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: Whats What

7:35 AM

What a night!

If I would have known that yesterday was going to go as smoothly as it did I think that I may have worried a lot less!

However, nothing is guaranteed and since I am a professional worrier I probably would have continued to stress myself out either way!

Vada is my own little super hero. Ill call her a Heart Hero. (Insert super hero music here.) She is stronger than strong and recovering faster than fast. She is the A.M.A.Z.I.N.G. Heart Hero Girl!!!

Sleeping with her mended heart bear that was a gift from the hospital staff.

She looks so beautiful sleeping in the hospital crib. Peaceful. If it weren't for the tubes popping out from under her blanket, the oxygen tube coming from her nose or the Somenetic piece stuck to her head, you wouldn't know that she just had a major operation done. Her color is beautiful and her skin looks like porcelain. She looks like an angel. I love her so much!

She is doing well today.  She has nursed seven times since her operation. I have even held her in my arms. Talk about an awkward mess! I was so nervous, but having her settled in my arms was comforting. Right now, as I am typing this I am laying in bed with her sweet body nestled into mine. I should be sleeping and would be but I am waiting for one of the social workers to come in with paper work, but thats besides the point...the point is or was, I am laying in bed with my baby!

5:35 PM
A couple of minor things have occurred. Not real set backs, just teeny tiny bumps. She was placed onto a temporary pace maker that will give her heart just a little push when needed. Funny thing is, since shes been on it she hasn't really needed it, which is a good thing! She has also been put back onto  Lasix. Her chest is a little noisy.

Something that we are looking forward to is her drain being removed. Her drain is located directly below the surgical incision on her chest. With older children and adults this is the thing that they most complain of when it comes to pain and discomfort. So were eager to have this gone for Miss V. The plan is to remove it when she wakes up again. She has been removed from a lot of her pain medications/sedatives and is maintaining-seizure free (knock on wood, toss some salt and pray to God) on Tylenol and comparable medications.

All of the Cardiac ICU patients are typically assigned to two nurses and each nurse has either one or two patients at a time. This is Vada's nurse for today. Her name is Ann and if I haven't already mentioned this...she rocks!

10:55 PM
So far, we have been blessed in the nurse department. Yesterday our day nurse was as sweet as they get and it turns out that she has a six year old sister who happens to have Down syndrome which gave us lots to talk about. Yesterday's nurse practically never left the room or stopped working on different things, which is expected when your maintaining a patient who has just gone through a major operation like Vada has.  Tonight's nurse, Ashly, has it fairly easy, Vada has since been removed from practically every tube and medication and is over all maintaining herself. Therefore, were not having much interaction with her. We see her though. She's there, sitting at the window in front of Vada's room. Always there... and if not, she has a replacement...always. So, even though Vada is doing well, I find great comfort in knowing that she is still being monitored so closely.

11:40 PM

A little earlier I requested some medication for Vada. On top of this surgery she is teething and seems to also be having some stomach/gas issues which I was told is a common side effect with one of the medications that she was on. So Ashly came back in and gave her some IV meds. It took about ten minutes for the drug to kick in and Vada to fall asleep. She is awake and alert now. She just nursed and acts as if she is considering another nap. With Vada being up and alert now Ashly came back in to check on her. Turns out Ashly is a pretty nice girl too. Just a little less sociable as our other two nurses.

Anyway, the purpose of this was to give an update and I wanted to show you a what everything was that you see on Vada in her early post-op pictures. I thought that maybe some of you who are awaiting surgery may find it helpful to see and know what to expect.

What your seeing in the next two pictures is one sleepy baby. No longer heavily sedated, but sedated none the less. These were taken this morning, so around 20 hours post-op.

The patch going across Vada's forhead is called a Somanetics and it messures the cerebral and peripheral circulation. Its usually on for about twenty-four hours. She has an oxygen tube in her nose giving her what is called SimpleOxygyn. Her incision is the longest vertical bandage and her drain tube is directly underneath it. If you look at the right side of her belly you'll see a white/gray coil of wires under some tape. There is another coil on the opposite site that is yellow. These are her pacer wires. They are there in case her heart begins to beat at an irregular rhythm. Which her's did and she is now hooked up to a temporary pace maker. However, the nurse said that while her being hooked up to the pace maker is not hurting her, its not helping her either. So she should be coming off of the pacemaker in the morning.

