Thursday, June 30, 2011

Early Mornings

I am sitting in a very quiet house wondering why I am the only one still not sleeping.  Isabelle woke up about 6:30 to eat but then went right back to sleep.  She is currently laying in my spot so I had to move over to Ryan's. 
 The boys are tucked away under their beds sound asleep. 
They have been enjoying their summer nights of staying up way too late and then we have to wake them up in the mornings.  Our boys are smart and they are playing the "we are not used to the new house" card so they request every night to sleep under their beds instead of in their beds.  Not sure what the comfort is for them, but we are going with it for now.  Had I known that they would enjoy sleeping on the floor rather than in a nice comfortable bed, I would have saved a little money when purchasing their new comfortable beds.
I haven't learned the concept of sleep when your baby is sleeping.  I have tried but then my mind races with things that I could be getting done and the nap is over.  I think I lasted about 5 minutes yesterday before I was in the kitchen doing some organizing.  Then, when I really could use a nap and feel like I am going to fall asleep standing up... Isabelle is wide awake.  Thankfully, Isabelle is a great sleeper at night so I am not waking up ever 2 hours like I did with the boys.  Although, I will hopefully get smart one of these nights and actually go to bed when she does so I can get a full nights sleep.  I am returning to work next week so I need to get everyone back on a regular schedule since the early mornings are coming fast.
But right now... I am enjoying being lazy and waking up slowly listening to Isabelle make all of her noises.  The fast pace of my world can wait a few more days.
And now, that I am just finishing my peaceful blog post, I have one little boy that just woke up and is asking to eat a twinkie for breakfast.  I already let my kids sleep on the floor, would allowing them to eat a twinkie for breakfast make me sound any worse??
My few minutes of peace and quiet have now come to an end and the day has begun. 

Tuesday, June 28, 2011

First therapy session

Isabelle had her first physical therapy session this morning.  She was a real trooper.  I love that her therapy will take place in our home.  It is much more comfortable and I think as Isabelle gets a little older, she will enjoy being in her own environment while getting a work out.  Mrs. T is great with Isabelle.  She is very loving while making sure Isabelle doesn't cheat during her exercising.  I made sure to make some mental notes during the session so we can start doing some of the exercises at home to help build up her strength.
Since Isabelle is so young, she will begin having sessions every 2 weeks.  I am excited to see the progress she will make and the milestones she will reach.
Isabelle having some tummy time before her session.  Please forgive her hand gesture.  We had a little talk about how inappropriate that was.

This is Isabelle after her session.  Mrs. T wore her out.  

Moving in

We have been busy moving everything from the old house into the new house.  Surprisingly, for such a small home it held a ton of junk stuff.  We have had a lot of help moving so we have actually gotten a lot accomplished in just a few days.  My goal is to be completely moved in by the time I return to work which is next week.  I think I can make that happen.
We have all pitched in with putting things together.  Even the boys!
Isabelle's cubby organizer was put together with love
Do you see his concentration?!?
I even got busy and put Isabelle's bouncy seat together mostly by myself.  She loves her new chair.
And this is where we find Isabelle most of the time.  All of this moving has been rough!

Brotherly love...

Isabelle's protector.  Ethan is never too far from her.

Catching up...

We have been busy with moving and getting adjusted so I am now sitting down to catch up with blogging.
It is so nice to be in our new home and to be less cramped.  We still have a lot to do before we are finished but we are enjoying our new space.  We did get hit by the neighborhood pranksters our second night.  We heard the doorbell ring late Sunday night. We didn't think anything of it when we opened the door and no one was there.  The next morning, we woke up to find glitter sprinkled all over the windshield.  Welcome to the neighborhood!!  If that is as bad as the pranks get, then we can handle it.
A few weekends ago, we had dinner at a friends house then headed over the Jetty's so the boys could swim and catch some sand crabs.  They had a blast!!

Nice sunset!

Poor Isabelle- Daddy didn't realize as he was carrying her in her car set, his flip flops were flicking sand right in Isabelle's face.  
Then, we spent a little more time at the pool.  This is the boy's new favorite hang out.  Unfortunately, we didn't take full advantage of this amenity before we moved.  We will have to sneak over there a few more times before we rent the house out. 
My boys

Both boys trying to get on Daddy's shoulders.  Didn't work out so great.
Isabelle relaxing in the shade
The boys have been good sports with the move.  We were without TV for 2 whole days (they thought they would die!!) so they actually had to play with their toys in their new play room and surprisingly they managed not to fight too much.   We also had to find different ways to amuse ourselves often times at Isabelle's expense.
We dressed her up in these silly sock rattles.  She is a bit too young to know what to do with them but we found them entertaining.
We have kept the boys cooped up in the house so we could get things organized so we will have to head to the pool for some much needed relaxing time.

