home for the FIRST time

Well, here's a picture anyways (I'll work on the videos again next time). Aunt Teresa met us in the front yard on Tuesday with balloons & camera flashing. I'm going to go back home (our Internet isn't working right now so I'm next door & Aunt Vince & Uncle Sue's house) & try to get some sleep. I need to take a clue from Andrew who has been sleeping through the night again. Such a good boy.
Also, please keep our precious Grandma Dottie in your prayers, it's not looking like she's got much time left. Steve & I sure do love her & pray that she will have peace again soon. Thank you all for everything!

friday

I've been trying to upload videos but to no avail, one of us on the way home & one of Steve getting Andrew to smile so big. Sorry for the delay in updating, we've been a little busy : ). It is great to be home with our little guy. To answer a few questions: Andrew is still on quite a few medications, oxygen & has a feeding tube. We haven't brought our dog, Tusk, home yet, but we are sure missing him. And I was worried about being gone for a couple days when the baby was born. He's just proving what a great dog he really is. By the way, a BIG thanks to everybody who helped taking care of him, particularily Stacie & Melissa who have kept Tusk at their house (& in line) for the past several weeks. Also, I want to make sure I thank everyone who gave Andrew a gift for Sebastian G's birthday. My great friends Cristina & Paul asked the guests to their son's 1st birthday party to contribute to help us out for Andrew in place of a gift for Sebastian. We are definitely happy to be home, but we do miss our friends at the CVICU. Seriously, there is no way to express our graditude for all of you who not only met Andrew's medical needs but truely cared for him as a baby & for being there for us as parent in shell shock, worry, joy & everything in between.

Posting from home!

Just a quick post. Andrew came home with us yesterday afternoon. It has been a very busy 24 hours, but very good! Andrew is doing well. Still grumpy from the teeth (& I think getting used to his new home - wondering where all his friends are from the CVICU). We did get a couple videos which I will put up as soon as I can. Thank you all so much for everything! Definitely a dream come true. Even when he was waking us up crying every 45 minutes last night Steve & I couldn't help but smile & giggle at each other. What a precious gift that boy is!

Monday

Not much to tell today. Steve & I spent most of the day at home getting ready for Dizzy. It was a busy day & I need to be getting to bed soon, but it's a happy tired. Very excited about tomorrow. Everything still looks good. We will definitely take pictures & videos which we will get up as soon as we can. Thanks so much for everything!

Sunday

Captain Andrew steering the ship Miracle.

The hall of lights (as we call it).

Watching the trains.

Here are some pictures of us hitting some of our favorite spots at the hospital when we go on outings. We figured we better get some pictures before we blow this joint. Andrew is doing well. He's pretty fussy today, but those choppers are on the brink so I'm sure they are giving him heck. No worries, he will give them heck right back. Other than that, things are pretty uneventful. Just the way we like it. I better go now; Steve is avoiding a very large poopy diaper. I'm coming little buddy.

5 months old

23.5" long

15.75" head circumference

5.85 kg

Andrew's had a great day so far. Steve & I went to see Prince Caspian this afternoon & the nurse told us he was in his bed playing for about 2 hours. Just happy kicking his giraffe toy & looking around. Just FYI: a bunch of people have asked if maybe the fevers are due to his teething and the answer is ... maybe the low grade stuff is, but really anything above 101 is too high to write off as teething. Luckily he's been sticking to low grade lately (when he has a temp), but a couple weeks ago when he was spiking fevers he was going up to 102 - 103. The reason we wern't abe to go home today like we were hoping is becaue on Wednesday morning he had a 102.2 fever. So there you have it.