She has a Central Line in her left Femoral Vein in her left leg. In her right leg she has another central line in her femoral artery. This one will be the first of the two to go first. The central line that is in the vein will be in until close to discharge...like that day and even up until the last hour or so before discharge.She has a foley catheter in to measure her urine output. That's to make sure that her heart is working well with all of her other organs and that her kidneys are doing their jobs. She has a pulse ox on her left toe and in this pictures she was getting nine medications on top of her seizure medications.

It's all a bit overwhelming, but less than we imagined.

The next three pictures are Vada's most recent pictures. I was able to hold her today for the first time around three-ish. Up until that point I had been straddling the crib to nurse her. She felt awkward in my arms and I was so scared of hurting her but at the same time, I loved the awkwardness, only because I was holding my girl.

The next two are the most recent being on an hour or so old. She has almost everything disconnected. She is off of all heavy medications and is on something for pain that is compared to Motrin. All of the wires that your looking at are hooked up to the central lines or are monitoring devices. Like I have already mentioned the temporary pace maker and the leads should be removed tomorrow. The catheter has been removed and the central line that is in her artery should also be removed tomorrow.

All of the nurses including the surgeon are saying the same thing about Vada. Never, NEVER have they seen a baby bounce back this quickly. N.E.V.E.R.! They said that if your going through this type of repair that those who have Down syndrome always bounce back the quickest, but never like this.What's that mean for Miss V? It means they think she may be discharged on Friday!!! If she continues to do what she has been doing then they will be sending her home! I'm nervous! I'm scared! I cant believe it! We will just let time tell. Friday is only four days after having major heart surgery, so we will see but WOW! 

My Bike

I had the Retroglide for a total of two days before returning it to the store we purchased it from. It was a great bike and I like it even though I did return it. The cruiser was kind of a small glimpse into my inner personality. I liked it's look and the way the handle bars felt as I was..., well, cruising along.

The problem was that after we purchased the bike I became practical. The cruiser only had seven gears and it was a pretty heavy bike alone not to mention when hooked up with the Trailer. I rode it around our neighborhood the moment we brought it home even though it was a pretty cold day.  I realized with and with out the trailer attached, switching the gears made no difference. It wasn't getting any easier for me. I'm not saying that the cruiser is hard bike to ride, its not. It's just a different kind of bike than im used to. Not to mention I am pretty out of shape to begin with.

Justin called me Monday morning on his way home from work and said that he was going to go look at bikes for himself. This was my moment of truth. I was overwhelmed with nerves but I felt that I had to try and I told him about my concerns and asked if we could attempt to return the bike, or even exchange it. There was another bike that I found at the same store that I found the Retroglide at and I thought that it was a better purchase for me.

To make a long story a little bit shorter, we returned the Raleigh Retroglide and purchased another Raleigh, this one is a Venture 3.0. Its a great bike with twenty-one gears and a lot less weight to it. Plus, its pearl white, which is a choice color for me.

The guys at Healthy Habits were amazing. They helped Justin bring in the returning bike from his truck. They took the bike seat, the pedals and the grip handles from another bike and put them on this bike (because I thought that they looked better) and then tuned up the bike I now have. They were not rude or short because I had created more work for them to do they were a great group to do business with and I recommend them to any and everyone who are may be in the market of purchasing a bike.

We did not purchase the Burley Bee trailer because it was too expensive for our budget right now. Instead we settled on a nice option made from Instep. Yesterday, Justin put it together and we fitted the straps to Vada.

Today the weather was decent and Vada and I broke it all in. I cant imagine how I must have frustrated not only the guys at the bike shop but also Justin, but im glad that I spoke up. Without doubt this was a good choice for me.

Junior Achivement-BizTown Monday

Today Jasmine had a field trip to our local Junior Achievement building where she (and all of the other fifth graders from her school) would be doing a simulation of what its like to have a job, pay bills and run a city. A City known as Biz Town. Jasmine has been extremely excited about this trip. Its all that she has talked about over the last several weeks.

We have known about the field trip for quite a while now. When the papers first started coming home with the information and volunteer requests I figured that it was something I could easily do. I had a couple of months and I assumed that Vada would be eating solids by the time the trip actually came around. Turns out I was wrong. She isn't eating solids and she is not drinking from bottle, sippy or regular cup so being a volunteer was going to be a difficult thing to do. To top things off I had missed the four hours of volunteer training. Needless to say, I was very, very nervous.