Friday, June 17, 2011

Isabelle's first assesment

Who knew waking up today that I would be so emotional and I don't think I can get away with blaming the tears on hormones for much longer.
We met with Isabelle's physical therapist and RN today and we are excited to be working with them for the next 3 years.  They did the initial assessment to determine Isabelle's baseline and determine what resources she will need and how often.  We were asked a lot of questions while the therapist worked with Isabelle.  We found out that Isabelle does have low muscle tone which we knew her neck was floppy but we weren't aware her other limbs were that affected by the low tone.  Her arms often lay open to her side (As we like to say, it looks like she is praising Jesus) and she moves them around all of the time but we were told that she is having to work extra hard to fight gravity and right now... gravity is winning.  So soon we will learn the right exercises to help her build her tone.  It will be important that she learns the proper way to do things because she will probably try and cheat and learn the easy way instead of the correct way. At first, Isabelle will have to work harder than most in order to get the same outcome.  After hearing the outcome of the assessment, we were encouraged about getting Isabelle started early and the progress that she will make.
As soon as everyone left and Isabelle and I were left alone in the house it hit me and I broke down and cried for a while.  I got myself pulled together and packed us up in the car and then I cried all the way to the store.  See... I wasn't kidding about being emotional.  I knew in my mind and heart that Isabelle would have delays and struggle in order to do the same things "typical" children can do but to actually hear it and it be confirmed was very difficult.  She is my special little girl and I don't want life to be hard for her.  I want to protect her as any mother would want to do for their child.  With this being said, I also know in my heart that Isabelle will learn and reach each milestone that the "typical" child does even if it is in her own timing and that is what gives me hope.
I am grateful that this program is offered to Isabelle and believe me... we are going to take full advantage of it.  Let the exercising and learning begin!!

Tuesday, June 14, 2011

Big brother

Look who loves holding his little sister now!!

Isabelle's Cardiology appointment

Yesterday, Isabelle had her Cardiology appointment in Pensacola.  Her appointment started off with an Echo testing.  The tech wrapped Isabelle up like a burrito and then started the long ultrasound.  Isabelle did great and they were able to get all of the shots they needed to show her anatomy and heart.  It only took an hour and half.  She did much better than I would have done being wrapped up so tight for so long.  It was much easier to see her heart defect with this appointment especially after taking me out of the equation.  Everything still looks the same with her heart defect but her heart is pumping strong and the surrounding areas around her heart look great.  After the Echo test, Isabelle was weighed and she has lost a few ounces since coming home.  She now weighs 8lbs 12 ozs.  This isn't good since she needs to be gaining weight in order to have the surgery.  So, we will be pumping her with as much formula as she can take.  No more sleeping for long periods of time without eating for Isabelle! I was enjoying the few additional hours of sleep but I will gladly give that up in order to make sure she is eating enough.
Then we met with the nurse for her EKG.  After giving Isabelle a little to drink, she laid perfectly still for the testing.  She is a trooper!
Mommy trying to keep Isabelle warm before the testing begins.  Bad Mommy- forgot her blanket.
Getting started.  Trust me... she is alive and not in pain.
Mommy, What are they doing to me?!?
Let me down.  I have about had enough of this!!
We did learn that we will have to watch Isabelle to make sure she doesn't go into congenital heart failure.  Babies begin to show signs of CHF between 1-2 months of age.  Some of the signs that we need to watch for are loss of weight, breathing hard and fast and getting sleepy while feeding.  If we notice these things beginning to happen then we have to contact her doctor and she will put Isabelle on a diuretic to help relieve some of the pressure to help her breathe easier.  We pray that Isabelle will not have any of these symptoms and she will begin to gain weight.
We will go back to Pensacola in 2 weeks for her to get weighed and get a quick checkup again and then we will need to visit her Pediatrician every week for a weigh in.