A leg up

I literally just spend hours trying to get a video up for you guys, but it is midnight now & I am going to bed so I can get up & see my boy again in the morning. He's doing pretty good. He has definitely been cranky over the past few days, but he's got like 8 teeth trying to come in. A couple look like they may be come in in the next week or so. Very exciting. He doesn't think so though. We will all be happy when they bust through so he won't be so miserable, but also because I'm sure he will be adorable with choppers. Ha! Hopefully, hopefully we are really going home on Tuesday. Steve & I are trying to sleep it up now, but we can't wait! Actually, Andrew has been sleeping through the night again (whoo-hoo), but he has to get i v antibiotics every 8 hours, so somebody's got to be up late to run them & somebody's got to be up early to do it. Andrew's crib is in our room (it actually looks right at home in there) so we don't have to go far, just roll out of bed & there he is. Poor kid, I'm most likely going to smother him (with love, of course). My friend, Sandra, from Vista was right, I do miss carrying him around in my belly. I was sure that I would not, but despite the discomfort, it was nice always being together. Seriously, poor kid.

Wednesday Update

Well it looks like we might be shooting for Tuesday to come home. Andrew spiked a little bit of a fever today, so they have to do blood cultures- hopefully no infections will show up! Other than that he is doing good, just hangin out... waitin to go home......

Tuesday

Well, Andrew is still holding pretty steady with temps staying below 101 for the past few days. Mommy would like more in the 98 - 99 range, but we are happy it's not spiking really high like before. He is definitely working on those choppers as you can see in the video. Okay, I hesitate to even mention it & don't say anything to Dizzy, but we are going to try to go home this friday. We have to take 4 more weeks of iv antibiotics, which means spending good quality time with a home health nurse, but we are really hoping the 3rd time's a charm for d/c planning. He just has to keep his temperature down in the range it's been in the past few days.

Also, we have another prayers request. My good friend Jennifer's grandmother, Kathy, is in the hospital (I think the ICU). I believe she had a cerebral hemorrhage (correct me if I'm wrong Jenn). Jennifer said she's doing okay this afternoon, but I know those things are really scary for family. Thanks guys, we really do have the best support system.

Monday

I grabbed the camera to get this teething picture. Andrew has still been sleeping a lot & fussy with the teething stuff, but really pretty good considering. We are hoping the fevers will stay low so we can talk about going home soon. We are ready just as soon as he is!

more happy birthdays

Happy Birthday, Aunt Katie! & Happy 1st Birthday Sebastian! (Katie is just a few years older) Andrew would sing for you but he is STILL asleep. That's right, last night when I thought he was awake to party he was only up about a 1/2 hour & hasn't really been awake for more than that at a time for the past 32 hours. Hopefully he's sleeping away whatever has been giving him the fevers. Maybe he just wanted to be well rested for the birthdays today.

Late Night with Andrew

Well, it seems my boy is completely turned around now as he is just waking up happy & ready to play. When he slept through the morning we were hoping he would be awake the afternoon & evening & then sleep at night. The best laid plans... No matter what time it is, it's good to see that smile - not to mention the cute little leggies going. He particularly likes to stick the right leg straight up in the air. It's definitely one of the cutest things ever. Well for anyone else still up, good night. (You better get to bed or you'll end up like Dizzy here) Thanks for remembering Andrew in your bedtime (& anytime) prayers!!!

Saturday

Well, Andrew has been pretty much either sleeping or fussing. He seems to have a couple teeth (on the bottom) pushing on his gums. The nurse practitioner gives them a couple weeks before they are poking through. I'm hoping she's right, poor little guy.

He got a special visit today from his Aunt Gina (who somehow snuck out without getting a picture taken with Andrew even though Mikala was all about snapping photos) & his cousin Mikala (who is quite the big kid now - note the earrings).
Mommy had fun last night going to Aunt Becki's surprise '80s graduation party. I actually forgot to take my camera so I only have pictures on my phone. Very funny outfits though! If anyone has a good pic, email it to me (I'll post it if it's not too embarrassing).

