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.

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! 

I {Heart} You Too

About a week ago I received a package from Justin's sister Lindsey. In it was an adorable long sleeve black onsie with a great big red heart on it. Plus, the onesie came with matching stripped leggings! I was super excited when I saw what had come for Miss V.

There was a third item in the package. A little box with this in it...

I don't wear much jewelry due to the fact that I often have Little Miss in my arms... and she love, love, loves pulling on anything extra attached to me. However, I brought this necklace with me and I have worn it all day and I will continue to wear it throughout this stay. Thank you Lindsey. We {heart} you too!

Annette, Justin's mom did some pretty special things as well. For the girls she got them each a heart shaped sucker, a necklace shaped as a heart and poem that was attached to a heart as well. The open heart represented Vada's "holes" that would soon be and is now fixed.

For herself and for my foster mother she bought heart pendants.

Aren't they beautiful? (The necklaces and my mom's)

As a little something sweet she made these cookies. I cant resist her baking...I ate three of them! Can you say oink oink and good bye skinny jeans...not really, but geezz.. how could I resist them?

Finally, actually this probably should have come first...right after Vada was taken back to the OR Annette came to me and said that Vada was going to make it through with flying colors. She said that she knew it because Vada knew she was loved and that nothing is as strong as a mothers love, my love for Vada. She then handed me a stone inscribed with the word "love". Later Justin showed me the stone he had received, "Hope".

Annette, thank you for all of these little tokens... for all of the special things that you do. We {heart} you... very, very much!