Isabelle- My Love

Isabelle has been on my mind 24/7 lately.  It might have something to do with us being tied at the hips while I am out on maternity leave but who knows.  I am starting to wonder what I am going to do when I have to return to work.  I am excited about getting back out into the real world but I am going to miss my little side kick with me 24/7.  I have been dragging her everywhere I go.  She and I just went to my dentist appointment and she was a complete angel.  It helps that she loves to sleep with noise around.
I have been losing some sleep thinking a lot about Isabelle and my pregnancy lately.  I am finding myself a little teary these past few nights thinking about her upcoming heart surgery.   We had her cardiology appointment yesterday so it is now at the front of my mind. (I will update about the appointment next)
My pregnancy was very difficult.  When we found out at our 16 week appointment that there were complications with Isabelle, the next 5 months were extremely hard.  We had a ton of family and friends praying for a miracle for Isabelle both with the down syndrome and her heart defect. I am so thankful for all of the prayers because I know that they did indeed work.  Our first diagnosis with Isabelle was pretty rough.  But with each appointment, we continued to get encouraging reports but there wasn't a complete healing (at least in the way we were praying).  I now know that although God didn't choose to heal Isabelle of her heart defect or DS, he doesn't make mistakes.  Isabelle is not a mistake.  She is perfect just the way she is and just how God made her.  Our NICU nurse helped put things in perspective when she explained that really, who in this world is perfect?  Do we even know what perfect is?  When I look at Isabelle, I don't see a baby with DS or her heart defect.  I see a beautiful, loving baby that needs me just like my boys need me. 
Our next big hurdle will be Isabelle's heart surgery.  God has proven to be her protector so far and I know he will do the same through this next trying time.  I can't imagine the emotions or how difficult this time is actually going to be but I know that we will get through it.  Isabelle has already proven herself to be strong and a fighter.
Then once we conquer the heart surgery, we will move forward with Isabelle's therapies and learning to give her every opportunity available.
Since Isabelle has been born, my prayer for her has changed.  I now pray that Isabelle will not be defined by  Down Syndrome or known as the girl that has DS.  She is so much more than that and will have so much more to offer.  I pray that she will defy all of the odds and excel at everything she does.  I want her to have the opportunity to achieve whatever she chooses in her life.  To become a smart, strong, loving woman she was made to be.  I am sure this is the prayer of any mother for their child.
Just in these 3 short weeks, she has blessed our family and shown us a new love.  She has our hearts completely and we are blessed to have her in our lives.

Saturday, June 11, 2011

Busy day...

We took a trip to Home Depot so Daddy could get some supplies for a DIY project. 
The boys found a good place to rest while Daddy was figuring out what he needed.
Isabelle wasn't impressed with Home Depot 
 Then the boys had a busy day of pool parties.  They started out with the annual pool party for the kids at the church.  They had a blast and Mommy and Isabelle were thankful for a little down time while they were away playing.  Then we picked them up just in time to make it to Ethan's friend's birthday party and ended that party at our Community pool.  

It is crazy to think that we have had access to this pool for 7 years and we have only visited 1 time.  We will have to take advantage before we make our move to a different neighborhood.  It is sad that it took a birthday party to remind us that we have a Community pool that we could relax in.
Daddy worked all day on his DIY project which I must say, I am very impressed.  He got so wrapped up in it that he was outside in the heat all day long.  When we returned from the party, the kids and I went inside to relax from our long day and then Daddy came in to shower and change.  A few minutes later, I heard some commotion in the bedroom and yelled out if everything was ok.  I didn't get a response so I went in to see what had happened and I find my husband passed out on the floor.  I was finally able to get him to wake up but he was so disoriented and mumbling that I was worried.  Come to find out, he had not eaten all day so mix that with the heat and that is a recipe for disaster.  He is now doing ok although his brain is still not working properly.  He couldn't even figure out how to heat up mac and cheese!  
Thankfully, the kids are all asleep now and Ryan is laying down as well.  I am ready for this eventful day to be over with and start fresh in the morning. 

