Friday, May 27, 2011

Reflecting: A Week After Surgery

I like to help others.

I want to make a difference in the lives that I come across.

I would like to be part of a significant change.

I wish that I could reform the world or at the very least, make it a better place for my children.

I know, I know... how very pageant queen wanna be of me.

The truth is that I just want to be remembered for something other than my name and face.

I hope that when my time comes to be with the Lord that my children will be able to honestly say that I was a good mother to them, that my husband can say wholeheartedly that I was a good wife and my friends will be able to say that I was a good friend. I hope that there will be memorable stories about me, ones that are positive and ones that have worth.

It makes feel good when I have done something that makes my family proud of me. It makes me feel good when I have helped another person or changed a negative thing into a positive one. I like when people come to me for advice and when my opinion is valued. It makes me feel like I am doing something right in that particular area.

This last Monday, when Vada and I went back to Peoria, I ran into Gale. Gale was the lady/nurse that gave Justin and I our tour of the Cardiac ICU and talked to us about what to expect with the surgery, recovery and the hospital stay in general.

I was signing papers when I saw Gale come onto the floor with another lady. I could tell that she was giving this women a tour as well. The lady looked terrified. I wondered if I too looked the same during our tour. I'm sure that I did because I was frightened in a way that I had never been before.

Gale introduced us, but for the life of me I cant remember this ladys name. I am terrible with names and I feel awful that forgetfulness is a trait of mine. (She was from Champagne and her daughter was only a couple of months old.) Anyway, I said hello, did some small talk, showed her Vada's chest and told her everything would be okay. Her voice was small, quiet and shaky. I wanted to hug this stranger but didn't. We said our good byes, I wished her all of the luck that I could and we went our separate ways.

Later in the day I was going back down stairs in the hospital when I saw this women again. This time she was sitting with her baby (she didn't have her when I had first met her), and an older women. I smiled at her and almost walked away but didn't. I felt a pull and I asked her if I could come see her baby. Her daughter, whose name I also forgot, is beautiful! A sweet blonde with crystal blue eyes. Ones that were illuminated with the special specks that may only come with that extra chromosome that our Vada also has. She was precious. I said a quick prayer in my head the moment that I looked at her sweet baby doll face.

It was on Monday when we met. This little ones surgery was the next morning. The same as Vada's, only one week later. Soon, they would be where we were at and then they too would be coming home. I prayed for that to be their story.

The mother and the grandmother both had all kinds of questions to ask me. Questions about the surgery, questions about Vada's health, her milestones and our experiences thus far. There was a sadness in the mothers voice and in her eyes and I couldn't tell if it came merely from the fear of the up coming surgery or if it were more than that. If I were to guess I would guess that she was unaware that her daughter had Down syndrome until her birth. I couldn't imagine having things happen that way. I'm glad that I knew before hand.

It felt good to answer the questions for them. I remember when I was pregnant. I searched for answers and I wished that I had had someone whom I could personally talk to and physically see, not just people online, who had experience with Down syndrome and the different health issues that we were going to be facing. Even with Vada's heart surgery, I searched. I had a lot of support but it would have been nice to have a friend who knew what I was going through and to have them here in person to talk to.

Tonight, two weeks ago we were expecting to be released in the morning. I have prayed every day that this mother and her family are expecting the same thing. I hope that their daughter is doing well and recovering wonderfully. I hope that in some small way that I was able to make a difference and maybe that I even helped alleviate some amount of fear or stress for them.

Yesterday, I called the hospital and I left a message for Gale. I told her that I wanted her to give my information out to anyone that she thought I could help. I dont know how I could help, other than being here to listen to someone, telling them what I know and what I have experienced in our journey so far, but I would like to try.

I realize that I am a minor in a major league when it come to experience with Down syndrome. I realize that Vada is barely fourteen months old and before my pregnancy, I knew nothing about Down syndrome. Others have years of parenting and sibling experience with Down syndrome but I still want to help. I just want all parents to think that their child is amazing, even if they happen to have Down syndrome. It doesn't have to be a sad thing. You don't have to morn over it. It can be celebrated and embraced!

Tonight, I pray again for this mother and her daughter as well as the dad and the family. I pray that they will be coming home soon and that the sweet baby girl grows up healthy and strong and I pray that I helped them and maybe, just maybe that I can help others.

Thursday, May 26, 2011

Special Deliveries and Prayers for Friends

Today Vada and I received a very special package in the mail. It came from our friend Annie at The House That Jade Built. Annie sent Vada a homemade personalized heart warrior blanket. I'll admit... I love, love, love receiving packages in the mail! Especially, when they end up being this cool. Thanks Annie for thinking of us!

Annie and I met cyberly (Is that a word?) several months back, when she was pregnant. We have yet to meet in person but its in the works for once our girls have fully recovered.

