RollersInVegas

Still barking...

Happy Birthday to my little sister Christy!

Still barking....

Here's an example of why I haven't gone crazy yet:

I spent the day barking (still), filling out paperwork, making copies of medical records, and changing poopy diapers. Finally, we eat a delicious dinner of burgers and cheese puffs and then it happens! ISAAC ROLLED OVER!!! Finally, he's 9 months old and he did it!!! See...it could have been another stressful day...but, ended with Isaac rolling over. I don't know why...but, that's how it's been around here lately. We'll be hit with bad news and then something always overshadows it....something as simple as a baby rolling over!!! I couldn't be happier!!!

So, here's a little video with my big mouth in the background (you may want to mute your computer). Sorry it's so shaky, Chris was busy watching the football game and not Isaac!

Still barking like a dog...me, not Isaac.  He has a little cough now and then...but, he's ok.

It's bronchitis!  URRGGHH!!!

Merry Christmas!!

We hope everyone had a wonderful Christmas! Sorry I didn't make a lot of calls today...I sound like a barking dog with a stuffy nose! (What a combination..I know!).
The boys are all doing well...Eli is feeling a lot better....it appears that I am the germ pot now!
Janice and Natalie came over today and brought us a Christmas dinner and it was DELICIOUS!! Thanks you guys!
We have so many things to be thankful for this year. For OUR health, our son's health, the wonderful doctors and nurses, the awesome heart moms and dads we've met, our friends and family who have supported us this CRAZY year, and for our faith in Heavenly Father and Jesus....that we're not ever alone in all that we endure....that we KNOW we're always loved and that there's always a hand on our shoulder when we need to be strong when times may be tough.
(sappy...I know) It's just been a long year....(I'm on lots of cold meds)...but, we have been thrown curve balls and could easily sit on the floor and cry...but, we're NOT! We're so happy right now...spending time together as a family...while we make the plans for our future. (Our cups are ALWAYS half full!)
Enjoy our Christmas pics...IT"S LONG...so, just press play and dance around the room to the music!

First of all...I will CHANGE my password so that my LITTLE SISTER cannot post on this blog!

Hey everyone. This is a couple of hours early and hopefully Kathy won't kill me but....

HAPPY BIRTHDAY TO YOU
YOU BELONG IN A ZOO
YOU LOOK LIKE A MONKEY
AND YOU SMELL LIKE ONE TOO!!

I hope you have a great 32nd birthday Kat. :)

I love you,

your YOUNGER little sis Mandy

Hers's some Christmas pictures for your viewing pleasure.

I know it's Friday...but, let me tell you how our Thursday went!

Here's Mr. Isaac with big brother Eli. How do you like the princess crown?? Mandy bought a birthday cake and we had fun playing dress up with Isaac with the crown...(I know...he's not my little girl...but, I couldn't help myself!)






Here's Isaac with big CRAZY brother Chris...oh, the things Chris will teach him!

Sorry about not posting yesterday...but, once again the day got away with us!
The interview with CNN went great!!! The hour long special should air at the end of January. When they let us know, we'll be sure to let all of you guys know!!

My sister from Phoenix came over last night and brought my stinker 6 year old nephew and my 1 year old niece (who's my little magpie!). They had a blast running around the house and eating nothing but junk food!!! (What are aunt's for anyway??). They left late today...so, I'm still trying to CLEAN UP AFTER THEM! (yes...Mandy...you make a mess!)

As for Mr. Isaac. He started this morning with some horrible retching episodes. Where he was throwing up at the end of each one. POOR THING! But, as the day progressed...the better he got. He got a bath tonight...so, he smells SO GOOD. He's smiling ALL DAY LONG! He LOVES his big brothers. If they walk past him and don't stop to talk...he starts to cry. It's the sweetest thing! He still doesn't make any noises. He did just start squeeling at his toys when he gets excited...but, no babbles yet. I say "ma ma" to him all day long...in hopes that he'll call me FIRST! His g-tube site still leaks at times. But, both docs have looked at it and say that the size is correct. My only guess is that after surgery, he got swollen, then lost weight...and now is slowly gaining it back...so, maybe the skin around the site is just stretched out and not as tight. (maybe??)