Thursday, June 9, 2011

My sweet Isabelle

I have been busy making appointments and trying to learn all I can with Isabelle.  We had our first assessment on Monday with our case worker for Early steps.  I am excited to get started with her therapies so we can learn the things we need to do to get her muscle tone stronger.  Her neck is the main area that I can see has low muscle tone.  She seems to be strong in her arms and legs at this point.  We should have our first session in the next couple of weeks.  I am eager to see what her base line is and to see where we go from here.
I never knew how much was needed to get started with all of these programs.  I feel like I am talking with someone every day.  I am having a hard time remembering who is with which agency and keeping the agencies straight as far as what they do.  I am sure I will learn it all as time goes on. 
Now that Isabelle is here, a lot of my fears have been pushed to the back of my mind.  I no longer think about the "what ifs" everyday.  Now I think about Isabelle and the here and now.  I am in Mommy mode.  I love her so much already and I often times find myself just staring at her.  She is beautiful and she has my heart!!
I am sure that my fears will show themselves again.  My upcoming fear is her open heart surgery.  I just can't imagine going through this.  I don't think any parent should have to hand over their baby to a doctor for this type of surgery and I can't fully grasp the type of emotions that we are going to experience.  I know that God will protect her and she will do great but a Mommy still worries.  
But until then, I am going to put these worries aside and just enjoy my special time with Isabelle and love on these big cheeks!!
  This video is sideways... but this is what Isabelle does for hours at a time. I just sit and listen to the sweet sound.

Family Time

I am enjoying my maternity leave so far.  On Mondays, we get to have family time since Daddy is off of work also.  This past Monday, we kept the boys home with us and went to Calhoun Park in Destin.  We had a picnic and then the boys played in the water.  I wish I would have taken my swimsuit so we all could have gotten in.  The water looked beautiful!  Then the boys played on the swings and playground while Isabelle and I cooled off in the shade.

The boys trying to feed the fish with our leftovers from lunch
Isabelle relaxing in the shade

Bonding time...

Isabelle has been home now for a little over a week and we are all adjusting well.  Ethan absolutely loves Isabelle and can't walk by her without giving her a hug or a kiss.  Aiden has taken a little more time to warm up to her.  He loves her but wasn't too sure what to think of our new addition.  Last night, he finally held her, feed her and gave her some much needed love from her big brother.  They had some great bonding time.
Now, the boys love to feed her but still won't have anything to do with diaper changing.  I will take what I can get.  I love my little helpers!!
Ethan taking his turn feeding Isabelle
 They boys do great with the feeding until Isabelle starts drooling the milk out of her mouth.  They think she is spitting up and begin to freak out. 
Daddy holding his FSU baby
This is where I found Ethan one morning.  Loving on Isabelle.

Aiden bonding with Isabelle (with a little help from Ethan and Papa)
I love my kids!!

Isabelle is a great baby and has already blessed our family so much.  We can't imagine our lives without her.  She completes our family!