Since Ollie's birth Annie has become a stay at home mom to her three children. On top of taking care of her kiddo's Annie also has an Etsy business that she runs from her home. You can check Annie's Etsy store out here, when it's up and running again. Right now, as she awaits Ollie's heart surgery, she has decided to take a short break.

I'm not writing this to sell Annie's items, but she did send some of her products to us. Plus, she opened up her Etsy store to help make a little extra money so that being a stay at home mom would be an easier thing to do. Sometimes choosing to be a stay at home mom means giving up a lot, but in my opinion, it's all worth it and there is no better job out there than taking care of your children. With that in mind I feel as another stay at home mom that I have to tell you about the cool stuff that Annie makes and sells.

Along with the personalized heart blanket Annie sent this beautiful stamped necklace. I hadn't realized that it was in the bag when I opened it. I was so excited to receive the blanket and Ollie's prayer card that I didn't check for anything else. I was getting ready to recycle the bag when I happened to see the tiny box that the necklace was in. What a sweet surprise!

The necklace says "precious in His sight". I thought it was only appropriate to put it on Vada... and then take it right off, because she is only fourteen months and it went straight to her mouth! Duh, Mom! Its beautiful and I plan on wearing it until V gets a little older, then i'll give it to her. This necklace, along with the blanket are two examples of what Annie makes and sells in her Etsy store. Again, when she reopens it, you'll have to check it out! Thanks again Annie for thinking of Vada when you made this fantastic blanket and thank you for the necklace... it is precious!

Now that Vada and I have shown off the cool stuff that Annie sent to us Vada wants to show you her friend Ollie (See how she points to that pretty little girl in the picture?). Ollie was born with a similar heart condition that Vada had, only Ollie's condition will need to be corrected much sooner in her little life then Vada's needed to be.

Having gone through this surgery and knowing how many people prayed for her. Vada wants to ask that each one of you who read this to say a pray for Ollie. You don't have to know Ollie to pray for her or to pray for her family. The power of prayer is amazing and God loves when we talk to Him!

Ollie's heart surgery is scheduled for June 9th, 2011.

I prayed for the same thing with Vada that I now pray for Ollie and her family. I pray that the nurses and doctors have a realization that Ollie is not a number. Ollie is a child, a grand child, a sister and a friend. She has worth and value that is unmeasurable and she has a family who loves her dearly. I Pray for her family to have a calmness wash over then in their time of wait. I pray that they all will be strong in their faith and in the knowledge that God is with them, always. Finally, I Pray for a quick recovery and that Ollie's repaired heart helps her blossom into the strong little girl that she has already proven herself to be, but after the surgery, that she has nothing holding her back.

Wednesday, May 25, 2011

Small Fish in a Big Pond

Jasmine and the rest of this years fifth graders have lost their chance to be the "big fish" or the "top dogs" in their schools. (Do those phrases out date me? I feel as if they do.) Anyway, this was the last year for our area Elementary schools to have the sixth graders, this coming fall the sixth graders will now be part of the Jr. Highers. The lost "Rights of Passage" didn't phase Jasmine, in fact she is more than willing to give that right up just to become an official member of the Jr. High School Clan.

Today was her awards ceremony, as I sat listening to all of the things that were being said from the principle I couldnt help but get lost in my memories of her younger days.

This girl of mine. My eldest. My first. She drives me crazy at times. She can bring me to tears quicker than most others can. She has a attitude that comes out and bits me in my butt as well as her own and she is beginning to act as if she needs me less and less, which is sad but also a part of adolescents-I guess.

This girl, my daughter, she can also warm my heart with her voice and a few choice words that she speaks. She impresses me daily and has amazing capabilities.

This girl, Jasmine, I love and cherish her, beyond any words that I could ever speak, let alone write. I wouldn't trade her for anything or anyone else in this world and I am grateful for the gift of being her mother.

Tuesday, May 24, 2011

Sound Asleep

Vada may look a little tired but don't let her looks deceive you. She's recovering and she is most definitely gaining strength each and every day that passes.

This morning she woke up early and ready to play. I however, was not...ready to play or fully awake.

I am so, so, so tired. I didn't sleep well at the hospital and prior to that I hadn't had a full nights sleep in ten months. No joke or exaggeration, it's been that long! Now, it's like I cant catch up. Someday. Someday she will sleep through the night and then, so will I.

Anyway, that's all besides the point.

This morning Vada ate real food! I give her all kinds of different foods to try. I know some of the things that she prefers to chew on and I throw them into the mix but I don't let them become all that she experiences. Today, I made her something new. I made Malt O Meal, the chocolate kind. I left out the added sugar and salt and otherwise made it as directed, nothing added, nothing special. She took about ten bites... and swallowed! I couldn't believe it. The texture is so odd, I would have never imagined that she would like it, but I was wrong, she did!