I'm trying to download new pictures...but, I'm having technical difficulties. Joe had the camera attached to his computer, so...I just unplugged it and plugged it into mine. WELL...it says that there are no pictures to download...WHAT?? I forgot to "safely remove hardware" from his computer before I unplugged it! (I'm not telling him though...) I plugged it back in and I'll let him figure it out....ha ha ha!

So...hoping that I didn't erase a thousand pictures...I'll post tomorrow!

Our fellow heart mama, Terri, is going to change the insurance industry for everyone!! She got us an interview with a CNN reporter for tomorrow. They are doing an hour long special about insurance!!! Why us you ask.?? Well, what a story we have to tell. The parents of two healthy boys, then...to find out we're pregnant with a third boy that has a heart defect and DiGeorge Syndrome. This is shocking considering we're both healthy, non-smoking, non-drinking, non-ANYTHING kind of people....that just wanted to have another healthy baby. Now, 5 heart caths, 1 stomach surgery, 2 open-heart surgeries later...three weeks before Christmas...the AWESOME dad of our household gets fired from a job we've been with for almost 10 years. Now, Isaac has appointments with a specialist almost every week. He needs mouth surgery this spring, he will need another heart surgery at some point, AND his t-cells are low and we'll find out next month if he needs to go to California for bone marrow studies. So, we are out of insurance as of January 1st. Hopefully, we'll find out how much Cobra is this week..BUT, without a job...How do you pay for Cobra?? We will be SURE to tell CNN our entire story...the good and the bad...and I'm SO GLAD that they realize the need for such stories to be told.

NOW...that being said...I have to CLEAN my house and get some sleep....We need to look fresh for the cameras tomorrow!!! (well, as fresh as you can when you're waking up every 3 hours to start a feeding pump, change a diaper, or pat a little bum to sleep).

****Pictures****

I didn't have time to write captions under each one...and there are some turned sideways...(just lean to the side to see it!).
Isaac is doing good. Still retching..but, we're working on it!

I know...I know....where are the PICTURES??!!??

Well, I still can't find the cord and my computer doesn't take the camera memory card. So, I was going to upload the pics on Joe's computer...but, his is having issues today. Eli's computer is SO old, it's only useful in getting him on the internet...and Chris's computer...well, I can't find it! He must have taken it upstairs...(He's in BIG trouble!)...

So, bottom line.... We have 4 computers in this house...and I can't get a picture uploaded on any of them! (oh me!)
Tomorrow, Joe is going to watch Isaac so that I can take Eli out shopping...I'll get a new cord then (I PROMISE).

As for Mr. Isaac....we went to see Dr. Baron today (Gi doc). We increased the amount of corn starch we put in his milk. That's right...corn starch! It helps lower his blood sugar. So, right now we're putting 1 tablespoon for every 5 oz of milk...but, I can go up to 1 teaspoon per ounce if we need to. (WOW...that'll be some THICK milk)!! He didn't have a fever today. He had a lot of retching episodes today...but, each day is getting a little better. He's back to his normal feeding schedule of 5 ounces of milk every 4 hour (and I give it to him over 1 1/2 hours)...still using the feeding pump. We haven't tried baby food in a few days...he's just been too sick. He weighed in at only 15 pounds (he was 16 1/2 pounds 2 months ago!). He's currently not even on the charts...but, I'll work hard to fatten him back up (he's still in size 2 diapers...and they're almost too big!!)! The incision on his chest is healing great! He reaches for toys now and it's SO cute! Still a bit of a bobble head...and sitting up by himself will not happen for a while. That's ok though...I'll keep snuggling him!! Eli and Chris have been the best helpers and big brothers (almost TOO helpful!) and my Joe....He's been working on my "Honey Do"list like a champ and giving me much needed breaks! I LOVE my boys SO MUCH...all four of them....(well...until I go in a bathroom after one of them...)but, overall...LOVE THEM!!!

Chris is having a few guys over tonight to watch movies and play video games...Joe is in the garage working on his jeep..Isaac is alseep...and Eli and I are watching the Grinch....What charmed lives we lead!!!