Thursday

Well, I figured I better put some pictures up since I hadn't in a couple days. Andrew had a pretty good day. He has been sleeping since noon (in spite of our efforts), so we expect night shift to have lots of fun with him in the wee hours of the morning. We will work harder on keeping him up more during the day before we go home!
Sorry I didn't give any context last night about our new Kylie. For those of you not a part of the Bartholomew clan (my mom's family - close to 100 people strong starting with my grandparents in the pictures with Andrew a couple days ago), Kylie's mommy is my cousin Maggie.
Also in important news, Aunt Becki is a college graduate!!! She walked this afternoon to receive her AA degree & we are SO proud of her. Andrew said, "rock on with your bad self!"
Thanks everybody for your endless prayers & support. Really, we can't tell you how much it means.

Wednesday

Andrew had a good day today. His fevers have been consistent at low grade without any big spikes for close to 48 hours now. whoo-hoo! He went for his CT scans this evening & of course I thought it was the cutest thing. He was just so little on the big stretcher. He was a very big boy though & did it without any sedation, he just held my hands, which was cuter than cute. Thank goodness for new technology because the whole thing was no longer than 15 minutes for head, chest & abdomen CTs. We'll see.
We went outside 2 times today & enjoyed the nice weather. It is such a blessing to be able to just hold him & hand out with him outside of his room & without a bunch of monitors & tubes. It's the little things. Andrew also wanted to say hi to his new cousin Kylie (is that how we are spelling it?) who was born last evening. Hurray!
Thank you all so much for your ongoing prayers for Andrew! He is an amazing little guy! If you would, please add our Grandma Dottie to your prayers. Her health is looking poor again & hospice has brought in a sitter to stay with her 24 hours at the nursing home. Steve stayed over at our home in PSJ so he could stay with her this afternoon & evening. She is very precious to us & has had quite the battle over the past 2 years with lung cancer & all the other issues that follow extensive chemo & radiation. Thank you.

trick pony

Andrew is doing pretty good today, crankier than yesterday & fever still in play, but not too bad. There is a group that brings ponies to the hospital (outside, of course) & they were here today - the first time they have been here when Andrew was able to come out of his room. So I tried to get him awake & ready to go down as quick as I could after I saw them, but we were too slow & we missed the ponies. That was our big adventure for the day. We went & hung out by the ship & sang songs while enjoying the breeze instead. The ponies come about once a month, so I told Andrew we will find different ponies to see over by our house.

Parting is such sweet sorrow

Our good friends Wendy & George (& Cody) came by to see us before they move to Kentucky tomorrow (boo-hoo). We are very sad to see them go, but we look forward to keeping up with them on their own blog (hint-hint) & can't wait for their next visit to Florida. We love you guys! I guess the Vista Vixins have gone national now, huh?

GREAT grandparents

Andrew had good day today. We are hoping the fever is on it's way out, though we haven't come any closer to figuring out what is causing it. He had some labs done tonight & a CT scheduled for tomorrow, just to cover all bases. But today it stayed pretty steady at low grade & right now it's actually within normal limits, he just needs to stick to that. Mommy had a great day playing with him (& he should sleep great tonight because he was up a good deal today & wore Mommy out). He got a special visit from his great grandparents (in pictures above) as well as Machie (but he was too grumpy for pictures then). It was fun to have our old Andrew back & great to see him getting stronger again. Can't wait to get him home! Thank you all so much for the prayers!

Happy Mother's Day

Thanks for all the Happy Mother's Day wishes. It would have been nice to be home, but I'd go to the ends of the earth to be with this sweet boy, so I can't complain - we are together. He is still the cutest thing ever. Also still a pretty hot one; we are praying fervently that they will figure out this mystery fever soon so we can get rid of it and get ourselves home. Next time he wakes up we are going to take another outing & this time maybe we'll remember the camera so we can get some cute shots to post.
Andrew also wanted to say Happy Mother's Day to all his many aunts & grandmas.

A nice day for a white wedding (or 2)

Well, pretty much more the same 'ol story here. Fever, for some reason usually more at night than during the day. We can't figure the cause out completely, which is frustrating, so keep praying because we need to get over this before we can go home. He is doing pretty well otherwise. Hopefully we'll get some good awake time with him tomorrow & get more pictures to put up for you all. Thanks for the endless prayers & support. We love you!
Congratulations to Aunt Christy & Uncle Nimish who tied the knot today. Hurray!! And our friends Jennifer & Brian also got married. Hurray!!