Then, tonight, before dinner, she was so tired and kept nodding off. It was so sweet, but I knew that I had to keep her up a little while longer. Otherwise, I would be up all night with a little one who would think it was time to play. I quickly heated up some left overs from last nights dinner. It was rice with broccoli and cheese. She liked that too! She took several bites, packed quite a lot of it in her cheeks but I would be willing to bet that at least half of what she took, she swallowed. This is huge! I could tell she was finished when she spit out everything that was in her mouth out. That too is a good thing. No chipmunk cheeks full of unwanted food. Nope, she know what to do with it all, one way or the other.

Now, she is in her bed. Where she should be. Sleeping soundly and hopefully having sweet baby dreams and that's my cue, my bed time call. Good night everyone!

Monday, May 23, 2011

The Best So Far

We had been home around thirty-six hours before we had to turn around and head back to Peoria. Make no mistake, this was not a trip full of concern but a mere post-op check-up.

I swear that Vada knows the hospital. She knows when we walk inside, where we are. Her demeanor changes, just like it did when we came home.

She was pretty laid back but a little cautious of the onlookers and of the blue and white coats walking around her.

She had lab work and a chest Xray done today and then we met with the Surgeon. He said that her labs were wonderful and the Xray was the best of Vada's that he had seen so far! He reduced the diuretic and stopped the medication to help boost her potassium. We will see him again in five weeks.

Our visit to OSF lasted about four hours but there is not much to say except our little Heart Hero is doing great!

Thank you to everyone who prayed for her. Your prayers helped make her strong. God was and is with her all of the time but was most defiantly was felt the day of her surgery and throughout her stay in the hospital!

Saturday, May 21, 2011

An Unexpected Visitor

Vada took a special interest in this necklace. Ironically, it's the one that her Aunt Lindsey gave me and I wore it from the day of surgery until we brought her home. I want to wear it on Vada's surgery anniversary date each year, so I have to protect it from Vada's grip!

The evening was warm and the air smelled like fresh cut grass it was a perfect night to bring Vada home. After playing inside for awhile, Daddy, Vada and I went outside to wait for Grandma and Grandpa to bring her big sisters home. Kiliegh accidentally found out that we were coming back today but we were able to still keep it a secret from Jasmine. We wanted to surprise them both.

 They ended up walking to our house from Justin's parents. Its only about a mile away. Jasmine and Annette somehow got ahead of Jim and Kiliegh and Jasmine was the first to see Vada, Justin and I standing in our yard. She yelled with excitement when she saw Vada and I, which was refreshing, I'm not usually Jasmine's favorite person these days.

Next it was Grandma who walked into the yard. She knew we would be home but was excited all the same.

After saying hello's to Jasmine and Grandma, Vada looked on. It was like she knew there would be more. She knew that there were two who had yet to make it.

They all took the back way, through the neighbors bushes and from the alley. As soon as Kiliegh came through she began to run towards Vada and I.

She has a older wisdom about her. She knew that this day would come and that everything would be okay.

Finally, Grandpa made it over to us. It's impossible to pick who is Vada's favorite person (*cough* me*cough*...joking.). She has a unique bond with every member in our family. With Grandpa she loves how he cuddles and sings to her. He makes some great sounds and the funnest faces. She enjoys being with him and I think it's pretty safe to say that the feeling is mutual.

Check out Vada and Jasmine's expressions. They look so much alike!

We had only been home for a couple of hours and so much had already happened. Spirits were high and we all took great joy in the fact that we were back together.

Home Coming

The moment we walked in to our house Vada knew she was home.

A smile a began to stretch from one ear to the other. The dimples in her sweet cheeks became prominent and her legs began kicking.

Her eyes lit up.

She began to babble.

She was to tickled to NOT be in the hospital. With in mintutes of placing her on the floor with her toys she attempted crawling. Only... I think it kind of hurt her, naturally.

She didn't cry she just pushed up, turned to me and said "Mama". She knew I would understand and I did.

Recovering: Vada's Repaired Heart

After heart surgery you can expect daily Xrays, at least for the first couple of days. Being on the children's floor the Xray machine comes to you in the form of a fire engine!

The Xray's are done mainly to see if there is fluid in the lungs or around the heart. At least that was the case with Vada. She did have a small amount of fluid in her right lung and because of that a new diuretic was prescribed and the lasix was canceled.

With in the first couple of hours Vada started to pee...and pee...and pee! Today she is one pound lighter.(Keep in mind she had gained around 2lbs with in 24-48hours from surgery.) Labs were drawn this morning just to make sure everything was balanced and she was doing well. The labs showed that her potassium was low, which is a side effect of the diuretic that she is now on. To treat this they gave her potassium through her central line and have just now drawn new labs to check the levels. If her levels have been corrected then we will be coming home today. We have already begun discharge procedures and are waiting to see what the blood work shows.

