Friends That Pray Together

Isaac and Kathee are two of our closest friends. There are not enough words to describe what they mean to our family. We have laughed together, cried together, worshiped and praised the Lord together. We have watched our families grow in numbers together and exchanged parenting advice on the different do's and dont's together.

We have many friends, friends who at this moment are working in the background to help us make this time easier. We have the Miners who let my oldest daughter stay at their house for the first two days of this journey for Vada. Steve, who has picked up and dropped off the girls for youth group. Clark who took care of our dog when no one was at home and many, many others who are praying and who are asking for prayers. We are blessed to have each and everyone one of you in our lives and we are so grateful to call you all our friends.

I dont have many friends outside of our church family who are comfortable in themselves and their religious beliefs to come right out and ask to pray for others. I personally, think that prayer is a wonderful gift. However, I too dont always ask to pray and going to the Lord, first, is something that I am still working on.

Isaac and Kathee has taught us both a lot about prayer and a lot about going to Christ before anything or anyone else.

Someday, Vada will know the power of prayer. We will tell her of her many journeys. We will tell her about all of the people who prayed for her. We will teach her as well as the other girls that its not just family members who pray together that stay together, its friends too. Someday she will know that she was strong first through Christ. I look forward to that day. It's going to be pretty special.

Last night Isaac and Kathee came to our house. We planned out the next couple of days, talked about life in general and prayed together. We prayed for Vada, for the surgeons, nurses and medical staff. We prayed for Justin and I as parents and Jasmine and Kiliegh as Vada's sisters. We prayed for strength and healing.

The day of surgery Isaac came to sit with us and wait. His humor really helped make time pass by quicker. Justin and Isaac really feed off of each other, which made great company for Justin and great entertainment for me. I was grateful for Isaac's presence.

Isaac and Kathee have two small children so they came in shifts. Kathee came the day after surgery. I have shared many of my deepest fears of loosing Vada over the last two years, with Kathee. As a mother she could understand and as a close friend she could relate. It felt good standing at Vada's crib side with her. We watched Vada silently for a long period of time, but I knew that Kathee was rejoicing inside just as I was.

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! 

Recovering

Vada is one amazing girl!

Over all she was away from us for about five and a half hours. Right now she is pretty sedated and resting. When they first brought her up to the CICU she had tried to roll over twice, so more medications were given to her. She is breathing on her own and everything is stable. Twice she has opened her eyes and turned towards me. One of those two times she reached for me and placed her hand on my lips. God I love her. I dont know what I ever did to deserve such a gift but I am so grateful for her.

She didn't have any problems during the surgery. NO SIGNS OF SEIZURES, but that is still in a gray area due to the fact that she is so sedated. Were hoping that the stress on her body wont trigger anything. So far, so good! One thing that was unexpected was that they found her airway to be slightly narrow. Its not something that I have ever been told and she has had anesthesia a few times in the past. No one seems to be overly worried about this, so for now, it is just an extra piece of knowledge.

The nurses put these frilly green socks onto Vada's hands so she wouldn't scratch herself or pull on the wires. Cute, huh.

 Everyone has gone on with their day, there's not much that they can do here. With only two visitors allowed in a room at a time and a mother (that would be me) who wont leave it even to make room for another family member..., well, lets just say everyone's options are a bit limited. Justin's parents have headed back to the QC, they are also helping us with my older girls so going home tonight was always the plan. Justin and our friend Isaac are driving back to the QC as well. Isaac to go home and Justin to pick up his dad's truck. He'll be turning back around and heading my way again tonight. We just had to fix our vehicle situation. My foster mother went back to her hotel room and once Justin gets back into Peoria he will pick her up and we will get together for dinner.

I am preparing for a nap. I am so exhausted! Now that I have seen her, touched her, smelled and kissed her I can relax and breath a bit easier and I feel my body turning to putty as I write this. I hadn't planned on updating at this point, just because I am that tired, but I am so excited that Vada is doing so well that I had to take a minute to share the news .

The surgery is over, but the next couple of days, tonight especially, are the tough ones. So please continue to pray for our sweet girl and I will continue to update as things progress.

