Tuesday, December 16, 2008

Craniofacial team appointment

Well..where to begin? Julia had her first craniofacial team meeting today and Lee and I think it went pretty well. Dr. van Aalst, her plastic surgeon, is very pleased with how her lip is healing and so are we. He spoke with us about her upcoming palate surgery and what to expect. She will be in the hospital for atleast one night and will keep those wonderful "no-no's" on for 2 weeks!!! The recovery for the surgery is going to be a challenge for a 10 month old. No bottles and she can't have anything thicker than stage 2 baby food for a month. Oh well..... we will deal with it! Next we spoke with a social worker and she was wonderful. She gave us some wonderful information to help us get Julia off of the bottle before her palate surgery, which she must be off or the surgery will not happen. Then we saw speech and they said they would re-evaluate her after her surgery to see what type of therapy she will need. We also saw an oral maxillofacial surgeon and we will not need a bone graph until she is around 6 years of age. She saw a pediatric dentist and they just looked in her mouth.....they didn't say much. We also met with ENT and went over her recent ear infections and we all agreed that she needs tubes. They will put those in when she has her palate surgery in Feb. The doctor informed us that she may need 2 or 3 sets of tubes, we will just have to wait and see. We are all a little tired, but I think she did GREAT! We will keep you updated on her progress. Happy Holidays!

Thursday, October 30, 2008

Just a few pictures of Julia and her brothers!

We have had a lot of first over the last month!  Julia is a mover!!! If she wants to get somewhere she just rolls until she gets there.  She has started to enjoy baby food... as you can see probably too much.  She weighed 20 pounds about 2 weeks ago... she is healthy.  She had her picture taken with her first pumpkin, had to wear a hat because it was cold, and has gone to her first UNC Tarheel game!!  We kinda like UNC.... that is where she has her surgeries.  Until next time....

Thursday, September 25, 2008

Is she cute or what?

Julia had her one month follow up appointment with her surgeon today and I think it went pretty good.  We are to start massaging the lip 5 times a day to help with the scar.  And as you can imagine, she is not to fond of it.  Dr. van Aalst looked in her mouth again today and I could actually see the cleft in her palate.  The palate is open with a thin layer that is covering the opening in her palate.  So, we are a go for Feb 18 for her palate surgery.  It was an up down day with emotions.  I was excited to hear that her lip looks exactly what the doctor expected, but then went down hill talking about another surgery in Feb and possibly another one when she is 4 ( a lip revision) and then her bone graft when she is 6 or so.  4 surgeries before she is 7 years old! That is just a little hard to swallow today.  But then you look at her and just smile:)  She is gift to us from God and I thank Him everyday for all of my blessings... Lee, Connor, Zachary, and Julia. Until next time...  

Tuesday, September 16, 2008

Everyday is something new....

In the past week Miss Julia has decided to laugh out loud and roll over.  It is so exhausting learning all of these new things.  She is changing so much everyday and I still look at her in amazement that she is mine.  She smiles all of the time, but she smiles the most at her big brothers!!  I am including two pics from before and after her surgery so everyone can really see the difference since her surgery.  Take care and until next time...

Saturday, September 6, 2008

New and exciting things!!!

Julia had her 4 month check up Friday and little Miss is 16lbs and 24.5 inches long.  I guess "little" is not the word to use.  The doctor said we could start some solids, so we tried green beans, which she loved.  Next we tried applesauce which was a NO WAY!!  Maybe she will be my good eater-
Until next time.....

Tuesday, August 26, 2008

Julia's beautiful smile!!

We went back to our plastic surgeon today and they removed the stents in Julia's nose and took off the steri-strips.  It is like seeing your newborn all over again!  The emotions are CRAZY!  You know that this is your daughter, but it doesn't look like your daughter, at least not the one you brought home from the hospital.  The most difficult part of the past week was her "no,no's" she had to wear on her arms so she would not touch her face.  She hated them!!!!   She has started drinking from a regular bottle, which is pretty cool.  It feels weird now because we worked up to this day that we waited for since the day she was born and now it's over.  That is it.... the doctors have repaired her lip and nose and that is it.  It is just weird, I can't really explain it.  I guess we just love her and kiss her and spoil her until her next surgery which they have scheduled for February 18th, if they decide she needs it. We will find out for sure on December 16th at our Craniofacial Team Meeting.  Until next time:)

Wednesday, August 20, 2008

We are home-

We brought Julia home yesterday morning.  She did very well in the hospital with eating and pain control.  She slept most of the day yesterday and didn't eat all that much.  She struggled this morning to eat again, so we are going to have to watch her with that.  Otherwise, we are very pleased with the results of the surgery.  She is still pretty swollen around her nose, but it looks amazing.  The doctor came by before we left the hospital and changed her bandage on her lip and it looks incredible!!  It is unbelievable what these doctors can do.  I truly believe that their hands are guided by God.  We go back next week to get the stitches out, stent out of her nose, and she can take those horrible "no, no's" off of her arms.  I will keep everyone updated.  Thanks to everyone!

