, she was grouchy and I don't blame her. So the flap went back on her head and they took a skin graft from her groin to prop her nose open for now.  We go back to her doctor on Thursday to see what he will do.  We are all hoping that the blood supply returns to the part that was congested.  So, right now there are a lot of "IF's" (which I hate).  

My prayer for Jordan is that the blood supply returns we can start over again with the same flap.  Jordan is in good spirits.  She listens and is super careful with her head.  I can't wait to see her when this is done and she is healed.  She is amazing!!!

For we live by faith, not by sight  2Corinthians 5:7

Jordan's Nose Before Surgery

We took Jordan to her pre-op appointment on Friday.  I finally understand what they are going to do (not that I like it).  They will make two incisions down her forehead to make a flap of skin.  They flip the flap over and connect it to the tip of her nose.  The flap will stay connected to a blood vessel from her forehead for several weeks.  The opening on her forehead will be closed with stitches.  She will have those removed a week after surgery.  I am a bit confused when they will put the cartilage in her nose.  It will probably be on the second part.  Many of my questions were answered on Friday.  I also have realized this has to be done.    As she grows, her nose will look more sunk in since there is no cartilage support.  Here is what her nose looks like now.  I so wish that I could do this for her.  Please pray for all of us.  I am trying to get control over my anxiety before next Friday.  For we live by faith, not by sight  2Corinthians 5:7

 

Zoo Trip

We had a great time at the zoo.  It was a beautiful day.

Train Station in Temple 

Mother's Day 2013

I think this may be my favorite day.  I really do enjoy Mother's Day.  It gives me another chance to thank God for allowing me to raise two of His children.  I love being a mother to Jordan and Winston.  When it gets difficult (because sometimes it does), I remind myself of the precious gifts they are.  These are two of my favorite memories this year.  I was exhausted one night and the kids were snuggled up with me.  Jordan talks a lot all the time.  I was getting frustrated that they were not sleeping yet, and the last thing Jordan said before she crashed was, "Mommy, I love you!"  It melted my heart.  Now as for my son.  He is normally a pretty good boy.  When he has an off week (or two or three), he can wear me down. Well when I just about have had enough of his behavior, he runs into the yard and picks me several flowers.  What a sweet boy!!!  Then he wrinkles his little nose and gives me the cutest grin.  How could I ever stay mad at that?  These are just a few of the joys I have as a mother.  

Sprinkler Time

Surgery Scheduled

April was a very hard month for me at work.  While juggling work with kids, somewhere in the middle of all of that, Jordan's nose surgery was scheduled. She will be having part one on May 24.  I will never understand why work had to be so mentally draining this past month, but I can't help but think that God needed my brain to be busy so that I would not have time to think about what is to come.  I do have peace knowing that this is something that needs to be done and now is the time.  Jordan has been asking me some pretty tough questions about her face lately, and I depended on God to help me say the right things.

Jordan and Winston are so ready for the summer and can't wait to go swimming.  Jordan won't be able to swim much but may get to splash some from time to time.  The weekend before her surgery we are taking the kids to Waco.  They are so excited about that.  Since we won't be able to do a lot this summer, we will go to our favorite zoo and swim at the hotel.  Hopefully school will be better these last few weeks and I can keep the blog up-to-date.  

Happy Easter

Next Step for Jordan

At the end of spring break I took Jordan to her plastic surgeon.  He said we can go ahead and schedule her nose surgery.  It will be a three step process.  We are hoping to start the first step at the end of May.  The first surgery will require her to stay over night.  She will have to come back three to four weeks later for the next part and possibly stay that night.  Three to four weeks after that, they hope to touch up and release her the same day. She will be put under each time.

I have been on edge since that visit.  I have many concerns, but my biggest is the scar they will leave on her forehead to fix her nose.  It will go from her hairline to her eyebrow.  Her face looks so good now and she has come so far.  I hate that she will have another battle scar the rest of her life.  I struggled with this all week, prayed a lot, and know that this is going to all be okay.  She is in God's hands and it is better to do it now than to wait.  My prayer right now is to guide the doctors to make the best decisions for my child.  She is so strong, and I am so proud of her.  Please keep her in your prayers.

Spring Break

We took the kids to San Antonio over spring break and had a fantastic time.  The zoo was very crowded and a little disappointing, but it was a beautiful day and the kids were happy.  The next day we went to Sea World.  We all had a better experience there.  The kids were not too impressed with the Alamo yet but loved going on a carriage ride.  Jordan kept saying she felt like a princess.  I held back tears the whole trip and thanked God for giving me a chance to take my family on vacation.  They are three and a half now and I still can't believe they are mine.  What a blessing they are.

My Princess

Jordan was asked to be in a wedding.  She talked about it for months.  She was a princess.  I didn't think she would walk but she did great.  Winston loved dancing that night and neither one of them wanted to go home. Jordan wanted to sleep in her dress.  

Odds and Ins

Our computer was being repaired, and it is finally up and running again.  My work has been extremely demanding the past two months, so I haven't even taken a lot of pictures of the kids.  They are doing well.

Happy New Year

Opening Presents

Winston just ripped into  his presents.  Jordan had to stack them up, pick the right one, open it, and stack it again on the other side of her.  Winston was done before she opened her second one.

Making Cookies for Santa

Santa

The kids finally got to see Santa.  Last weekend we took them the see The Lane of Lights in Ledbetter.  They loved the lights.  I thought Jordan would not sit on Santa's lap, but she did great.  Winston was not at all scared.  We had hot chocolate and cookies.  These will be great memories for me.