Being Heart Healthy

Last week Vada had a scheduled cardiologist appointment. Everything checked out well. She still has her small VSD and the leaking valve but is showing no signs and is having no symptoms of struggling from her heart conditions in any way. In fact, her cardiologist, Dr. Bramlett said she is "Amazing!" and he went on to say how impressed he is with her constant growth and successes. His amazement isnt because of her having Down syndrome, he has a lot of patients with Ds, he is amazed because of the obstacles that she has overcome and yet she is thriving and strong and she is constantly reaching her goals and moving on to meet new ones!

 I like this doctor a lot. He's very nice and he is so great to Vada but there is a time shortly after Vada's heart surgery where he kind of put me in my place and set me straight with God again and he has no clue about it...

It was during a check up, maybe a month or two after her heart surgery. Dr. Bramlett mentioned that Vada still had the VSD and the leaky Valve in her heart. I was floored, angry and shocked. I didn't understand why the actual heart surgeon hadn't filled me in on this huge piece of information directly after the surgery and I why I was just finding out about it all at that moment, weeks after the actual surgery. Most of all, out of all that I was feeling, I was terrified for my little girl and out of that fear I spit out a question asking why the surgeon hadn't "fixed" her heart when he was "in there" in there first place. Dr. Bramlett turned to me, looked me in the eyes and calmly stated that the surgeon wasn't God and wasn't capable of "fixing" everything or everyone. His statement stung but he was right and I knew it. Dr. Bramlett's reply has stuck with in many situations. I think a lot of patients or parents of patients may have been angered by his matter-of-fact reply but it was just what I needed. 

Yes, God creates all things perfectly in His image. Sometimes however, we want to "fix" or help when something isn't quite as right as we would like them to be, like for us with Vada's heart condition or when she was suffering with seizures. However, ultimately, it's still all out of my control as well as the doctors. Ultimately, God is the best medical Specialist available and He is the chief of surgery. He'll make the final call and I have faith in Him and in Vada, they are both so strong, stronger than I will ever know. 

Now, that I have rambled on and your all probably wondering what the heck I am trying to say... All is well. Really. Vada's check up went well. She is doing great and while she still has heart conditions that are of concern, they are not changing or getting worse or causing her any problems, so we are as happy with this check up as we possibly could be, (short of being told her heart had miraculously healed).

P.S. Check out how much Vada has grown since September of 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.

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.

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!

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.

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!

The Day Before

The day before Vada's surgery Justin and I dropped the girls off at school and headed straight to Peoria. We had an 11 AM meeting with the Cardiac surgeon. The day was long, with lots to do. After meeting with Dr. Fortuna (the surgeon) we had to meet with two other people from his office. The first was a woman who set up all of the lab work and tests that had to be done that day.

The next was a nurse who gave us a tour of the Cardiac ICU floor, which we have actually already been on, only the opposite side.While waiting for the nurse to come into the meeting room Vada had a good time being the God Daughter at the head of the table.

The day before surgery Vada needed to have labs drawn. She needed an chest Xray and she needed to do an EKG.

Daddy and Vada had a lot of fun playing games in between tests.

Daddy does a great job at airplane!

They even played at dinner.

Check out Vada's mad balancing skills!

Can you guess where we had dinner? ... That's right, Ruby Tuesday's.

Vada had lots of quality time with her grandpa...

... and both of her grandma's.

We all held her a little closer and a little longer the day before surgery.

Recovering: A Quick Update

Vada is still kicking butt and taking names but (and it's a small but) there have been a couple of very minor set backs. Her chest XRay this morning showed some fluid in her right lung, her urine output has decreased and she has gained a decent amount of weight. She came in weighing 17lbs-3oz and now weighs 19lbs-8oz. Many things can be the cause of the different issues, varying in different degrees. Over all, we think that it has to do with the anesthesia and the pain medications that were used during and after her surgery. These things tend to shut down or "quiet" the bowls and cause a backup of fluids. She was started on Lasix again and after not seeing any wet diapers she was changed to a stronger diuretic. Since that medication was introduced (earlier this afternoon) we have seen two very full diapers and have heard a lot of gas being passed.

Another concern is her oxygen intake. Vada has always sat in the low ninety's. Always. However, she is dipping in the high eighties, especially when she is sleeping or nursing. So, she was placed back onto oxygen. She is on the lowest amount that they can give so the concern is very minimal. Right now, she is asleep, her little nose piece is out of her nose and pointing towards her eyes. Her intake is sitting at 88%. The nurse doesn't seem concerned but I am going to fix her nose piece just to make it worth the tape stuck onto her sweet sensitive skin.

Yesterday, Vada was taken off of all pain medications and boy did she have a hard time later in the evening. Poor baby cashew. Last night, when she was clearly in pain she was placed back onto one of the stronger pain medication that she had already been on. She was given it again at five this morning and then at noon. Since then she has only had Tylenol and she is doing very well. It was so sad though, watching her be in such an extreme amount of pain.

Vada was awake when Daddy and Grandma were here but getting ready to leave and that was around 8:30 PM. She just recently fell asleep. So if you use your imagination you'll be able to figure out where I am about to go. The talk around the nurses station and in room 429 was that Friday may have been Vada's release date. Truthfully, as much as I want to bring her home, I was not comfortable with leaving on Friday. With Vada's new road bumps, Friday is off the plate. Which I am okay with! She needs time to heal and recover and I felt like she was being rushed. She's just a baby. Anyway, were being told that Saturday may be where it's at, but I am going to place my bet on at least Monday. Still, that's only six days post-op and we were told seven to ten days, so shes still ahead of schedule.