Tuesday, August 30, 2011

Upcoming heart surgery

We received the call we have been waiting for... Isabelle's heart surgery is scheduled for September 28th. We will be heading down to Orlando on the 25th so we can arrive bright and early for her pre-op and echo cardiogram on the 26th. Hopefully, we will get a tour and meet everyone so my fears can be eased a bit. I am having mixed emotions about the surgery. I am excited for her heart to get fixed so she doesn't get tired so easily. She is doing amazingly well and progressing daily but I can tell she gets worn out easily. But... I am a born worrier. I try to lay my worries down but I end up picking them right back up. This is a problem I have always dealt with and going through such a huge surgery, it is a bit overwhelming. I thought that my pregnancy was the hardest thing I had ever gone through (and it was at the time) but heart surgery is now quickly stepping into 1st place. I can’t grasp the thought of handing my baby over to a doctor in order for him to open her chest and repair her heart.
Somedays, I am holding myself together by a very thin thread. It seems like even the smallest tasks are beginning to takes its toll. I got choked up when I had to talk to the receptionist at the doctor’s office (I am sure she is used to that) and when my family was discussing hotel arrangements and I appologize now if you happen to be the person who just simply asks – “how are you doing?” You may end up with a Mommy whose tears won’t stop. I know we will all get through this but it is a very stressful time.
 Today, Isabelle had a follow up cardiology appointment.  We found out that she has lost a few ounces and is down to 10lbs 5ozs.  She is still growing though- she is now 22 3/4 in. long.  The doctor wasn't too happy with her weight and she felt that her liver was a little enlarged.  So, she decided it was time for Isabelle to be on a diuretic.  She will take this each morning and this should help prevent the fluid from building up in her lungs and keep the pulmonary pressure down.   Also, this should help her to not have to work so hard to breathe and eat.   
We have a lot of prayer and support from friends and family and that means so much to us.  Keep the prayers coming as we prepare for Isabelle's broken heart to be fixed.

*All pictures were taken by Robin Tutwiller Photography

Monday, August 29, 2011

Our little soccer champ

I guess he is trying out a new look with his hair
Aiden started soccer practice tonight.  It is finally his turn to get out on the field and show us what he can do.  No more standing on the side lines watching his brother wishing he could run the fields. 
Aiden has a big year ahead of him... soccer, Kindergarten and who knows what else he will accomplish.  Don't worry, I will be sure to document it all!

Weekend wrap up...

What a weekend!
Friday morning, Mr. Brodie decided to run away from home and go on a little adventure.  He was missing for a day and a half and he is very old and not supposed to go on walks in the heat so with that combination, we weren't sure if we would see him again.  The boys didn't quite understand that he was really gone until late Friday night when he didn't come home.  Aiden was very worried about him being in the wild all by himself and Ethan was worried about his Daddy.  He didn't like seeing his Daddy sad.
Luckily, Saturday afternoon, Daddy found him about 3 miles from our house.   The boys were so excited he decided to come home.

Mr. Brodie had to rest up from his long adventure!

Saturday, the boys and I headed to Big Kahunas for the first and only time this season.  The water park was an every weekend occurrence last summer but with baby Isabelle, that was impossible.  So, the boys were very quick to pack their sister up and send her to Nana's for the day.  We enjoyed some Mommy- son time.
Then we headed to Ian's 4th birthday party for some more swimming and kabobs.  He is the first kid I have met that requests kabobs and cheese puffs for his birthday dinner.  But it worked!
Can you tell the theme?? Kung Fu Panda... Birthday boy-Ian, Ethan and Aiden
Even Daddy and Isabelle got into the spirit.

   Then Sunday, we headed to church.
Isabelle Claire 
After this weekend, Isabelle was ready for a good night's sleep.
and this is what we woke up to this morning... rough night sleep Isabelle??

Monday, August 22, 2011

Poor Isabelle...

Isabelle has not been feeling well the last few days.  She is very congested and has a horrible cough.  This is the first time that she has been sick.  We have been blessed that she has been so healthy especially going to daycare.  I was hoping she would hold off on getting sick at least until after her heart surgery.  We still need her to gain weight in order for the surgery to get scheduled so hopefully she will get over this quickly. 
We have defnitely been spoiled since she has slept through the night since she came home from the hospital.  Last night, she was up every couple of hours with a major coughing fit.  So today, I have toothpicks in my eyes so I can make it through the day.

Isabelle sleeping in her bouncy chair to get a little relief. 
Thankfully, we were able to get her in to see her doctor this afternoon.  I am still waiting to hear the final results.  I do know that she has gained a little weight since her last appointment.  So we are moving the in the right direction.  She is currently 10lbs 9 ozs.   I pray the doctor can give her something to help with the congestion and cough so she is back to her happy little self.

