Settling back into a routine

Things have been going pretty good since bringing Vaeh home last weekend. The first night home was a little rough. I think a combination of her being unsure if Mommy & Daddy would be there when she woke up and her being sore led to a fairly sleepless night. So Vaeh & Mommy were back in the living room! But on Sunday night, she settled back in to a good sleeping pattern. It was a little late getting her down, but she slept until 9 AM the next morning, & woke up in such a good mood! My little girl keeps getting closer to her norm every day. This morning (9:30 AM) she is still sleeping!

As for the eating front... we're making great progress! It all started the morning we brought her home from the hospital. Daddy & I stopped on the way to the hospital to get a quick breakfast, just from McDonald's. Daddy got hotcakes, so he waited until we were in Vaeh's room to eat. She kept eyeballing his plate, so he gave her a little taste of syrup, & of course she loved it! All tolled she probably took about an mL of syrup - and NO GAG! Not even the slightest wretch! At home on Sunday morning, we got carry out from Bob Evans. Mommy's favorite - strawberry pancakes! So of course when we started eating, Miss Vaeh was watching ever so intently. She took quite a bit of the strawberry juice & whipped cream. Again, no wretching or gagging!
Now wanting to be a little more adventurous, we tried a little more texture. I mashed up a graham cracker in some milk, and she loved it! She keeps reaching for more & for everyone's plate within arm's reach! Last night, she ate a 1/4 piece of a graham cracker! Then she decided to chew on a crayon, so we tried another 1/4 piece of a cracker & she ate about half of that piece. I can't believe how she's taking off!

She's still on a half liter O2 continuously to keep the PA's open, & we're not sure how long she'll need to be on that. So that's another challenge in trying to figure out how to let her roam around the house & not pull the oxygen tubing. She's just doing so well that I don't know what to make of it. This is all new territory for us! I wouldn't give it up for the world!

Vaeh's surgery

Make video montages at www.OneTrueMedia.com

We're Home!!!

Are we leaving yet?!


Lets go already!


Are we there yet?


Finally, wer're HOME!










Sorry its taken so long to update, but we had a lot going on the past couple of days! On Friday, they had Vaeh scheduled for a swallow study & sedated MRA (MRI of her pulmonary arteries). She had to be NPO (nothing by mouth) for a certain period of time before the MRA, so they decided to cancel the swallow study. They couldn't get the schedule just right to keep her on her NPO schedule. So, she had nothing to eat from 7 AM until about 7 PM. What a mad little girl we had! She was supposed to have the MRA at 3:40, but they didn't get her in until 4:30! Then we found out about 5 minutes before they did the test that she would have to be re-intubated:0( Needless to say, Mommy was none to happy about that!

Saturday morning we arrived at the hospital about 9:15 AM. I finally called for the nurse around 10:00 AM. Vaeh was supposed to be fed, and she wasn't being yet. So we finally got the ball rolling. Mommy helped hold Vaeh so they could take out her central line & chest tube stitches! I couldn't believe how long the tubing was for the central line, & how big around it was. It goes from the neck into the subclavian vein, so it was about 4 inches long & about as big around as a spaghetti noodle! Then the nurse practitioner came in to discuss the results of the MRA. She said that Dr. Bove had looked at them earlier. If you remember, Dr. Bove felt that based on her PA size, Vaeh would need to go back into the cath lab in about a month. Based on the MRA, he now feels that it could be another three to six months before she needs to go back! Thank you, GOD! He was impressed by how good her PA's looked, as well as that she tolerated the closure of the VSD so well! Again, she keeps on stumping them! We're scheduled to see Dr. Butto a week from Monday & hopefully she'll do well for him, too!

