Great sats!

Even though its late & I should be sleeping since the girls are both asleep, I couldn't help myself! I have Vaeh on her O2 sat monitor once she falls asleep for the night. Lately she's been running in the low to mid 80's, and occasionally dips into the low 70's. Last night, she finally had a really good night. Daddy let me sleep in the bed vs. the couch & he kept her out here as she has been doing better in her chair rather than the bed. He said that she only dipped once, & she rebounded very quickly, so he didn't need the O2 at all! That's the second night in a row without any O2. So tonight when I turned the monitor on, I was quite suprised to see 94%! And that's with an open VSD! The monitor has been on for at least 2 hours now, and looking at it now she's at 92%. I've seen her hit 98% tonight, but it was only for a split second then she leveled off to the low 90's. I'm just amazed that we've come from barely staying in the 80's with oxygen, and now she's staying in the 90's without it?!?! She has occasionally dipped into the 80's tonight, but overall has averaged a low 90! That's my little spunky monkey!

Enjoying the sunshine!

Finally, we've had some good weather here in lovely ol' Ohio! Its been in the mid 70's all week, and I finally feel comfortable taking Vaeh out for short periods! In the picture above, Vaeh is taking over the wheel for Daddy in his big truck! I don't want her out too much, with the surgery now less than two weeks away. Still trying to avoid her coming down with anything. She is such an outdoor person. She smiles every time I open the door or the windows up, and gives me that look like "are we going out there?!" Especially when its time to go pick big sis up from preschool, her little legs start moving like crazy! When she finally is able to start walking, I'm going to have fun keeping her inside!

Just to update on all of our little heart friends: Elijah is doing well recovering at home! According to his mommy, he's having a little separation anxiety but who can blame the little guy! Emma, Addisyn, Ashcer & Karly are also all doing well & recovering quickly. Isaac just had a heart cath & MRI yesterday & all went well there, too! Please keep Stephanie, aka "The Champ" in your prayers. She just had open heart on Wednesday & is having trouble getting off the pacemaker. Overall she is doing fairly well, but her little heart doesn't want to beat on its own yet. So could you all say a little extra prayer for her, and all of these little miraculous wonders!

Check me out, aren't I cute!

Photo and video editing at www.OneTrueMedia.com

*make sure you turn the volume down on the photo slide show - the music will clash with the playlist at the bottom of the blog!

Counting down...

Today marks the two week mark until the next open heart surgery! I've already been going through a gammet of emotions - relief, fear, anxiety, dread - and they are probably just going to escalate from here! Nevaeh is actually doing quite well, not needing the oxygen nearly as much the past few nights. If she has needed it, it has only been for a little while & not the entire night! The bad part is that the regulator for the oxygen only goes to a half a liter. So if this puts Vaeh over her limit of 90%, I have to get up and turn her off . . . until she alarms that she is too low & then I have to turn her back on. So needless to say, I haven't been getting much sleep at all. Last night was by far the worst night. She had a rough night coughing, vomitting, etc. And she did have some need for the oxygen. I did get to sleep from 4:30 to about 6:30. Luckily Jon was able to come home . . . Daddy to the rescue! He let me lay down for a little while before Vaeh's therapy session. The thing that compounds the sleeping issue is that Vaeh hasn't been sleeping in her crib (so I've not been in bed, but on the couch) for nearly 2 weeks! She wasn't comfortable & was spitting up so much that she does better in her little chair in the living room. What we won't do for our kids!

I know that the next couple of weeks is going to 'd r a g' on. I am not looking forward to the waiting, or to the prospect of having to hand my beautiful little girl over to the docs for her next surgery. I've had such terrible thoughts lately that she doesn't make it out of this one & the thought of that terrifies me! I'm sure that I'm not the only 'heart mom' (as we with CHD kids refer to ourselves) that has ever had these thoughts, but I'm the one thinking them right now. I've encouraged other mom's in my situation that all will be fine & that God has their child in His hands. I know that that is exactly where Nevaeh is - in HIS hands, but it is so much different when you're looking in the mirror & trying to say those words. They don't come as easily for yourself as they do for others! Please keep us in your prayers, that everything goes according to God's plan & that we make it through the next month or so!

