Super Grandparents to the Rescue

Vada is on a list of restrictions for at least three more weeks.Which means no visitors for at least that long. We want them, believe you me, we all want visitors. Heck, I am ready for a party! However, I would rather be a slightly lonely Mommy for a couple of more weeks and have a fully healthy baby verses what could happen if someone were to get her sick!

Since we cant have visitors it comes with out saying, that we cant really take Vada anywhere either. This has made a very long home recovery. Summer is here and it is Hot, Hot, Hot outside, which means that taking Vada outside to play and explore is also limited. Waiting until the sun goes down is fine and dandy but then the bugs are out and they are thick this year and hungry for her sweet baby thighs-which I am not inclined to share!

Anyway, Vada was a bit bummed when she found out that Jasmine and Kiliegh both have a summer long pool pass to a nearby private pool. She wants to go swimming too! So, I got on the phone and checked things out with her doctor and then I called good O' Grandma.

Turns out that while taking baths where Vada's incision would be submerged is not okay, nor is it okay to be around all of those people that are at public like pools, it is okay to be in her very own shallow pool. Good thing Grandma and Grandpa had just what we were looking for!

Really, they saved the day..., maybe even the summer as we know it! They are pretty fantastic! I'm being serious..., just look at the smiles on this little girls face! She is thrilled!

Thanks Grandma and Grandpa for making Vada's recovery a blast!

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!

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!

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!