It is so nice to have her home! She seems so much more relaxed being in a familiar environment. She had a look of pure relaxation the minute we put her in her car seat! Then once we walked in at home, & sissy was there... well, lets just say we had a couple of pretty happy little girls on our hands! She is back to about 97%. She's starting to talk a little more like she was prior to the surgery, & move around like her normal little self. She still acts a little sore, but who can blame her?!?! We're only 10 days post op! She was just coming off the vent at this point with the last surgery! I am continually amazed every day!

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

Settling in for the night

We just got back to the hotel from the hospital & she was resting comfortably! She was sitting at 98 - 99% sats (with 50% O2 on the vent!). Blood pressure, heart rate, etc. were all good! She just looks absolutely wonderful! I can't stop smiling!

The nurse tonight said that they probably won't extubate her tonight...WHAT?!?! I wasn't even expecting to hear the word 'extubate' for at least 2 to 3 days! The fact that they have even thought about extubation just goes to show how good she's doing! Maybe tomorrow, but we're not gonna get our hopes up! We're taking it all in stride. She is now on morphine & an ativan drip. They've started giving her lasix, & I think maybe some potassium. She even opened her eyes a couple of times tonight when we were there. That was kind of hard because she had that look like "Mommy - HELP!" But luckily she went right off to sleep again & didn't get too agitated! That's my spunky monkey!

On a lower note, she did spike a temp & they sent cultures but everything is coming back okay so far. Tammi, her nurse said that its just probably the trauma from the surgery but they wanted to make sure with the cultures. I'm just glad that they watch them so closely! Well, its late & it was a looong day! So we're gonna get some rest & I'll update again tomorrow! Thanks again for all of the prayers! Keep 'em comin' for the pressures to regulate & for going home soon!!

We're Repaired!!

She's out of surgery! They took her back about 8:30 this morning, after a wonderful dose of versed. She was so loopy! It was almost like seeing a drunk one year old - LOL! They came out for an update around 10:30 and told us they were getting ready to go on bypass. Around 11:30 the update was that Dr. Bove dilated her right PA (the left was okay) & was finishing sewing the patch into place and would be changing the conduit next. By 12:30 they came out & told us that she was off bypass!!

Dr. Bove told us that things went well, but he was a little concerned with her right ventricular pressure. He said that it was "borderline" on the high side. Worst case scenario is that they would have to go back in to open the VSD back up, whether removing the patch completely or cutting a smaller hole in the middle of the patch. The plan is at this point to watch her with echo for the next few days. As long as her pressure does well, he feels she will need cathed again in about a month. At that time she may need angio again or a stent placed in the right PA, & that should help her pressure if there is still question about it.

When we were finally able to see her, she looks absolutely wonderful! Her color is perfectly PINK!!! I don't think she's ever had those! It was so amazing to see 100% on the O2 sat monitor!! And yes, I did cry! I'm just amazed at how wonderful she looks! Thank you for all of your prayers over the past couple of weeks. Please continue to pray that her right ventricle pressure levels out & we're home soon! We love you all!

Sadness & fear...

It is becoming all to real how fragile life is, especially when complicated with a CHD. There have been so many deaths this week. From infants to adults who are CHD patients. Unfortunately its a grim reminder of sin in the world.

First it started with a beautiful little girl by the name of Bailey Jill Reynolds. She was just 15 months old & had had her repair for TOF. She was doing well. In short, she was at a doctor's appointment & doing okay, but within a day, she became a lovely angel. According to her parents, they aren't sure of the cause of her death, but signs are pointing to an infection.

Just this past Thursday, a fellow by the name of Jason Cleveland also passed. He was a 36 year old, also with TOF, & also had been doing well. He was a member of a support group on Yahoo! that I also belonged to. He was vibrant & full of life from what his friends have said. He was involved in raising awareness about CHD's, and was planning to be a counselor at a camp this summer. They believe that he had a fatal arrythmia that caused his death.