Ha Ha

okay, it's too funny, i couldn't wait until morning.

Friday Night

Andrew's doing pretty good today. Steve & I just got a chance to take him outside unplugged for the first time in about a month. It was very fun & had an adventurous conclusion of which I will post another video later. It will be a while though because these things take a good while to load up & Steve & I got the new Dylan movie I'm not there to watch so... fair warning (Teresa) if it's not up tonight I'll get it up tomorrow.

Thursday

Andrew is doing better today than last night. Actually after they got his fever under control last night he smiled and played with me for about 45 minutes. It made my birthday. They ran more cultures which did grow something so they are consulting the infection control specialist this afternoon. Hopefully she will know just what will help get rid of this infection & get Andrew feeling much better soon. Probably you've realized by now that we won't be going home tomorrow, but by now we have learned to roll with these things & just have as much fun with our little guy as we can wherever we happen to be. Thank you for all your prayers, keep it up!

Wednesday Evening

We are up here with Dizzy... He's going through a bit of a rough patch, he has a fever of 103, his O2 levels has dropped and his heartrate as gone way up. So they are running some test and trying to figure out why this seemed to come out of the blue. Just please keep him in your prayers, Thanks. Will update when we know more

Just playin w/daddy

mohawk....sort of...

Some pics

Tuesday

Well, Andrew is doing good today, no real issues coming up. I think I'm just gonna put up some picks and video from earlier today. As far as we know we are still on for coming home on Friday

Monday

Here is Andrew in the swing last night. He didn't seem too impressed, but he was pretty tired. The rest of us were really excited about it though. It's funny what a baby will bring out in a group of adults. Good times! Not much new today. Working on weening some more medicine & trying to get ready for discharge, hopefully Friday. Still has a bit of a fever, but they adjusted some things to try to get rid of that. Please keep praying for Andrew, especially for his pulmonary veins to stay open - that's the big one. Thanks for EVERYTHING!

p.s. Happy Birthday, Aunt Gina!!! I love you!!!

Sunday

My boys.

Daddy & Dizzy

Well, we are shooting for Friday, seems like a good day to go home. So we need to get Andrew used to sitting in his car seat, he has to pass a car seat trial (all strapped in, etc.) before we can take him home, so here is a picture of his first time trying it out. He definitely likes it - he has been zonked out since about 30 seconds after we put him in it. He just snuggled right up to the side of it.

Saturday

Our little washcloth head. We were trying to help him cool down last night with his fever. He's still got one today, but not nearly as high as yesterday. We're pretty sure it's due to withdraws. Poor kid, but they are working on figuring out where he needs to be to be comfortable right now, then we can work on weening from there.

He was hiding. Too cute!!!

Thanks to everyone for your prayers & endless support. Vivian for the encouragement at work today, Baron & Claudia for sharing dinner with us tonight, & for the comments posted - it really is an encouragement to read each day.

Friday

Here's a video from wed night. Andrew is a trip - he likes his breathing treatments. The RT said she thinks some kids like the feel of the cold air in their faces. I guess it's a good thing he likes them since he needs them right now. He looks pretty good today. He's got a fever though & we can't figure out why. Again, maybe it's a virus, but we are hoping it's more because of all the changes his body has been through lately. Either way we are praying it's short lived. I think it's about time Andrew felt better! Thanks for your continued support! It's a long time to stand by somebody & we are grateful to have you all standing firm with us.

p.s. thanks Machie & Papa or comming to visit yesterday evening, & Marshall for stopping by this morning.

Thursday

Andrew is still doing well. Sleeping a lot, which he needs to recover & regain some strength. His voice is just starting to come back - music to our ears. We are hoping he moves right along with his recovery so we can spend some time at home with our boy. We still need prayers, particularly that his pulmonary veins stay open. It's not an easy situation, but when you've got such an incredible son you can't help but smile & thank God for him. Thank you all, for everything.