Tuesday, November 9, 2010

Pro's at the Waiting Game

We have known that Vada has heart disease long before we even met her. Its was something that I came to terms with and had accepted very easily. What else could I do.

We were told before Vada was born different time frames in her life when to expect to have her heart repaired. The latest was next summer.

Next summer has come prematurely. Next summer is here. Or so we've been told.

We have been in and out of hospitals four times in the last month (counting our two trips to the ER in our home town). Each time for the same issues and each time we have been sent on home with her on a new medication, or a new dosage of an already existing prescription.

This latest trip to Peoria was a bit different than the ones before.

I called the Neurologist and then the cardiologist and I told them that Vada was struggling and that I was bringing her in. I asked that they call our ER to give them a heads up. Our ER doesn't treat Vada. They send her to Peoria. I figured if they got a call form a doctor from Peoria maybe the transition would be quicker.

After talking with the specialists I called Justin's mom and asked her to come over and sit with Vada while I packed us a bag and then take Jasmine to her house for the night.

I called Justin at work and explained what I was doing and why..., and he said that he was on his way home, he was driving us.

We had decided to cut out the middle man. It was a hard decision to make but either way there were risks involved.

We got to OSF safely and she was brought straight to a room, where after assessing her she was given oxygen. Other than our last stay and then when coming out of surgical procedures Vada has never needed assistance with her air intake and the only reason she was giving air the last time she was hospitalized was due to her being so upset.

(A quick side note for you parents who are in similar situations with heart issues... You do NOT give someone who has an unrepaired heart defect full air. I didn't know this until today. By giving full oxygen it opens up the lungs. With an unrepaired heart; opening up the lungs can lead to the lungs being "flooded" with fluid.)

After being brought up to the PICU from the ER we were given the much needed time our bodies were screaming for to rest a bit. Justin took the couch and Vada and I slept in the crib together.




Before this specific trip to the hospital we had an appointment with the Neurologist and the Cardiologist for this up coming Friday (the 12th; Justin's 30th Birthday) . Vada was due to have her ECHO then. However, since we are here now, they decided to go ahead and do it early. This is Vada's third ECHO since has been born and her sixth or seventh overall.

After Vada was born she had a ECHO done almost immediately. I was still recovering from the cesarean and had not had the opportunity to meet Vada let alone be there for the procedure. The second ECHO was done was a few months ago and I was so busy keeping Vada preoccupied that in return I was preoccupied as well. Today, I was able to really pay attention. The beating of her heart was beautiful. Watching the bird like flutters was like a piece of moving art. It was incredibly deceiving to watch. How could something so beautiful not only be so powerful, but also have something wrong with it?


Vada's heart issues has always held me in a cold place of fear. I look forward to hearing her heart beating with out the "machine gun" murmur. I look forward to not being so scared of all of the possibilities her heart defect brings but being able to eagerly anticipate the capabilities her heart has to offer. (does that make sense?)



Vada also had a chest Xray done. This was done to see if there was any fluid in her lungs as well as to see the size of her heart. Typically we go into a cold room that is separated from the part of the hospital that we are staying in and then Vada is placed in this upward seat that has these plastic wing like pieces that wrap around her whole body forcing her arms to be straight into the air. I'm sure its frightening for her to have to endure.

Today a lady came into our room hauling a huge red fire engine cart. It looked just like an actual truck. With a ladder and a real working bell the engine pulled up next to Vada's bed and just like that she was getting her chest Xray. The nurse laid the film under Vada then covered me up with a protective vest (I was laying in the crib with Vada at the time.) and just as quick as she entered she was gone.


The doctors covered all of their basis today when it came to doing tests on Vada's heart. Vada's last test was an EKG. It too was a simple test compared to past situations and Vada paid more attention to pulling on the cords that were attached to her than she did the person putting them on.

While I am grateful at how great the staff are here and how thorough the doctors are, I am a bit disappointed to say that I know nothing new except that there is some fluid in Vada's left lung. Anything above and beyond that is all one big assumption on my part.

The cardiologist that is on call this week didn't make it in to see Vada today. He made it into the room right down the hall from us however, but I have been informed that they had something going on until eight and that may have been the reason for his absence. Its hard for me to read into that. On one side it could mean that he is not overly concerned, which is a good thing. On another side, two weeks ago they discharged Vada after one night of observation so why are they keeping us for another night if there isn't something concerning them?

The nurse seems to think that we will "probably" be going home tomorrow and that we will be one of the cardiologists first stops. She also told me that the cardiologist usually make their rounds at 6:30 a.m. and that we should be seen by no later than 8:30 a.m. Hopefully what she says is correct and we have the answers we have been waiting for.

Well, it feels incredibly late right now, even though its only 9:30 p.m. I know many are wondering whats going on so instead of holding off on posting this I am going to go ahead and read through my mess of words tomorrow, and fix what doesn't make sense then. So please excuse any and all grammatical errors, I am sure that there are plenty of them..., there usually is.

Tonight I am grateful for an amazing God who created and then brought us Vada. I am grateful for the doctors and nurses who are helping take care of her and I am grateful for my family and friends who are saying prayers and lifting her up in her time of need. God is Good. He is faithful and he is here holding Vada in his arms, protecting her and giving her the strength that she needs. God has a plan for Vada and I believe that in his plan she will be with us for a very long time.

4 comments:

Janie Fox said...

I am praying. Stay strong.
(Annie's mom)

Brian Stipp said...

i'm glad i got online when i really should have been getting in bed so i can be praying for Vada tonight. ~beth

Deborah said...

Praying for Vada! I hope they can schedule her repair sooner than later so you can move past that. You are such a strong, beautiful, attentive mother! Vada has the best family to walk her though this challenge.

Annie @ The House That Jade Built said...

Oh Tara I have been praying for you and Miss Vada like crazy. I hope the cardiologist brings you all the answers you are needing today, & I completely understand what you mean that you look forward to the day where her heart is repaired & you get to see what it's capable of. God is great all of the time & I know he'll keep you and Justin strong while you wait for news!