Vada will be coming home on three new medications, making a total of seven prescriptions and an added two vitamins. Her medications will be something that helps her maintain her potassium levels, the diuretic and one for her heart. All of these new medications she will eventually out grow or will be canceled. For now its all for maintaining her healthy repaired heart.

Below are two pictures of her latest Xray. I am sharing them so you can see what we are able to see. If you look at the other Xrays that I have posted here and here, this one doesn't look too different. That's because I am not showing you a heart that has decreased in size but I am showing you where her sweet chest wires are.

These four little circles are a small piece of her recovery. They will forever be a part of her now, a hidden reminder of what she went through.I think the fact that someone is able to do this surgery is amazing and then when you throw things like the Xrays in people often forget the importance or significance in them. I like that I get to see this and I like that I can share them with others. It's something that I wish that I could have seen from someone familiar before Vada's surgery.

Some of the things that I have shared over the past few days may seem a bit personal and most are. I am sharing them and have shared them because of the feelings of fear that I had prior to Vada's surgery. The unknown can be the worst in situations like this. I am only sharing what I have shared because I hope that someone else, someone who may be only a few steps behind me will find them and that they will find some sort of relief in them.

Friday, May 20, 2011

Recovering: Making the Rounds and Saying Good Bye

Vada's sleep pattern has not improved here in the hospital, in fact, it has actually gotten worse. Her days and nights have flip flopped. That's why when Grandma and Daddy got here this morning we were still sleeping! One of Vada's first nurses exchanged her crib for a regular bed. That way I wasn't straddling the crib to nurse Vada and so we could cuddle together. I sleep her with her during the night too, which is much more comfortable than the pull out couch!

It took awhile for me to wake up but once I did get my eyes to stay open Vada's nurse came into the room and helped us get Vada ready to go for a walk. The hospital has wagons that the kiddo's who are less restricted can use but they were all in use so we used our stroller.

Vada's still had to be monitored so we hooked her up to a cordless, battery operated machine and brought it with us. 

We walked around the hospital floor for a couple of laps and then made it to the play room. Im not for sure where those kiddo's were who were using the wagons, because there wasnt anyone out when we were, which I was grateful for.

Vada stayed in her stroller the whole time. Im still a little uncomfortable moving her too much and she seemed so cozy where she was.

We read books and worked on our spanish with Dora.

Grandma Suzie made sure to leave a mark so that others after us would know that Vada was there and Daddy entertained himself with some of the bigger kids toys.

Vada seemed to enjoy the change of scenery. I think that we all did. It was refreshing and it made things seem more hopeful, not that anything is really wrong, it's just a situation that we don't really want to have to be in, but are.

When we got back to the room Vada had her first solid food snack. A carrot stick and some pretzles. Im not for sure if she swallowed anything but she seemed to be starving even in spite of her nursing every two hours.

After her snack she had to say good bye's to Grandma because she was flying home to Texas. Vada was not happy about it and made sure her feelings were known but she settled down after a bit and played with her stuffed friends.

Today was a good day. I'm glad that we did not go home however. I really think that she needed today to rest and be monitored.

Recovering: It's Getting Close

It's getting close! Were coming home soon. (Knock on wood.)

The doctor's were ready to send her home today. There were a few concerns that kept her here another day. A nervous mother, me, being the top concern.

Vada has been filling up her diapers and her oxygen intake has been in the nineties with the exception of when she is asleep, then it dips lower.

Vada is off of everything. She has her central line for any needed labs and then for any "just in case" situations. For pain she is alternating between Motrin and Tylenol and she seems to be doing great!

The thing that seems to bother her the most is her teeth! That's right, our poor girls is cutting a tooth and a molar to top it off.

Today and tonight she has been alert and talkative. Right now she is sitting up in bed, babbling and playing. Its so nice to have our girl back.

It seems that we will be coming home tomorrow. I feel comfortable with that. I am a little nervous, but I know with the way she is right now, there is nothing more than monitoring that can be done here in the hospital. We will all be more comfortable at home.

Recovery will be a long process. I am sure that with everyday that passes we will see improvement and I cant wait! She will need to be secluded for at least six weeks. She can go outside on nice days and can be around her immediate family but other than that we are drawing a line. Her peditrition has already been contacted. We have to check in with him next week and his office as been notified with her needs. He as agreed to see her before other patients and to get her straight into a room when we get there. Its very important for her to NOT get sick! We will meet with the surgeon in a week and then the cardiologist in a month. If everything works out she should be able to start physical therapy back up at the end of the six weeks.

With all of that being said, we still plan on taking things day by day and slowly. It's the best way!