Also, just a little update on some of our heart friends! Addisyn, Ashcer & Emma are all at home & recovering nicely. Another little gal - Karly - just went home & is doing well, and Elijah just made it home today! Keep them in your prayers that their recovery continues to go well! Also, keep little Stephanie (aka "The Champ") in your prayers today. She's in the OR today for her third open heart, so pray all goes well for her! Thanks for checking in on us!

Movin' & Groovin'

Today was another therapy day here at the Walp house. Its so nice now when the therapists come as Vaeh doesn't start to cry the minute she hears a knock at the door. She almost looks forward to them coming, especially Barb who is her physical therapist assistant. She really seems to have finally bonded with her, offering her hugs & kisses! Today Barb set up the bolster so that it was on two cube chairs and sat about chest high for Vaeh. We were working on cruising along. Vaeh is actually starting to move her feet as if she's walking. There may be hope for walking before 2! She is actually starting to get brave with cruising along the bolster, going after a toy strategically placed just out of reach (sneaky therapists!). She went a total of about 2 feet today, which is like a mile for her chubby little legs! Then we worked on standing unsupported - sort of. Vaeh is very steady on her feet as long as she knows someone is holding on to her or she has a hold of something. Today, Barb stood her with her back side leaning on the bolster, so she had support, and then playing with her. Basically she tricked her into leaning out away from the bolster. She actually held her balance for a couple of seconds, until she realized that she was on her own, and then back against the bolster she went! Its so exciting to see her making such good progress, & actually enjoying her sessions. Such a contrast from even a month ago when she would cry (even scream to the point of turning blue) through the entire session. I'm really starting to dread her going into surgery, which is three weeks from today! I'm afraid of a lot of things happening, including loosing the ground we've gained in therapy. The summer break will be enough to overcome. That, and the fact that there's been a change in contract, so we'll have a couple of different therapists next year :( Hopefully we'll have better luck after her next surgery with everything!

Cardiology appointment

Today we had to go visit one of Nevaeh's favorite people (LOL), Dr. Butto. She seems to sense that he brings pokes & sticks with him. It was just a routine visit, and everything went well. He didn't even have them do an echo today, most likely knowing that she wouldn't be very cooperative & it would just upset her. They weren't able to get a blood pressure on her because she was so worked up. The nurse kind of irritated me. She would try to take it, and when it didn't work she would start the cuff up again. I'm no nurse, but I've taken enough blood pressures to know that even if she had gotten a reading it wouldn't have been accurate! Oh well, at least her sats were wonderful - 92%, and that was even while upset! She actually did fairly well with the EKG. I had her on my lap, and let the tech put the stickers on. I think letting her see actually what was happening made her a little more at ease! She fell lightly asleep until Dr. Butto came in, and of course woke up crying as soon as she saw him! Poor guy, what a complex he must have with her. He doen't even get in the door and she starts crying! Suprisingly he didn't even have them do a chest x-ray. He did listen to her, and said she sounded good! That put my mind at ease, as I've been worried how she sounded - a little congested. He said that he wanted to see us in 6 weeks, which would be about 3 weeks post op. They scheduled it for June 9th, as the 6 week mark was on Memorial Day. Wow, where does the time go?

Now, the next big thing coming up is her pre-op appointment in Ann Arbor on May 6th. I'm already dreading having to take her up there, and let them take her from us. I think that's the hardest thing I've had to do in my life, is let them take my baby back for open heart surgery:( It should probably be second nature since this will be the 3rd time, but it only gets harder I think. Hopefully this will be the last time we'll have to do it for a while!

