Echo results

Vaeh had her second echo since her surgery today. They did it with & without the O2, checking the pulmonary artery pressures. There was a slight difference in the pressures, with them being a little lower when she's on the O2. So it looks like most likely we'll go home with the O2. I've been telling them all along that it wouldn't be a big deal since we're already set up for it anyway! What do mom's know, though!

They have her scheduled in the morning for a swallow study to see where we are compared to last year. Then tomorrow afternoon she is scheduled for an MRA (magnetic resonance arteriogram) of her pulmonary arteries. From what I understand they want a good look at the junction of her PA's with the conduit.

Once all of those tests are completed, it looks like we may get out of here sometime on Saturday possibly, but not set in stone yet! I'm sitll amazed that they are talking about sending her home just 9 days post-op! With her last open heart she wasn't even extubated yet! Whooohooo!! Its just another testament to how amazing these kids are!!







In the echo room - playing with the gel!


Playing with mommy's phone


What happens when left unsupervised in the crib!


Who needs toys? Especially when there's an empty bottle!

On to general care...

I love you, Mommy!


Yes I'm ornery & I know it!


It's mine - you can't have it!










Vaeh was moved out to the general care floor late yesterday afternoon. What a night & day difference in the nursing care! Even though you know to expect it, its still a shock when it happens! This morning was by far the hardest day. When I arrived she was laying in her crib watching Nick, Jr. What a big smile I got to greet me, then the outstretched arms! "Pick me up Mommy!" The nurse tech came in & said she had sat up on her own this morning!! We're only 6 days post-op - WOW! That's my girl! When the nurse finally came in, I asked her why her feeding pump was set for 125mL per hour (bolus feed for all you tube feeding mommies!). Her response about set me ablaze. She told me that she had "guessed." What?!?! Not something you tell a mom when you're trying to build confidence in your abilities to care for my child! Since then, lets just say a dentist would have an easier time pulling teeth than I have had getting info from her. The communication is just not there in this unit. It is so hard leaving her with people that I don't trust. We have to have a couple of tests run before discharge, as well as weaning her from the O2. There is some confusion there whether or not they are going wean her or not. But overall she is doing wonderful! I'd say we're back to about 95%!

Moving on (& hopefully home soon!)

The camera, again Mom? Haven't you taken enough?!?


Yeah! Another gift! Thanks, Emma, Wendy & family!


Check out my wild & crazy hair!


Okay, one smile & that's it!











Vaeh is still in the PCTU currently, but only because we're waiting for the phone call from the floor to move her out! She again had another good night. When I arrived this morning, she was laying back in the bed propped up watching Disney. They had already removed her arterial line from her left groin (I can't believe they got a line in her left groin!!) & are planning to take her chest tubes out this afternoon. She's also been progressing on her feeding with switching her to neosure (sp?). I am continually amazed by my little girl! She just keeps on going and going, kind of like the energizer bunny! LOL! I think the only med she's getting through the IV is her antibiotic, and that will be done soon! So I guess you could say that we're homeward bound! Again, thanks for checking in on us, & I'll keep everyone updated as we know more!

Still hanging out in the PCTU

Vaeh continues to do well today. She sat up in her bed this morning for nearly 3 hours! Little stinker didn't want to lay back. If we had to put her back for something, she instantly started trying to pull herself up to sitting! They did stop her morphine earlier this morning, & just stopped her ativan drip! Last time she was on ativan when she came home for 3 months post-op. She is moving through this one so fast that I don't know what to do!! This is all new territory for us, but I love this territory. I think we'll move here permanently!

They did an echo this afternoon to check the RV (right ventricular) pressure. I haven't heard the final word, but the feeling I've gotten all along is that it has been much better than they thought it would. The cardiologist has to take a look at it & then they'll let me know about it. I have a really good feeling, though, so I'm not worried. They also started her bolus feeds again today - and she's tolerating them well so far. I spoke with the dietitian earlier, and the plan is to increase her calories & decrease the total volume. So basically it will equal out & she'll be on something other than baby formula! Once we're home, she'll need less total volume in her bolus feeds but still be getting the same total calories that she does now!