Just a few minutes ago, I read on one of our heart friend's pages that another little guy lost his battle with CHD. 8 month old Caleb Gholston went home this afternoon to be with his almighty Father. He had Hypoplastic Left Heart Syndrome, which is an underdeveloped heart (basically), and had spent his entire life in the hospital. From reading his page, his parents are very strong in their faith in God, and continue to be despite their great loss this afternoon.

With Nevaeh going in for her 3rd open heart this week, to see all of these tragedies really makes the "what ifs" come to the forefront in my thoughts. I can only trust in God to know that His plan is ultimately what we have to live by, despite not knowing the outcome. I have seen Vaeh on the brink of death twice in her short life, & both times I have given her back to God. I have felt that she is only on loan to me from our Heavenly Father, so who am I to keep her from returning to His loving arms if He is calling her home! I ask that you please keep all of these families in your thoughts and prayers as they are faced with these terrible losses. I know that I will be praying for them, which will help keep my mind off of Vaeh's pending surgery! I took great comfort in a line from a post on the TOF message board by Bailey's mom, Angie. I think it sums everything up perfectly - Thanks, Angie! "The will of God will never take me where the Grace of God will not protect me!" Thank you, Father!

Closer we come, again!

Well, the countdown begins again. We've got three days from today for the surgery. Hopefully we don't get anymore calls from U of M. I already told Jon that if we do, I'm not answering it & that he could call them back & tell them they're not allowed to bump her! I'm sure things will go off without a hitch this time. The nerves are at bay for now, & hopefully they won't go into full excited mode too soon! She has had such a good week this past week, so I am very thankful for that. Last night was the best night we've had for quite a while. Both the girls were asleep by 9:30. Once I put them to bed & laid down it was after 11 for Mommy - can't help but watch a little of the news. I was getting up & giving Vaeh a breathing treatment at 4 AM, but here lately I've been pushing the morning one off until 6 AM. And usually she wakes me up around 5 AM. So this morning I got a wonderful suprise when the alarm woke me at 6 AM! To add to the good morning, She hasn't been vomiting as much as a normal day.

On another note, please keep a couple of our little heart friends in your prayers. A beautiful little girl by the name of Margo is battling for her life. She is exactly one year younger than Vaeh (they share a birthday!). She has already had one heart transplant, & there is a possiblilty of her needing another in the very near future. They are going to do a cardiac biospy on Wednesday.
Little Kaitlyn has been in the hospital since Tuesday with pneumonia. She is another little one with tet. She's had some complications & was on a vent at home. According to her blog, she went into cardiac arrest Tuesday & was down for about 30 minutes, but is stable now. In the midst of this, her family is preparing to move to Texas, so needless to say things are quite hectic for her family.
Champ (aka: Stephanie) is HOME!! After having her permanent pacemaker placed & regulating her coumadin/ INR levels she was discharged home on Sunday! What a great mother's day gift for her mommy! Welcome Home, Champ!
Please continue to keep these little kiddos & their families in your prayers! Although kids do well, there is always an uncertain future with CHD, so we pray for the best, live each day to the fullest & thank God for each moment we have together! I think this goes for anyone, CHD or not!

HAPPY MOTHER'S DAY!

Just wanted to say to all you mommies out there - HAPPY MOTHER'S DAY! Especially to the best Mom in the world, so Happy Mother's Day, Mommy! This is a poem I received as an email & wanted to share it with all mommies!

Mommy I Love You

Mommy, I love you
For all that you do.
I'll kiss you and hug you
'Cause you love me, too.
You feed me and need me
To teach you to play,
So smile 'cause I love you
On this Mother's Day.

-Unknown

Enjoing life one day at a time!

Well, I'm finally over the frustration of being rescheduled. Besides what can I do about it now?! Another baby needed that time more so than Vaeh did, and God must not have been ready for her to go into surgery on that day - all in His timing! So, instead I've been enjoying a few more days at home with my girls. Vaeh is doing so well. Her sats continue to be in the low 90's fairly consistently! She fluctuates between mid to high 80's to low 90's. Last night when I first turned her monitor on, I was in complete disbelief! The display said 100%! It didn't stay there long, but it was amazing that it even said it at all! It didn't drop right away, either. I know that there is no way that she was at 100%, but it was just so neat to see! I can't wait until after her repair & that is a true number!