Now, changing pace - here's an update on a few of our heart friends. Emma had surgery on Friday, and is doing fairly well. She's having some feeing issues, but heart-wise is on a path to discharge soon! Ashcer is doing well at home, as is Addisyn who had a very quick post-op in the hospital & was home in 3 days! Its amazing how many people I've come into contact with that are affected by CHD. What I find even more funny is that you don't hear of it until it affects you, and then its everywhere!

Beginning the surgery process

Today we received the pre-op instructions in the mail from the University of Michigan. We have to have Nevaeh in Ann Arbor on Tuesday morning at 9:00AM for her sedated echo, chest x-ray & EKG. We will also be meeting with cardiology & anesthesia to discuss/ update her history and go over any questions we may have. Its an all day process, so we are planning to spend the night. Chances are that she will be the first, and maybe only case on Dr. Bove's schedule for the day. For her previous two surgeries she was the first, I think mostly because they weren't sure exactly what all they would (be able to) do. Such is the case this go around, as their is a possibility of him working on her pulmonary arteries, in addition to closing the VSD & changing the conduit/ valve. The latter of the two are definitely going to happen as they are the reason for this procedure.
On a lighter note, a couple of our little heart friends had surgery themselves in the past week, and both are doing quite well! Ashcer made it home within two weeks time, and Addisyn just had surgery on Monday, and will possibly be home by the weekend. Check out their CaringBridge sites on the right hand side of the page. Just click on either of their names & it takes you directly to their site! Hopefully Nevaeh will follow in their footsteps, and have a short post op stay in the hospital, and then come HOME!!

Back on the oxygen

Well, being off of the oxygen was short lived. The past couple of nights, Nevaeh has needed a half liter some of the time through the night. She's not supposed to be below 75% now (it was 70%), nor above 90% if she's on oxygen. She had been doing really well, but then started to sound a little congested. Last night was particularly fun! (yes-that was meant to be sarcastic!) She did okay for about a half an hour, then she desated. So I turned the oxygen on. Over the course of the night she slept well finally. She hadn't been sleeping very well because of vomiting, so last night was such a blessing that she finally slept. Mommy, however, still didn't get a good nights sleep. At one point I had her up to 2 liters. Then this morning once she was out in the living room, she was sitting at 94% on room air!?! Sometimes I'm not sure how well the monitor picks up her percentage because she looks so good clinically (fingernails & lips aren't purple). I'm beginning to think the only way I'll get a decent night's sleep if either she or I'm in the hospital. So if anything will be nice having her in the hosptial, at least I'll be able to get some sleep! Hopefully after this final repair, she won't need the oxygen anymore since the bloodflow will finally be going in the right direction!

Making Progress

We had Nevaeh's IFSP(individualized family service plan) meeting yesterday. Its where all of the therapists involved with Nevaeh meet to discuss her progress and the plan for the upcoming 6 month period. She is currently being seen by occupational, physical, and speech therapies, as well as an early intervention specialist checks in on her occasionally. So needless to say we had a house full yesterday. In addition to the therapists, her service coordinator for Help Me Grow (a program here in Ohio for children 3 and under) and the coordinator for BCMH (Bureau for Children with Medical Handicaps - another Ohio program). Occupational therapy rates her as being about a 14 month level. She's rating activities like block stacking, putting toys inside something, etc. Physical therapy puts her about 8 months. I don't think that will take long to get her up to speed once this next open heart is past us! She's really been on the move the past couple of weeks. Speech really didn't place her at a "level" but are still working on basic feeding principles.

All in all I think she's making some really good progress here lately. So I'm kind of dissapointed about her having a set back with the surgery. But she is so much stronger now than she was so I'm sure it will be a fairly quick recovery! The main three therapies will keep seeing her over the summer, about 4 times, just to keep her in the loop. The early intervention specialist I asked to come only on occasion. Vaeh seems to do better with not having too many people involved, less confusion. So, all we have to do now is get past this next open heart!