Monday, October 24, 2011

5 months old...

Isabelle is now 5 months old. Time is flying by way too fast!! 

* Isabelle currently weighs 11lbs.
* She recently started eating cereal.
* She is rolling over from her back to front.
* She smiles often and is very curious.
* She loves her brothers and watches their every move.
* In therapy...She is learning how to sit up and roll from her back to front and then front to back.

Isabelle is our strong little girl.  Just 3 weeks ago, she went through open heart surgery and she is recovering like a champ. 
We love you baby girl!!  You make us so proud and you have completed our family.

Buddy Walk

Saturday, we participated in our first Buddy Walk.  We I decided at the last minute that our family would participate so I signed up and raised as much money as I could in 2 weeks.  Saturday came much quicker than I had expected.  I realized I was more scared than excited.  These past 4 months our Down Syndrome world has only consisted of Isabelle.  As we got closer to the park, I became more quiet and anxious.  In all honesty, if I wouldn't have had a van full, I might would have passed our destination and landed at Pier Park for a day of shopping.
But we arrived, signed in and found a spot to set up for the day.  Shortly after our group picture, all of the children with DS were called up to the stage.  I sat on the stage holding Isabelle amongst the other children/adults and began to tear up.  At that point, I was thankful that I remembered my sunglasses and had learned to count to 10 as a child.
I am now part of a new family that I had never anticipated belonging to.  I felt so welcomed but at the same time, I was in system overload.  I don't know that I was quite ready yet. Ready to see a snap shot of what the future might hold.  Ready to embrace this new life completely.  Up to this point, I was still in our little bubble.  The bubble that I had put around Isabelle and even myself.  I didn't realize I still had some very raw emotions to work through. 
Although Ryan and I were having an emotional time that day, the boys had a blast.  They bounced and danced the day away. 
Ryan and I were not emotionally prepared or ready this year but we will get there and we will join again next year to celebrate Isabelle and all the other children with that little something extra.

Mikayla and Izzy

The kids trying out Zumba
(We are thankful for Aunt Stephanie, Mikayla and Ian going with us.  We aren't sure if we would have made it through the day without them!)

Friday, October 21, 2011

Cereal time...

Look who ate cereal for the first time last night...
 Isabelle loved it and ate every last bite.  Hopefully we will start to see some weight gain now.
If Isabelle looks scared in this picture, it is probably because she is.  Her Daddy is dancing in the background and trust me... it is a scary sight!

Isabelle looks a little out of it at this point.  I think she is dreaming about her next bite.
We are starting off with a little cereal at night and then we will add the morning as well.  My baby is growing up way too fast!

Tuesday, October 18, 2011

Our little man is growing up!

Aiden turned 6 years old on Sunday.  This year he wanted to have a costume party so Saturday, he had some friends over to the house to celebrate. 
Mean Vampire
Things to know about Aiden:
* Aiden started Kindergarten this year. He is doing great and is already reading on a first grade level.

* He started playing baseball and soccer this year.

* He loves playing with all different toys. He is pretty much into anything Ethan is- Legos, DS game and more Legos- (which of course Ethan loves because he thinks it means more toys for him).

* Although Aiden has a lot of food allergies, he loves to try new foods. Surprisingly, he isn't our picky eater in the family.

* He loves being a big brother. It has taken a little longer to warm up to Isabelle since she took his role as the baby of the family. However; now that she has gotten a little personality of her own, he is spending a lot more time trying to make her laugh. He did carry her around the house all by himself a few days ago and he loved it (this is a big step for him). He takes his role as big brother very serious now.

* Aiden is very funny and keeps us laughing each and every day. 
* He has a nervous laugh and often laughs at inappropriate times (when he is in trouble/most serious moments).

We love you Aiden and we are so glad you are a part of our family! 

Tuesday, October 11, 2011

Quality Time.

Ethan spent some quality time with Isabelle last night and read her a bedtime story.

Strong girl!!

Isabelle has been amazing us at how fast she is recovering.  As soon as we brought her home from her surgery, she started rolling over onto her tummy again.  We thought for sure she would hold off on that for a while.  Her neck has gotten so much stronger so we decided to pull out the bumbo chair and give it a try.

Aren't you going to help me?!?

No seriously... help!

I did it!!
On Monday, Isabelle had her first physical therapy since her heart surgery.  We had been warned to expect her to take a few steps back while she recovers.  Once again, Isabelle proves us wrong.  Not only had she not take steps backwards but she progressed further. 
She doesn't seem to mind being on her tummy so we can start tummy time again.  She is also learning some new exercises. 
We are so proud of you baby girl!