Saturday, June 4, 2011

Isabelle's birth

Isabelle is here!!
Isabelle shortly after the delivery.  She is very swollen!
Mommy and Isabelle before she is transported.
Monday, May 23rd, was a whirlwind.  I went to work for about 45 minutes to get as much work done as I possibly could because I had a feeling I would not be returning for 6 weeks.  At 9am, I went to my doctor's appointment for my 38 week check up and found out that I was almost 7 cm.  I thought I was so ready to hear that today was the day we will meet Isabelle but when I heard those words, I began to panic.  I was told that I needed to go straight to the hospital.  I began to make my calls to Ryan and my Mom to get to the hospital quickly.  I didn't want to be by myself for long.  I walked into the hospital alone but the nurses quickly made me feel welcome and took great care of me.  I was set up by 10:30am and found out that we would start pitocin to get things moving a bit faster.  Even at 7cm, I was walking around town like normal (well, I did have a slight waddle).  I really don't think my body knows how to go into labor on its own. 
By 12:30, I had the epidural and at 1:30 Isabelle was here!  That was one quick delivery.  Needless to say, the epidural didn't have time to fully kick in but I survived.  She weighed 8lbs. 15 ozs. and was 20 1/4ins. long  She definitely didn't want to be left out so she had follow in her brother's footsteps by being big!
Ethan didn't know what to think about his sister hooked up to all of the wires.
 My emotions were raw after the delivery.  I cried uncontrollably as they placed her on my chest.  I already loved her so much but I was so scared.  There was no more denying anything.  Isabelle was here and she is mine.  I knew from the moment she was placed in my arms that the doctors were correct and she had Down Syndrome.  Although, if you asked me to describe what she looked like, I wouldn't have been able to.  I held her only for a few moments before she was whisked away to be worked on.  The only thing I remember was that she was purple from head to toe.  I had never seen a baby look that way and it terrified me.  I didn't realize how touch and go things were until later.  After a few minutes, I heard her cry and I thought we were in the clear now.  Her color had returned to pink and other than being pretty swollen, I thought she was doing well.  From my understanding, due to the delivery happening so fast, Isabelle had too much air in her stomach and her lungs could not expand to get her the oxygen that she needed.  So the nurses took Isabelle to the nursery to try and regulate her oxygen levels.
Daddy and Isabelle having some bonding time.
 A few hours had passed and the Pediatrician came in and asked everyone to leave except Ryan and I.  I had a feeling what I would hear next... They were going to transport Isabelle to the NICU in Pensacola.  They couldn't get her oxygen levels to regulate and they had done all they could do at this hospital.  They were sending the transport team to pick her up.  Our biggest fear was happening.  I was going to be separated from my baby.  I never realized how difficult that would be until that moment.  She had been with me for 9 months and now the day that I finally get to meet her, she is taken to a hospital over an hour away and I can't be with her.
 Ryan, Mimi and Papa decided that they would go ahead and leave to get things ready to meet Isabelle in Pensacola.  Thankfully, my Mom and Stephanie stayed with me so I wasn't alone.  I don't think I could have handled that.
The transport team brought Isabelle in before they left to explain everything and it was very hard to hold it together.  The team was very encouraging and supportive but she looked so fragile in that bed and I wasn't the one that was going to be there protecting her.  I felt helpless.  That night was very rough- my mind was spinning and my emotions were all over the place.  I didn't get much sleep even though the nurse had given me a sleeping pill.  I woke up every few hours in tears and longed just to hold my baby.
Thankfully, Dr. E came in bright and early the next morning to discharge me so I could get to Pensacola and be with Isabelle.  As soon as they released me, Mom and I got on the road.  We rushed around to get things for our trip since we didn't know how long we would be staying in Pensacola.  It seemed like I couldn't move fast enough.  I felt Mom was driving way too slow (which she wasn't) but I am sure even if we were driving 100mph, I would have felt that I couldn't get to Isabelle fast enough. 
By 2pm, I was sitting with my baby in the level 3 area of the NICU.  This was an eye opening experience.  My first thought after seeing Isabelle next to the other babies was that she sure didn't look like she belonged here ( I think the other parents were thinking the same thing).  My baby was a giant compared to these other tiny infants.  Her little neighbor was a 3lb. preemie! 

Ryan and I learned a lot in this short week.  We had many visits from social workers, doctors and other agencies.  We quickly learned what our new life would be like.  During that week we had to take CPR classes and complete a "room in" with Isabelle.   We passed both!
This week was so hectic and the days seemed to fly by but also time stood still (if that is possible).  Ryan would have to remind me to slow down and rest since I did just have a baby.  I didn't feel like I had time to rest, I needed to spend every waking moment with Isabelle. I felt guilty when I had to leave or just needed to rest. I didn't want Isabelle to be alone.
The nights remained the hardest since I couldn't be with Isabelle.  I was completely exhausted and overwhelmed with emotions.
Most days, I was sure the nurses and other parents thought I was a a bit crazy. I was fine one moment and then crying the next. A lot of times, I would excuse myself just so I could find a quiet place to cry and let everything out. That first week was so emotionally draining and I never knew I had that many tears.
Slowing Isabelle gained her strength and was taken off of oxygen.  Then she was moved to the level 2 NICU.  This was a huge accomplishment and proved that she was getting better slowly but surely.

 Before Isabelle could be released, she had to pass a car seat test.  She was tested in her car seat for 90 minutes to make sure her oxygen levels and heart rate did not drop.  I got her all set up on Friday night and gave her a little pep talk and then Mom and I left for the night.  I was so nervous for her and so ready to get home but when we arrived Saturday morning, we learned that she had failed her test twice.  My heart sank.  Then I was told that they were going to test her in a car bed and if she passed, she would be sent home with the bed until she was able to sit in the regular car seat.  Mom and I left during her test to grab some lunch.  The entire time, I was praying for her.  We finally got the call that made me want to do the happy dance.  Isabelle had passed and we were going home!!
By Saturday evening, Isabelle and I were back home with our family.  Our new family of 5!!
Isabelle sleeping in her own bed
Ethan feeding Isabelle
Isabelle trying to get some beauty rest!