Sunday, February 27, 2011


When it comes to kids, there are so many milestones. There are the 'typical' ones that all parents look forward to: the first smile, sitting up, pulling up to stand, walking, amongst others. Each one is such an exciting experience in the life of a child. Both for the child & for the parents! Its something I always worried I would miss with Gabie. Some I did, but a lot of them I was blessed to be able to see! Her first steps, just before her first birthday, we were actually able to catch on video... I still tear up a bit when I see it ;0)

The night Nevaeh was born, I was running all of the 'typical' milestones through my mind. I can't wait to see her roll over, stand up, walk. Unfortunately when she was about 12 hours old, those milestones took a back seat to a new set: upcoming surgeries, procedures, medications & doctors visits. Once a child, a family in fact, embarks on their journey in this crazy world of CHD's, things take a much different path. Our journey included changing Vaeh's feeding tube & learning how to feed her with it, monitoring her oxygen & giving her O2 via a cannula, and MANY medications. Those medications began within the first day of Nevaeh's life. At one point she was on as many as 14 different medications every 2 hours beginning at 6 AM and ending at midnight. I would have syringes lined up at the sink for each of her different medicines and dosages, and a list taped to the cupboard so that other family members that came to help could keep track.

One by one, we were able to take away a syringe when the doctors decided to discontinue one of her medications. As time passed, the line up of those syringes became smaller. Its been a couple of years ago now that we were able to stop her lasix. That left her revatio (aka: viagra) which she was on for her Pulmonary Arterial Hypertension. Of course, she also has her nebulizer treatments that we still have to do prn (as needed), but the revatio is the only regular, oral medication she has been on since her lasix was stopped.

She started this medication almost exactly two years ago, to the day (toward the end of February 2009). When she started taking it, we had quite a time getting the approval for it as it is quite an expensive drug. Then once we got the approval, we found out that for the first six months, the pharmacy had been dispensing an incorrect dosage - half of what she was supposed to be getting! That was not a fun experience to go through, but we were finally able to get her on the correct dosage. It was about six months ago that we began to lower that dosage since her PA pressures had begun to come down. The hope was that if we could get her pressures to come down & stay down, without the medicine we could stop it.

Back in November, we again lowered her dosage for the second time to 2mL's ( half of the beginning dose). On February 14th, we again saw Vaeh's cardiologist for a follow up. Again, her pressures had maintained at a low enough level that Dr. Butto said to lower her to 1mL for two weeks, & then... are you ready for it?!

STOP HER MEDICATION!!!!!! Yep, that's right! We are going to stop Vaeh's very LAST medication. I am sitting here in the living room, waiting for 11 PM to roll around so that I can give this...

for the LAST time!!

This last dose of her medication begins a "first" for Nevaeh... this will be the very first time in her life, other than the first 12 hours of her life, that little Miss V has not been required to take any medication!!! I am going to be able to go to bed at 8 PM if I want & not have to stay up so that I have to wake her up to give her some nasty tasting medicine... WOO HOOOO!!

She is scheduled to go back to see Dr. Butto again on March 14th for a follow up visit/echo to check her pressures without the medication. Then we'll probably head for a trip to the cath lab to get a true measurement of her pressures off the medicine. Beyond that, I'm not sure what life is going to hold for our CHD warrior!

I am so looking forward to this next stage of life for Vaeh. Of course, we will always have to watch her, always have to see Dr. Butto, always be on the look out for anything abnormal. That is the life of a CHD child. Maybe we will be able to go longer than 3 months between visits. Maybe six months or, dare I say it? A year?! We'll just have to wait to see what this next chapter holds for us!

Thursday, February 10, 2011


Usually I don't get too nervous when it comes to Vaeh's appointments. I don't really remember being any bit nervous with her last appointment back in November. Its just become such a routine thing, if you can imagine that in this world of CHD.
But the past couple of days, those pesky nerves have been creeping their way back into my head. Vaeh's got a cardiology appointment coming up... during the last appointment he said that we would be heading to the cath lab probably in the spring.... are her pressures going to be better this time, too? Will they have gotten worse & he'll want to go to the cath lab sooner? Will he want to wean her off the drugs completely this time, or in another step? There's always such questions that crop up with these appointments. I know that every heart parent goes through these emotions/questions with any doctor appointment that comes along, even if their child has been doing absolutely wonderful!
I was sitting in the dining room with my Mom tonight discussing my nerves as the girls sat at the table cutting paper. One of Vaeh's favorite things to do is to cut paper... its her "homework" she tells me! I told my Mom how its so easy for me to slip into that "everything is fine" mode. Vaeh looks the picture of health these days. She plays with her sister & other kids, she goes to preschool four days a week. She lives each day of her life to the fullest... all the while being a child who lives with a CHD.
Its hard not to let my mind wander back to the days when I worried every day if she would survive. I used to check her in her crib several times a night to make sure she was still breathing. (Occasionally I still peak in on her just to be sure...) Here lately I even worry about her complaining of her leg hurting. Is it growing pains? Is it something vascular? Since we have a fairly significant family history with blood clots, & she's had some difficulty with that, that one crops up pretty regularly. When we do go back to the cath lab, will it be just a routine cath or is he going to come out & say that she needs another OHS soon? I really hate this.
I know that her appointment is going to go well! I have to believe that, or otherwise I think I would drive myself crazy. I know we're going to breeze through this one because she's doing so well! I just like to 'vent' my crazy feeling from time to time... so thanks for letting the blow whole let loose! LoL
Praying everyone is doing well! Remember to promote awareness this CHD Awareness week & always!