Gabby is still the same energetic 4 year old! She's enjoying preschool & wants to go every day. She is also looking forward to staying with her cousin Caleb while we're in Ann Arbor. Every day she asks if its the day she gets to spend the night with Caleb?! My cousin & his wife are going to keep her while we're gone. This way she'll have someone to play with. Today at preschool, it was pirates day! When I got there to pick her up, she had wiskers! The teacher had painted wiskers on their faces and they all had pirate hats, a treasure map & looking scope they had made. They were all saying "argh, matey!" How adorable!

We are again in countdown mode, with now 6 days until surgery. I haven't heard anything from the surgery dept. to know what time we have to be in Ann Arbor on Wednesday, but I'm hoping to hear from them today. If not, I'll call them Monday morning. Hopefully it won't be at the crack of dawn that we have to have her there, because its hard enough getting myself ready to go, let alone getting Daddy ready! He's not much of a morning person, so its kind of difficult to get him moving sometimes! Its hard for me to not get upset with him at times about that, as I tend to be more of a get up and go type! We sort of clash at times for some reason! LOL



The girls had some Mawmaw time last night! They love both of their Grandma's (my Mom is 'Mawmaw' & Jon's Mom is Grandma), but last night it was Mawmaw time! Gabby instantly goes for the books almost as soon as Mom comes in the door! We had supper, & Mom hung around as usual for a while to spend some time with the girls & unwind. She is the office manager for the company she works for (she's been there for 35 years!) & also runs a wedding decorating/ rental full florist business with her two sisters. They just took over a local florist & bought out a couple that were ready to retire. So, needless to say my Mom's a busy woman between two full time jobs & helping me out with the girls! So once we were finished with supper, Gabby starts in with the books. Of course she has to sit on Mawmaw's lap, & as soon as Vaeh sees big sis on Mawmaw's lap she starts reaching up wanting on Mom's lap, too! Its so cute to see the jealousy factor between the two! What one has, the other wants! So, Mawmaw read a book or two & then headed for home. This weekend will be a busy one for them, with the florist end of things! Every mom loves flowers!

Also wanted to update really quick on our little friend, Champ. She had her permanent pacemaker put in earlier this week. While it wasn't the outcome her family was praying for, it seems it was in her best interest at this point. So far she is doing well, and is out of the ICU & on a step down type unit. They are now trying to regulate her heparin/ coumadin level, & then she'll be able to go home! All of our other little heart friends seem to be doing well at this point. Do keep little Arianna & her mom Vanessa in your prayers. They've been trying to figure out some issues with her lungs & they seem to be getting the run around from the pulmonologist. They are going for a second opinion soon. In addition to the lung issues, they are also playing the run around game with some of her labwork & the immunologist. From reading her blog, Vanessa is quite upset at the lack of attention paid to her daughter & lack of concern with getting any answers in a resonable timeframe! Please keep them, & all of our heart buddies in your prayers! Life with a child with a CHD can be overwhelming at times, but always worth every minute! We've all been blessed with wonderful kids! To all you mommies out there, whether you're a CHD mom or not, HAPPY MOTHER'S DAY!!!

Frustration...

I've been doing really well with the anticipation of Nevaeh's surgery, until today. At noon I received a phone call from the University of Michigan that they have bumped Vaeh until next Thursday, May 15th. I am so upset because we had everything scheduled here for us being gone this week! Now we have to completely rearrange schedules! This will really put a wrench in Jon's work schedule:( I just wish the whole thing were over & done with! Now my nerves are kicking into high gear! Maybe I should have the doctor drug me until its all over - LOL! Oh well, I guess that there's a reason for everything!