The plan is for today we hang out in the PTCU (peds cardio-thoracic unit). The chest tubes will probably come out tomorrow as she still had a little drainage yesterday. Her lasix was changed to oral from IV, & they restarted her prevacid. Depending on the echo, she may not need digoxin anymore according to the cardiologist. I can't believe she'll be down to possibly TWO oral meds! I never thought we'd get there when she was on 14 different meds! I tell you, these little kiddos are amazing!

I am just in awe of the way that God's plan comes together. With her other two surgeries we knew he was in control, but with all of the complications... But this trip is a great addition to the testimony that Nevaeh will have to tell some day, as well as to Jon & I's! Thanks again!

Pictures, finally!

Sissy's here to see me!


No more nasty breathing tube in my mouth!


Big sis having fun on the play ground!


Look at me sitting up! Sooo big!


Cuddling with Mommy for the first time!







Sorry it took so long to get the pictures uploaded. As you can see, I was enjoying some cuddling with my baby girl! What a strong little one she is! Jacqueline, her nurse tonight, said that there's a good chance that she'll move out to the floor tomorrow. She said that she probably wouldn't need to go to moderate care - yea!! Such a complete different course than we've been through in the past! She has wanted to sit up since they extubated her this morning, & the first thing she did tonight when I got back after sending Gabby, Daddy, Mawmaw & Uncle Bob off was put those arms out for me to pick her up. So when Jacqueline said that I could hold her...well lets just say that the flood gate opened with happy tears! She's doing so well I almost can't believe it! Thank you for all of your continued prayers! As you can see by these pictures, prayer really does work!

Breathing on our OWN!!!

Yep! She's off the vent, as of 10:00 AM this morning! Its taken me a while to be able to post anything (sorry :0)) because the little Miss Vaeh reared her spunky-ness after they extubated her! Plus Gabby was here for a visit & I needed some Mommy time with her, too! (Which was great, but so hard to say goodbye at the end of the visit!) We were staying at the RMH, & at this one you have a daily "chore" to do, as well as waiting on the bathroom (shared between two families). So we got a little bit of a late start. We didn't get over to the hospital until about 10:45, & just as we were getting out of the car, my phone rang. Sharon, her nurse, was wondering if I could get up there soon because she was a little "rambunctious." So we headed up, & boy was she spunky! Thrashing around in her bed & sounding junky (lungs). It took a while, but Mommy was finally able to get her calmed down & she drifted off to sleep - lightly. The cardiologist came over & said that they'd see how her blood gasses looked & go from there. I think they again weren't expecting her to do very well, but true to form her gasses have been great! They have her on a high pressure nasal cannula, but she's pretty much mid 90's! They again are impressed with how well she is doing! Of course we know that its all thanks to God!

So right now she's resting comfortably. I found out later that they had dropped her morphine & ativan about an hour before they extubated her, so that may have had something to do with her being so aggitated! She loves her drugs!

I promise that I'll post pictures later when I get a hold of my laptop again. She looks absolutely beautiful without that et tube in her mouth! Of course I'm her Mommy so I'm a little biased! Thank you all again for all of you prayers & support!

Staying with the status quo...

Vaeh had yet another good day today. She was so calm & peaceful today seeming to rest quite well. She is still on the vent, & when we left tonight they had just drawn a blood gas that came back good, so they were going to sprint her. That means they will basically turn off the ventilator & let her breathe on her own & see how she does. If she tolerates the sprints (they'll do at least 2, more than likely 3) through the night, they will try to extubate her tomorrow!

I am just amazed at how well she is doing! She continues to please the medical staff with how well she is doing. Her nurse tonight, Jacqueline, said there is a chance that she won't even have to go to moderate care, but will go straight to the general floor! She's never done that before, so I'm kind of lost - in a good way!

