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...