I just wanted to thank all of you again. To everyone who prayed, who took the time to lift my sweet angel up in your prayers, thank you. To those of you who wrote something in regards to her and today's events, thank you! To those of you who left wonderful, encouraging comments and messages, thank you. And to those of you who are silent and unknown but still praying for Vada and our family, thank you! The power of prayer is absolutely amazing. The power of friendship and love through Jesus Christ, is amazing and we have felt your love throughout the past couple of days and especially today. You are all amazing and I am thankful for each and everyone of you!

She Caught Croup

Last night as Justin and I were catching up on season 4 of Ugly Betty I heard a raspy noise coming from Vada and Kiliegh's room. I paused the show and listened for a moment. Sometimes, after giving Vada her medications she sounds this way. I told Justin that was probably what we were hearing. Instinct told me that it was more than that, but I waited.

The next couple of hours were tough. Vada was having a difficult time falling and then staying asleep . She was fussy and raspy and full of coughs that were clearly begging for full breaths of air. Around 4 A.M. I took Vada to our room, woke Justin up and handed her off as I began packing her a bag.

Half an hour later I pulled into the closest hospital parking lot. I sat for a minute contemplating the situation. This particular hospital didn't have a childrens floor. If Vada would need to be admitted they would have to transport her to another hospital by ambulance. I glanced back at Vada. She was sleeping better now, in her car seat, than she had been all night and I knew that the extra five minute trip to a hospital that did have a childrens floor would be better now verses taking her in an ambulance later.

Vada was never admitted to the Children's floor. Our stay consisted of 6 hours in the ER. Over all and compared to recent hospital visits, 6 hours was nothing to complain about.

Vada did show signs of struggle and her pulse ox was sitting at around 85% so she was giving a breathing treatment and a dose of steroids to open up her air way. At first they wanted to give her oxygen but with her heart condition(s) giving oxygen can sometimes cause more damage than it can good. (Something that I had learned during one of our more recent stays in Peoria.) When the treatments showed no signs of helping, the lab work began and she was given a chest Xray. While waiting on the results of everything a second breathing treatment was administered. That treatment really seemed to help and she was able to rest. I was too.

Vada and I had been laying down for about twenty minutes when in walks Justin and Kiliegh. It turns out that Justin had been trying to call me, but the battery in my cell had died. Since I had no news to give on Vadas condition, I hadn't attempted calling him. I never knew that my phone was off.

Justin, had become so nervous that he came looking for us. His first stop was also mine and after finding out that we were not at that particular hospital he eventually made it to the one that we were in.

While I was very close to falling asleep at the moment of their arrival I welcomed their company. Justin has always been a very calming aspect of my life. When I am in need, he is there. Sometimes, he will mess with me to the degree of annoyance, but its intentional, I think and either way, he has served the purpose that he sat out to achieve at that very moment. Usually, it's to help get my mind of a particular issue.

Kiliegh's presence was nice as well. She has a fear that her and I share more than she will ever be able to understand at this point in her young life. The fear is of loosing Vada. For Kiliegh to be here, in the hospital, on this occasion was perfect. Vada was already doing much better and this would prove to be a non frighting experience for her. She needed this experience, as odd as that may sound.

I was hoping that this trip to the ER would ease some of Kiliegh's fears. I even tried to make it fun for her. We watched Sponge Bob and then her and I went to the little cafe on the upper floor of the hospital. On the way there we skipped down the long halls while holing hands and singing a little song. It was fun. I enjoyed our moment together and I think that this was a good experience for her. As good as a trip to the ER can be.

Around 11A.M. Vada was released with the diagnosis of Croup.

We are home now and Vada is doing well. She is a tough baby who in general seems to be content with her life.

Right now, I have just laid back down on a bed that I have made for myself on our living room floor, (which is a whole other story). The humidifier in the back ground seems to be singing me a personal lullaby. Vada's musical fish tank is still playing the tune which has put her back to sleep and has automatically shifted it's volume to low. Soon the house will be filled with silence and I welcome it with anticipation. Sleep couldn't come fast enough at this moment.

Tomorrow, I will take her to see the pediatrician as a follow up from today's visit at the hospital. I pray that she is able to fight this one off. It seems as if she is doing just that.