Well, this is how I'm keeping my sanity over the next week. By posting on the computer & doing little things around the house I'm trying to keep my mind off of things! We now have 8 more days to go until our trip to Ann Arbor! So far, my nerves are holding their own suprisingly better than with her two previous surgeries. Then again, its only 8 days; we'll see how I'm doing by this weekend!
Last night Vaeh had another good night. Her sats continue to do well, although not quite as good as yesterday, but still very good! The other thing is that she has actually been sleeping in her crib, which means that Mommy gets to sleep in her bed vs. the couch! Thank God! Today she is also tolerating her feeds a little better today. Yesterday was a little rough, but we made it through.
I was checking in on our heart friends, and Karly's page was updated. She is still doing well, but her Mom posted today that another little girl they met in the hospital (also named Karley!) is in surgery right now for a heart transplant! Amazing what they can do these days, isn't it?! So please say a little extra prayer for Karley & her family, as well as for the donor family! They are all on a roller coaster of emotions right now & pray that God comforts them & brings them all through this journey!
Another little friend we've been keeping tabs on, Stephanie aka: The Champ is still on the external pacemaker and last I checked she didn't have any activity without the pacer. So, again could you all send up a little prayer for Champ & her family? They are believing that she will not need the pacemaker & her heart will beat on its own, so we're standing on that with them!
Thanks, again for checking in on us. Our friends & family mean the world to us, and without all of you we would not be able to make it!
Tuesday, April 29, 2008
Another day closer...
Monday, April 28, 2008
Day out of the house!
Things are going well in the Walp house tonight. Vaeh has had a pretty good day overall. I had a doctor's appointment in Lima today, so Gabby stayed with her cousins so she could play, and Vaeh went with me. Its so much easier to just take her with me vs. finding someone comfortable enough with her to watch her. So we headed to Lima this morning, and the poor little thing cried so hard at my doctors appointment! I think she thought she was going & not mommy. I also had to have a blood draw & she fussed there. In the back of my mind I'm thinking "Oh honey, your turn is next week:(" So after all of that, we went over to the outpatient therapy department at the hospital where I used to work. We ran into several people that I worked very closely with for 8 years - like a second family! It was so nice to see them & let them see how good Vaeh is doing! They were all quite amazed at what all she has been through in her short life, as are we on a daily basis! After leaving the hospital, we headed back to Wapak & stopped in where I had worked at the time I had Vaeh. Sandy (my former boss) was so glad to see us, & impressed with how well Vaeh looked both physically & developementally! It was so nice to be out and about for just a bit. It made it feel somewhat normal! Then we headed to pick Gabby up, which she was unhappy about. She, of course, wanted to stay & play. It was a little better when we reminded her that she will be spending the night with them while Mommy & Daddy are in Ann Arbor with sissy! Coming up all too soon!
On another note, please say a prayer for Champ (aka: Stephanie), one of our little heart friends. She is doing better, but as of this morning was still completely dependent on the external pacemaker. From what her page said, the decision about a permanent pacer is coming up soon, & they are all still praying & believing that her little heart will pick up & beat on its own before they have to put the pacer in! So, please send up a prayer that her little heart will start to beat on its own & that she won't need another surgery to place a permanent pacer! All of our other little heart friends that have had surgeries recently are doing very well. Elijah had a follow up today with a good report; Karly is doing well & getting stitches from chest tube out soon; Addisyn, Ashcer, Colin & Emma are all doing well, as is Isaac after his recent cath! Please continue to keep all of these little blessings in your prayers! If we've learned anything through this journey, its that prayer can change things!
Sunday, April 27, 2008
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!
Saturday, April 26, 2008
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!
Thursday, April 24, 2008
Check me out, aren't I cute!
*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!
Wednesday, April 23, 2008
Counting down...
Wednesday, April 16, 2008
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!
Monday, April 14, 2008
Cardiology appointment
Wednesday, April 9, 2008
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!!
Friday, April 4, 2008
Back on the oxygen
Thursday, April 3, 2008
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!