Isabelle- Open Heart Surgery

On September 28th, Isabelle Claire had open heart surgery.  In that week- that seemed to last a lifetime- I learned that Isabelle is my new little hero.  She is stronger than I could have ever imagined.  Isabelle has always been a fighter and seemed to want to prove everyone wrong about her.  At 16 weeks, I was told that my baby might not make it through the pregnancy... she did.  When I was told that there were too many things wrong with my baby... she fought and proved the doctor wrong and she hasn't stopped amazing the doctors ever since.  As a Mommy, I never imagined that I would face such difficult times with my baby but she is helping me realize, I am stronger than I thought.  I am so blessed to have Isabelle in my life.  It has only been 4 short months but she has changed me and I am excited to see what our future holds together.
We left for Orlando on Sunday, September 25th for what would be one of the most difficult times I have faced (and I wasn't the one going through the surgery.)  I am so thankful that we had family that came to be with us.  The prayers and support of family and friends is what held us together.  It is humbling to know that so many people were praying for Isabelle and our family.
Monday morning we arrived at Arnold Palmer Hospital for Isabelle's pre-op testing.  She started out with a sedated echo cardiogram.  This little girl is feisty and decided she had had enough sleeping so she woke up before the echo was even completed. At least she cooperated so they could finish everything they needed to do.
Waking up from her echo
One test down and next up was her blood work.  As you can see in the picture, Isabelle has some great veins in her head. This is a nurses dream come true... not so much for Mommy.  But  we knew pretty quickly that Izzy would be getting her blood drawn from one of those nice veins in her head.  We were asked a lot of questions to prepare for the surgery and then it was time to get her blood drawn.  Surprisingly she didn't cry too much.  I can't say the same for me.  She was definitely a lot more brave than I was.
Last but not least...the chest x-ray.  This one was short and sweet.  Once we got into the room, we were in and out within 5 minutes.
After the x-ray and lunch, it was the waiting game (4 hours of waiting).  We had to meet with the surgeon so we could ask our questions and find out all of the details of her surgery.  In reality, I didn't mind waiting because if he was working on my baby, I would want him to take his time, do everything right and not rush out to meet someone else.  So I was just fine waiting our turn.  But once the meeting started I realized I didn't really like these types of meetings because the Doctor has to tell you all of the worst case scenarios and my worries and fears multiplied by 100. 
After our long day at the hospital, we packed up and headed back to the condo to meet up with family that drove in.  It was nice to be able to sit around with family to help take our minds off of what was going to happen the next morning. 
That night, we took the boys for a swim (in the rain) and then spent some good quality family time.
Can you tell I am excited to be sitting in the rain?!?

On a side note... A few people had a run in with the sliding glass door.  Come to find out, Papa, Nana and Aiden all ran into the sliding glass door Monday evening.  I guess the resort cleaned the glass doors a little too well. Thankfully, Aiden was the only one with a goose egg.
Everyone spent a little extra time loving on Isabelle that evening.

The boys were having a hard time understanding exactly what was going on.   We had told them from the beginning that Isabelle would have to get her heart fixed.  From the time they learned about Isabelle's heart defect, the boys added into their prayers... we pray for Isabelle's broken heart.  Even though we had talked a lot about Isabelle's heart, it was still hard for them to comprehend such a big surgery at their age.
We had taken them out of school for the week because I needed my family to be together.  But...everyone knows that you go to Orlando for vacation - Disney World- so trying to get the boys to understand that this trip really wasn't a vacation was hard work.  I was thankful that everyone took turns keeping the boys so they could do some fun things to help keep their mind off of what was happening with Isabelle.   
I can honestly say that I got maybe 2 hours of sleep Monday night.  I just starred at Isabelle all night.  I watched her sleep and realized that my baby had no idea what she was facing the next morning.  I had held in my tears until that night.  While I was watching her sleep, I cried for what she was facing and selfishly, what we were facing.  I tried to prepare myself as much as possible but I didn't know how to prepare for something like this.  I had read blogs and boards but until you are in that moment and it is your baby, it is hard to comprehend the emotions.   

We got up the next morning and spent some more quality time with Isabelle.   We arrived at the hospital at 6am to get checked in.  They got us back into our room pretty quickly and the nurse started getting Isabelle's vitals (well, tried.  Isabelle was on strike since we didn't give her any milk).  At this point, we were all holding it together pretty well.  Then the head nurse came in our room and told us that we are going to be put on hold for a few hours due to a newborn born on Monday that needed emergency surgery.  We were able to feed Isabelle which meant that we had an automatic 2 hour hold on the surgery.  About 30 minutes later, the head nurse arrived and gave us the news that Isabelle was getting bumped and we would have to wait to hear from the surgeon's assistant later that day to find out if she would get in on Wednesday.
I had mixed emotions at this point.  My heart ached for the newborn that needed emergency surgery.  I could relate to that new Mommy that has her baby taken right after birth.  We were blessed that Isabelle's surgery wasn't considered an emergency but I had prepared myself for this day the best I knew how and now it wasn't happening.  Which meant, that I would have to go through this entire process again the next day.  I just wanted this entire event to be behind us so she could start recovering.  However, I do know that everything happens in God's timing.  Tuesday was not Isabelle's day.  This little newborn needed the surgery more than Isabelle on that particular day.
So, instead of surgery we had a family day of swimming, playing and eating (and getting lost for about an hour but that is another story).  Although this wasn't what we had planned, we did enjoy one last day together before the surgery as a family. 
After seeing this picture, I now understand why so many people say Isabelle is so pale and needs to get some sun.  Ryan and I just realized that no one ever says that when Ryan is holding her.