Big sis is coming up for a visit tomorrow, so things will be busy here in Ann Arbor! It will be nice if Vaeh is extubated before they get here, but it won't scare Gabby as she has seen Vaeh on the vent before :0) If Vaeh keeps going the way she's going, we should be home soon! Please continue to pray that she has a full, quick recovery! And, again, thank you for all of your prayers!

**Please - if you visit Vaeh's blog, leave a comment! We love reading all of the encouraging words, they are a real pick me up. Plus we'd love to see all of the folks that visit here! Thanks, again!

Another day under the belt

Dr. Bove - the man that God used to 'fix' my heart! What a wonderful gentleman & instrument of God!



Let's Go Blue! No one can say that Vaeh's heart doesn't 'belong' to Michigan - in a literal sense!



Resting peacefully. Although she can get a little spunky when messed with! Like my monkey? We're just hangin' out! (Thanks, Aunt Debbie!)





Friday was a good day all together. The cardiologists came around in the afternoon & said, again, that she is doing better that expected. As you see in the picture above, Dr. Bove was around today. He, too, said how well she was doing! That's my Spunky Monkey!

The et (breathing) tube is really agitating her when she wakes up slightly, so they feel that to allow her to rest the next step is getting her off the vent. Her blood gasses have all been good any time they wean (lower) her settings on the vent, so they hope to try for extubation sometime tomorrow. They aren't positive that it will happen, but they want to try. I think that their thought is that once the tube is out, she can rest a little more comfortably.

They've done 2 sets of cultures (blood, urine, & sputum) to see if anything grows that would be causing her to have a temp. It came down fairly well yesterday, but last evening she was warming up again. Although this could be because her night nurse had her covered when we got back there! I asked if she was cold, and the nurse just said "no." Okay, so why do we have a blanket on her? I told her she was a hot box. Of course once the nurse took her temp & it was up, guess what? Yep, she was uncovered! Maybe Mommy does know best!

She's also needed some potassium & magnesium replaced, but that isn't a big deal. We've been down that road before! Overall she's continuing to wow & amaze them this time! Gotta keep these people on their toes!

I just spoke with her nurse for the day & she continues to do well. Today (Saturday) they are going to decrease her morphine to see how she does. Then this afternoon they'll do her sprints on the vent & hopefully by tonight she'll be extubated! Vaeh is just amazing everyone, including Mommy!

I'm probably going to say this every time I post. Thank you, again, for all of the prayers & support! We truly appreciate each & every one!

"Better than we expected!"

The title of this post says it all! The nurse today said when we got to the hospital to see Vaeh that she is doing better than they have expected her to do. Her blood pressure has been good, as have her other vitals. They did have to put her on an ativan drip, just to help keep her comfortable. She has also been needing doses of versed. She has been stirring some, and even opening her eyes today! When she does open her eyes, she looks somewhat uncomfortable. She tends to gag on the et (breathing) tube when they try to swab her mouth.

One of the floor cardiologists came around a little bit ago & said that her pressures have done better & as long as she tolerates a more aggressive weaning today, they'll try for extubation tomorrow! But it is all going to depend on Vaeh & how she tolerates things! They have already been able to wean her vent settings today some & she seems to be tolerating that so we're headed in the right direction. Her temp is coming down, but she is still in the 48 hour window for getting tylenol every 4 hours. Overall things are going awesome!

She is such a strong little girl. Every time I see her I am amazed by her wonderful color! I am going to be a little paranoid once we get home if I see the slightest tinge of blue! I just love that my little girl is amazing the docs! Thank you, God! We give you all the praise for Vaeh's wonderful recovery! And a big thank you to all of our friends & family that have & continue to support us through this. We wouldn't be where we are now if not for all of you!

*PS - Wendy, the picture is for you & Emma! I told you the bear would be with her!



Thanks for the bear, Emma! Luv, Nevaeh