I got the final word from Daddy, Isabelle has the beginnings of an ear infection.  The boy's didn't have ear infections when they were younger so this is all new to me but it makes sense now.  She is such a easy going baby and the last couple of days, she would start screaming one minute and then the next moment she was happy again.  Glad to know she wasn't just being sassy. 
The doctor said that he is going to be extra cautious and put her on medication because she doesn't need to have any infections in her body since she has a heart defect.  Plus he also mentioned that children with DS tend to have more ear infections so we now know to watch for this.  Time to stop by the pharmacy to get her medicine started and praying for a quick recovery.

First day of school 2011

Ethan- 2nd grade/ Aiden- Kindergarten
 The boys had a mixture of excitement and nerves this morning.  At first, Ethan told me I couldn't walk him into class but then he decided at the last minute that I could.  I am not ready for the year to come where my boys are embarrassed to be seen with me.  Maybe we have a few more years before I have to worry about that.  Aiden was not himself this morning.  He was so nervous.  I am used to him talking non-stop and smiling from ear to ear.  You can tell in his pictures, he is nervous. 
I am thankful that Aiden didn't have an allergic reaction going into the school like he did during the Orientation. 
I have been thinking about them all day and I can't wait to hear how their first day of school went. 
Ethan- 2nd grade

Aiden- Kindergarten

Isabelle reporting for duty...

This is what I came home to on Friday.  The boys (with a little help from Daddy) put Isabelle in a build a bear outfit.  She doesn't look too pleased with them!

Thursday, August 18, 2011

School Orientation

The Holt family had a very busy morning.  We dropped Isabelle and Ethan off at daycare just in time to get Aiden to his kindergarten orientation.  As soon as we walked in the building, Aiden started coughing...the cough.  Uh Oh!!  Anyone who knows Aiden, knows that this could be a sign of his allergies.  But, he stopped before we made it to his class so all was forgotten and we went about our morning.  The parents stayed in the class to learn about the school year while the kids went on a tour of the school.  Aiden was very excited but I could tell he was nervous as well (he just didn't want to admit it).  When he returned, he was extra quiet and then we noticed he had hives on his face.  What?!?  Is Aiden allergic to school??  This reaction stumps us because we know he didn't eat anything so what could be in the air that is causing the hives?
We were actually surprised when the teacher asked which kids had allergies and we were the only ones to raise our hands.  Allergies are much more common these days so I thought there might be at least one other kid.  Nope... just Aiden.  I didn't want to scare the teacher during our first meeting with all of his allergies and what he does when he has a reaction but this Mommy is a little worried now.  So I did what I do best and sent an email to explain what she might expect.  If Ryan knew, he would think I am crazy for emailing already especially since school hasn't even started but I have to make sure Aiden will be ok.  My worst fear (and probably Aiden's) is that he will get sick in the classroom and then the kids are mean to him. 
After his orientation, we stopped by the nurse's office to introduce her to her new little friend and to pick up all of his medication forms he might need.
So, next stop was to the grocery store to pick up some Benedryl then back to daycare to switch kids. 
Next is Ethan's turn.  He is going into the 2nd grade so he wasn't as excited as Aiden.  He knows school ='s homework.  We go to the wall and search for his name and sure enough, he is in a portable.  Mommy is not happy but Ethan thinks it is the coolest thing ever.  So I pouted for a few minutes and then got over it.  If he is happy then I am happy. 
On a quick side note, as we were walking through the cafeteria to get to the portables, 2 girls came running and screaming up to Ethan and gave him a huge hug and then started talking to him while twisting their hair around their little finger(What?!?).  I felt the need to question their every move- find out their full names, parent's names and life history but I didn't want to embarrass him anymore than he already was.  Boy, they start young these days!
So, both boys were returned to daycare, peeked through the window- Isabelle was sound asleep and then I was off to work.
We better get used to days like today.  School, homework and soccer season are all about to begin.  Fun Times!

Tuesday, August 9, 2011

What a night!!

Have you ever had one of these kinds of nights?!?

Clothes in the fan, dinner all over the floor and a wonderful gift left by a dog?!?  And that happened all within the first 30 minutes we arrived at the house.  Later in the night, Brodie -Ryan's dog :) decided he wanted to take a stroll in the neighborhood for a while (unattended).  About an hour later he decided he would grace us with his presence panting for some air conditioning and water.
And the night had obviously worn Isabelle out.  She had had enough!
I am sure I looked like this by the end of the night as well, but I just didn't have anyone over me taking pictures. 