Monday, August 18, 2008

It is finally over!!

I can't believe I am sitting here watching my angel sleep after her operation.  She looks amazing!  She has woken up once and drank 5 oz of pedialyte in record time and is now back to sleep.  I guess I need to enjoy the peace and quite now, because I am sure she is going to be a bear when she finally wakes up.  Thanks to everyone for their thoughts and prayers.

Tuesday, August 12, 2008

Less than a week a way!!

Wow, it is amazing how your nerves can get to you.  I know Julia can tell when I am stressed, but I sure hope she can't feel that I am scared out of my mind for her.  I guess as parents this is part of who we are.  She is sleeping so peaceful in her swing, while I am here typing and feeling like at any moment I could vomit!!!  I know we are doing this to help her, but it sure doesn't feel like that right now.  I just thought I would put this out there and I am sure there will be more to come over the next several days.  I will be posting the day of her surgery... I call that my therapy.  Take care-

Friday, August 8, 2008

Genetic Appointment

Well, we had our appointment with the Genetic Doctor at UNC this week.  I knew it would be a long appointment, so I had to plan for Julia while we were there.  The appointment took about an hour and a half.  We covered everything from what I took during pregnancy to the family tree.  Anyway, the biggest thing about the appointment is the doctor feels that Julia does have a "cleft palate".  What she possibly has is actually called a submucous cleft palate.  I really don't know how to explain it, but when you look in her mouth she does not have an open palate you can see, it is under the tissue in the roof of her mouth.  We will know more when she has her lip repair on the 18th of August. If you want to know more you can go to this website  http://www.cleftline.org/publications/submucous  
I will keep everyone updated.  Take care-

Thursday, July 31, 2008

ENT Appointment

We had Julia's ENT appointment last week and they said she does not need tubes at this time.  One less thing to worry about with her surgery fast approaching.  I can't believe it is only 2 weeks away!  

Friday, July 11, 2008

First Vacation with Julia

We headed off to Charleston, SC during the week of July 4th for a week vacation.  It was Julia's first time to the beach ( in the evening).  The temperature was perfect and the weather was beautiful.  It was nice to get away considering next week we have appointments every week until her surgery and the boys start back to school on July 28th.  Her surgery is fast approaching and I am starting to get nervous.  I know it is the best thing for her, but I also know that it is going to be a tough couple of weeks post surgery.  We have an appointment with ENT in two weeks to see if she is going to need tubes during her lip repair.  This is pretty normal for a child with a cleft lip/cleft palate.  I will keep everyone updated.  

Friday, June 27, 2008

We Have A Date!!!!!!!

I am happy to say that I was told today by UNC that Julia will have her surgery on the 18th of August.  I cried when I found out.  Partly because I was excited for her to have this done and then on the other hand...... my daughter is going to have SURGERY!  I know that they will take good care of her, but I am mom and I worry.  I will keep everyone updated on how this will all work later.

Wednesday, June 18, 2008

Still waiting........

I must say that I am getting a little impatient waiting for a surgery date for Julia.  I realize that her cleft lip is not that bad and it is not really interfering with her feedings, well except for the reflux and gas. We have her 2 month check up on the 23rd, so we will see how big she is getting. We have so much going on from Connor's graduation from 5th grade to Zachary's end of the year party and how can I forget Julia's baptism this weekend!  For those of you that are not from around here, the boys are in a year round school.  It is the greatest!!  Anyway, I will post the date for her surgery as soon as I hear something.  Keep your fingers crossed that we hear something this week.  

Thursday, June 5, 2008

Still waiting to hear from UNC on Julia's surgery date. We tried to keep busy today taking pictures. We have to do something since she does not sleep during the day!! Until next time-

Wednesday, June 4, 2008

Julia Grace Usher

As most of you know Julia was born with a Cleft lip.  We were all surprised at her birth, including my doctor, Dr. Brannon.  Like Dr. B said when she was born... "She is perfect".  And yes she is.. just the way she is!  She is scheduled to have surgery this summer and hopefully they will be able to take care of it in one surgery.  She has had some struggles with eating and it has been a challenge, but she is so worth it!!
I heard from UNC today and hopefully we will hear when her surgery will be by the end of the week.  They said it could be as early as next month.  How exciting is that!!  I am really getting used to her "gummy" smile!  Connor even said the other night that he can't see her any other way.  I met a wonderful person today at my 6 week follow up with Dr. Brannon, who has a child that was born with a cleft lip/cleft palate.  It made me feel like I was not alone.  I am very lucky to have the support of our family and friends.  I will keep everyone updated on a surgery date when I find out more.