This morning, before I left I really wanted to come up with some sort of excuse as to why I could not go, but nothing would be justifiable. The thought of letting Jasmine down was making me feel incredibly guilty so I threw my worries aside and I went. Luckily, Justin was home and he was so easy going and understanding about the whole situation. Justin and I had decided that I would nurse Vada before he dropped me off at the JA building and then when she needed to nurse he would call my cell and bring her to me. I would then take my break, nurse her, then return back to Biz Town. It was more than we had planned for, but it would work.

 It turned out that he did end up bringing Vada, but it was so busy that Vada didn't want to nurse. I ended up talking with Jasmine's teacher and explained the situation to her. I asked if she was okay with Justin and Vada hanging around, just in case. Again, luckily, she was sweet as sugar and had no problems with them joining in. In fact, she gave Justin Biz Town cash that he used to help other businesses pay off their loans.

 Jasmine worked in the cafe where she served drinks and popcorn, cleaned and managed the money. She also had two paychecks that she deposited into her own Biz Town savings account. 

My store was the Variety Store which I helped three kids run. There was a CEO, CFO and a sales manager. My group sold items to pay off their business loan. For awhile it was a little sketchy and I was concerned that the loan would not be paid on time, but they really stepped up to the plate and not only paid off the loan on time, they made a profit!

 Biz Town was such a fun thing to do and experience. Each and every child had a place. They had a job and a purpose. Like in the adult "real world" they learned about responsibility. While it was all fun and games today, it was also a small glimpse into the future for them. What an amazing adventure they will all have.

I am so glad that I have such a supportive husband and such a great baby. I am grateful that Jasmine's teacher and the people who run JA Biz Town were understanding to our situation and allowed us to all be there. If it weren't for everyone's compassion I would not have been able to do this and I would always have the guilt of not following through on something that I had told Jasmine that I would do. I have missed so many school functions over the last two school years and I am thrilled that this was not one of them!

More Good News

After Vada's last {NORMAL} VEEG we were still concerned that something was going on that we had not yet identified. Another mother mentioned that Vada's physical actions (in a video that I posted in "What Vada's Seizures Looks Like") resembled her own daughter when she was having Silent Reflux. So I talked with Vada's GI Specialist (Dr. Yaseen, who is amazing!) and he lined up some tests.

The first was an Barium Swallow test. Which was an out patient procedure that consisted of Vada drinking some liquid while being X-rayed. That test came back to be "normal".

The next tests were inpatient and done throughout an overnight stay. She had an Upper Endoscopy as well as a Esophageal pH probe placed and a biopsy of three areas. (Her throat, stomach and her Duodenum.) She also had a scope done to visually see the area staring at her throat and going into her intestines. After that was done a small device was placed in her throat, right above the opening of her stomach. The device was hooked to a small box that recorded the levels of acid for a twenty three hour period.

{Vada in her hospital gown and sitting on the hospital crib, before surgery}

{Justin and Jasmine stopped in to visit. Justin was on his was to drop Jasmine off at his parents because he was working the night shift and thought to bring me dinner, he's a sweet, sweet man.}

{Vada a few hours after surgery. Over all she did very well. I requested Tylenol or ibuprofen for her pain once over the night and then again in the morning, which seemed to really help and she only pulled the probe out once.}

{This is one of my favorite faces that Vada makes. Every time that she does it, I smile!}

We went in on a Monday and was released on Tuesday. Vada seemed to be uncomfortable and sounded raspy until Friday and then today, we met with Dr. Yaseen to get the results.

Vada had two spikes of her levels during the whole twenty three hours. Her numbers were usually between a five and a six when they should have been a seven or higher but it's not considered Acid Reflux or Silent Reflux. Dr. Yaseen said that the biopsy's all came back "normal" as well.

I am still curious as to why she swallows the way she does. I wonder if it is because of her tongue? Maybe she does need vocational therapy (which I am getting a referral from her pediatrician for)? Maybe that's why she will put food in her mouth but not swallow anything. She wont even swallow juice. Just breast milk and only from nursing. She wont take a bottle or sippy. So maybe she is just stubborn too? She doesn't do the odd movements that I recorded a month or so ago, so that could have been the ACTH getting out of her system and her adjusting...? Who knows.

What I do know and now feel comfortable putting into words is that Miss Vada is dong well. Beyond well, she is doing great! It's an amazing feeling to be at this point with her She is almost a year old and finally we don't have to worry as much. We get to enjoy our baby and not be so scared.

The best way to describe things in our home, is that we are being aware. We're aware that Vada has heart issues and were aware that she has Epilepsy but were not allowing those things to overcome the fact that she is here and doing wonderfully.

Praise God! Again, he has answered all of our prayers! What an amazing God we have!