Update from Cardiology appointment

Mommy, what did they do to me?!?  (This was right after her EKG so her skin is irritated)
 Isabelle went for her last echogram and EKG before her heart surgery.  She enjoyed listening to a little Baby Einstein during her testing.  Her favorite song was by Mozart (she told me so). 
She is currently weighing in at 10lbs 2 ozs and is 22 1/2 in. long.  She needs to be around 5 kilos (which translates to approx. 11lbs 2 ozs) before she is ready for the surgery so we are now looking at the end of September for her OHS.  She is doing great and she will have one more checkup in Pensacola at the end of this month.  The physicians in Orlando should be discussing her case this week or next so we look forward to hearing from them soon.

Friday, August 5, 2011

We are ok

I think I am finally coming to terms with Isabelle and Down Syndrome. I know that sounds crazy but it just hit me. It only took me 5 months during the pregnancy and then 2 months after her birth but I think I am finally coming to terms. There are still a lot of unknowns that we will face but I now wonder if a lot of my worries were not only for her but for myself.  Not knowing what the future holds for her effects our entire family.  Down the road, when kids are grown and out of the house, most people go through the empty nest stage.  We might not experience that and I wonder now if I was being selfish. 
I began to realize that when people would ask me questions or when I was talking about Isabelle, I always would throw a “but” into the conversation. But- she seems to be doing great, But- maybe it is just a mild case, But- she really doesn’t look like she has DS. All of these “buts” could very well be true because she is doing great and she has amazed all of her doctors up to this point. However, it doesn’t change the fact that she does have DS and that is ok. She can have DS and still achieve everything she is meant to do. Having DS doesn’t change the fact that Isabelle is special, beautiful and perfect.
In the past, I have had a rough time accepting compliments with Isabelle.  I would get upset if I felt someone was looking just a little too long at her.  But now I know that they are looking a little longer because she is  beautiful.  I won't be ashamed that my daughter has Down Syndrome. 
Just in these few short months, Isabelle has changed my life. I can't imagine my life without her just the way she is. She has just now started smiling and she lights up my world. Isabelle isn't suffering and for that we are so thankful. She is going to have a happy life and I have the privilege of going through this journey with her.

I am sure that I will still have my days where I feel like I am missing out on certain things or wish my life were more simple and normal (whatever that means) but I now know that we are ok… I am ok.

Wednesday, August 3, 2011

Great new purchase

I recently ordered Isabelle a sling- the Balboa sling- and she loves it.  I was having a hard time finding a sling that works for her since her neck is still a little floppy.  This one works perfect for her and sometimes we just like to walk around the house like Mommy/baby kangaroos.  Isabelle will instantly fall asleep once she is in the pouch and gets settled.

You can't tell but she is trying to give you a thumbs up!

Isabelle's accomplishments

Isabelle has been doing great and working hard to gain some strength in her muscles and especially her neck.  And look at what she did all by herself...

 She rolled over!! Now, I think this might have been on accident (because she is way too young) but we will still take it.  Her therapist showed us some new exercises to help her figure out how to roll over and I think they are working.  Trust me... she didn't know what to do with herself once she got on her stomach but at least she got there. 
We have been doing all of her exercises every night and we can definitely see a difference.  We love that she gets some extra workouts at daycare too.  They spend a lot of extra time with Isabelle and that makes us so happy. 

Daddy doing some exercises with Isabelle.  Don't worry, he isn't hurting her.  Her neck was going crazy for a bit.
We have learned very quickly that Isabelle likes to cheat on her neck exercises but don't worry, we are on to her. 
We have been working really hard to get Isabelle to take a pacifier but look at what she prefers...
That's right... we have a thumb sucker.  Like mother- like daughter (although, I did finally kick the habit a few years back.)  This is what she decides to take from Mommy?!?  Not my hair, eye color or facial features... nope- thumb sucking. 
I think thumb sucking is cute and all but I can't chop her thumb off when it is time to get rid of the habit.  I remember how hard it was for me to stop.  Plus, the doctors really want her to take a pacifier.  She will need to self soothe after her heart surgery and the pacifier is their recommendation.  From our understanding, It might be hard for her to get her thumb to her mouth with the IV and any other contraption she might have going on.
So, I went out and purchased every pacifier every made (or at least the ones they sell at the local Walmart) and have tried non stop to find the perfect one for her.  During her last therapy session, I laid them all out and had the therapist tell me which one would work the best.  She made her choice and then even started training her with it.  Our therapist has the magic touch... Mommy not so much.  Pacifier= 0 Thumb= 1
Oh well... we won't give up!

Monday, August 1, 2011

Ethan found a creative way to carry Isabelle around the house (in a pair of his shorts).  Althought she was a good sport, we weren't too sure how well she likes it.