Three days & counting...

Close & closer we come! Including today, we are now three days away from surgery and doing okay. We had a garage sale this weekend (which went very well) and that really helped keep me distracted from the what if's of the upcoming surgery! I'm sure any heart mommy, or mommies of anyone having major surgery, all go through the 'what if' process. Thinking about all the things that could happen, whether good or bad. I'm trying not to do that as all that accomplishes is creating more worry, & I certainly don't need to worry more! I'm just going to try to keep myself busy so that I don't have time to think! Ha! Anyone that knows me at all knows that this is a tall order!

As for little Miss Vaeh, she is still the little spunky monkey! With the garage sale this weekend & knowing that she doesn't get around like a normal toddler, we set up the pack & play so that she would have somewhere to sit to play not on the dirty floor! Most of the time she was happy sitting in her rocker chair, but she did like being able to move around in the pack & play. My little scooter bug! She's so cute how she scoots around while sitting on her bum! Of course, the PT hates that she does that (because its not conducive to good trunk control, or stability with walking) but its so hard to stop her! She's a little mover! It didn't take long for her to become bored with just sitting, so we stood her at the edge of the pack & play. The little stinker was walking (or cruising) around the edge like a professional! It was so exciting & yet scary at the same time! She is so close to walking that when she decides not to be stubborn anymore, boy am I in trouble! I don't think I'll be able to keep her down! I can't wait!!

Just a little update on all our little heart friends that have recently had surgery. Emma, Elijah, Karly, Ashcer & Addisyn are all now at least two weeks post op and all are doing quite well from what I've read! These little kids are so amazing! How fast they recover! Another little Karley (spelled different!) who just had a transplant is doing well so far! Champ (aka Stephanie) is still in the hospital & still dependent on the external pacemaker. From what her family has written, they will not make a decision on a permanent pacer until later this week. Other than still being on the pacer, she looks wonderful in the pictures on her page! Again, two more amazing kids! Please continue to keep all of these families in your prayers as they continue to recover. As well as keeping Vaeh in your prayers this week! Thanks to all who check on us! We appreciate all of you & love you all!


Maxin' & Relaxin'!


Gimme that!


Look out, you're next!


I just had to put these pics on! She was just so adorable that I had to share her with all of you!

Getting closer

Well, we're now 5 days away (including today) from surgery. Its still kind of surreal that next week this time, the surgery will be over & we'll be in recovery mode. Hopefully moving through that stage very quickly! Vaeh has been doing well overall. The night before last she had a rough night, that is to say Mommy had the rough night because her sats were all over the place. But Mommy figured something out. If we put the pulse ox monitor on her left foot, she tends to alarm like crazy, and if its on the right foot she sats in the mid 80's to low 90's! I'm guessing that it has a lot to do with the circulation to the left leg. They haven't been able to thread a cath line (arterial) since she had the art line & central line for the first open heart that were in for about a month in the left groin. Basically the cardiologist says that its occluded, but she has enough circulation to the leg that its not a problem for Vaeh. Just creates problems when they do a heart cath. He has been able to go in the right side every time with no problem. So, my theory is that because the circulation is impeded to her left leg somewhat, there isn't enough blood flow to the foot/ big toe to pick up a good pulse ox. So, needless to say we now put the monitor on her right foot & she's been having great sats at night.

Vaeh also had her last OT session yesterday, and did fairly well. Michelle, the OT, said that she's doing things pretty much on target, we just have to keep giving her tasks that challenge her & keep pushing her to do more! We decided to skip the summer session for OT because it would be a new therapist over the summer & I don't think Vaeh will do well right after surgery with someone new! I know the separation anxiety will be quite high for a couple of weeks, so why throw some new therapist into the mix right away?! Its bad enough that we have to have new therapists, especially when she just started doing so well with Barb & Michelle. Hopefully it won't that bad of a transition to the new therapists, she's already been through so much...