Love the face, Izzy!
Tuesday night, we went through the same process and gave Isabelle a good bath, fed her one last bottle of formula and then went to bed.  I had deja vu- no sleep for me but instead I watched my baby girl sleep.
We woke up bright and early again and headed back to the hospital.  We got checked in, were sent back to our room and the nurse came in to get Isabelle's vitals.  We saw the head nurse from the day before and we prayed that she would keep walking (which she did).  Wednesday was Isabelle's day.

See what I am talking about... those veins!
There was no turning back now.   My Isabelle was going in for heart surgery.  The hardest moment of that morning, was handing my baby to the nurse and watching her watch me as she is carried through the doors.  I was doing so good until that moment and then I broke down.  We walked out into the waiting room where our family was waiting for us.  I so needed to see them!  We waited in the surgery waiting room for updates.  First update was that she was now prepped and surgery was about to begin.  Next, we learned that her heart was stopped and on the heart/lung machine and the doctor was doing the repairs.  Then, we found out that her heart was pumping on its own and they were finishing up.  The surgery took about 4 1/2 hours and they were done by 12:30.  Looking back on it was a lot faster than we had anticipated.  An hour later, we were able to go back and see our baby.  You can't really prepare yourself to see your baby that way but she made it and now we had the surgery behind us so we were encouraged.

Poor baby girl had to have her arms restrained.  Even being sedated, she is a mover.

Special thanks to Allison and Lila who kept the boys busy during the surgery.  The boys made a new friend with Lila and were talking about her for the rest of the week.  They made Isabelle a poster and had everyone sign their names so we could hang it in her room.  Isabelle couldn't say it at the time but I know she loved it!  I am sure she had the coolest room ever- filled with a poster, a special picture from Aiden (he drew a picture of a thunderstorm since she is always sleeping during them) and a turtle from Allison, Mark and Lila.

Those next few days were a blur.  Everything seemed to move fast but at the same time, things moved so slow.  By the second day, Isabelle's breathing tube, chest tube and pacemaker wires had all been removed.  And this would be the day the boys would be able to see their sister.

We knew the boys were not handling things very well... especially Ethan.  They were really missing Isabelle but I knew that they were not quite ready to see her with all of the tubes in.  The hospital has a great program that helps siblings understand what goes on in the PICU and specifically what Isabelle is going through after her surgery.  We meet Lauren, the child life counselor, and she set up a room with a large "Isabelle" doll that has all the tubes and wires that our Isabelle has.  She explained in detail and in a way the boys were able to understand what they would see when they went in to visit with Isabelle.  She explained that all of the tubes and wires do not hurt Isabelle but help her get better so she can come home.  Lauren was so good with the boys and helped ease some of their worries.  After the meeting, with the help of Lauren, we decided that the boys were not quite ready to see Isabelle until the breathing tube was taken out.  Thankfully, the breathing tube came out on Thursday afternoon so the boys were able to see Isabelle after a day and a half.  That is the longest they had been apart.

The 3rd day of recovery was the hardest for Isabelle.  At that point, the doctors were lowering her medications which included the medication that kept her sedated.  She seemed to be in a lot of pain or at least very uncomfortable.  I wasn't able to hold her yet so it was very hard for me to stand and watch her be so uncomfortable and not be able to really do anything.  She just wasn't herself.  I wanted to see her smile and look at me and recognize me- her Mommy- and that just wasn't happening yet.  After a few hard days, she started coming around and I finally got a little smirk out of her.  I think she won over the nurses as well.  I wanted to be with her 24/7 but that wasn't possible and the nurses made me feel so comfortable and I knew Isabelle was taken care of.  There were a few times towards the end of her stay that we would come in and Isabelle was hanging out at the nurses station.  That made me feel good like she was getting lots of love.

(Arnold Palmer Hospital had the most friendly staff and we couldn't have asked for anything better.  We felt welcome from the moment we checked in at the front desk to get our badges to each and every person that came in contact with Isabelle.  We knew Isabelle was in good hands during her stay.)

Once she was able to, we took strolls around the unit (which she loved... she is like her Mommy, can't stand to be cooped up).  We met some new friends and we met that little newborn that needed the emergency surgery.  We said a little pray for her as we strolled that day.

Getting out of the hospital for a much needed break (play area outside the hospital)

This is as close to Disney World as the boys got... the lobby of the hospital.

On Tuesday of the following week, Isabelle was released from the hospital.  It is hard to imagine after 6 days, we were heading home. 

Isabelle can hardly believe it herself!

Isabelle ready for the ride home
She has been recovering so well.  She is still sleeping through the night but the day time naps are over for now.  We are lucky if we can get 30 minutes in.  Each day that passes, I see my little girl slowly coming back to us.  She is amazing!!

Isabelle learned to take a pacifier while she was in the hospital.  Her thumb is still her first choice but she is learning.

This sling has been our best friend.  If she is uncomfortable or fussy, she gets right in and falls asleep. 
These days are forever etched in my mind and heart.  I am now and forever a heart Mommy and she is a survivor.  September 28th will always be Isabelle's heart day.