Sorry...I still don't have any cute pics posted...but, we had a BUSY day!!
Here's how it went:
**Chris's alarm clock went off at 6:30...and like the great kid he is...he got himself up and started eating his breakfast. (Joe and I were DRAGGING trying to get out of bed!)
**Joe helped get Chris off to school and and I got Isaac ready to get up and downstairs (which entails getting all of him, his supplies, and feeding pump supplies gathered and taken down with him!)
**Joe showered while I got Isaac's morning feed started, while I made Eli oatmeal for breakfast, and I ate too!
**I showered while Joe then watched Isaac and Eli.
**Then...we all went out the door at 8:30am to go see Dr. Mayman (our card.)
The heart checked out GREAT! No fluid around the heart. His sats were 97!!! WHOO HOO! We decreased the amount of lasix he gets to only once a day. He too was a little worried about how Isaac's fever and behavior has been this week, so he called and got us in to see the pulmonologist this afternoon! But, first, we had to get blood drawn and a chest xray.
**So...we drive to the other office (15 miles away) and ATTEMPT to get blood from Isaac. Three nurses and 5 tries later...and faces that no mom should have to witness...Isaac was not giving up ONE DROP OF BLOOD to them. They talked to Dr. Mayman and decided that it wasn't worth torturing him any longer. (We have to go in next week for the rsv shot...and if he's still feeling bad, we'll try again then).
**NOW...feeling defeated...we go downstairs for our chest xray. UURRGHHH!!! They tried to lay Isaac on a table where the sheets were all rumpled...because SOMEONE ELSE HAD BEEN LAYING ON THEM! Then, one lady tried holding him down and she was sniffling...GROSS...I couldn't wait to RUN out of that GERM POT room! But, we SUCCEEDED...we left the building with one chest xray in hand!
**We drove through McDonalds and headed for the house. It's now like 1:00...and I have to leave at 2:00 in order to make it across town to our 3:00 appointment with the pulmonologist.
**This time, Joe and Eli stayed home.
After waiting at the office for 2 1/2 hours...we checked out with a clean bill of health. There are no problems with his lungs. No one knows what the deal is with my little man. He didn't have his fever today....so, maybe whatever he's been fighting is FINISHED!

GUESS WHAT??
After we left the pulmonologist's office...I drove over to Terri's house! Finally...we met! What a cutie pie Matthew is...and Terri is as beautiful as her pictures! And...she gave me some of her xmas treats that she made (I ate a few on the ride home).

So..it's 9:30, the Biggest Loser is on, Chris and Eli are asleep upstairs, and Isaac is asleep right here! What a productive day!!
Oh...I FORGOT...when I came home tonight...Joe and boys had cleaned the house AND cooked dinner!!! What an AWEOME DAY!!! I couldn't have asked for a better one!

Isaac STILL has a fever. (Just 100-101..but, still high for him). This is day SIX....I'm not sure if I'm convinced that it's still a virus. He still has no cough or runny nose. When the fever comes, he will start to retch until he spits up (or throws up...because sometimes it's a lot). So, I stopped the milk again and started the continuous feed of pedialyte. I just checked his sat levels, and he's in the low 90s. urrghhh. He's wheezing a little today. He is normally on morning and night breathing treatments (2 each time)...but, because of the low sats and wheezing, I just gave him another round (maybe that will help). We see Dr. Mayman tomorrow....GREAT! He'll find the problem and tell us how to fix it!!!

So, I still can't find the cord that attaches the camera to my computer...but, my brilliant Joe just reminded me to take out the memory card and upload the pics onto his computer!! (Why didn't I think of that??) So, I'll work on that tonight!

one more thing to add...

Isaac ate HALF A JAR OF CARROTS!!!
Whoo hoo. It was 6:30, and I decided to just give it a try. I gave him the Nuk brush to play with and stick in his mouth, while I would squirt a tiny bit in his mouth with a syringe (I mean TINY...like 0.3ccs at a time). After 20 minutes, the jar was half full and I decided to finish on this high note!!!

He's been snoozing in his swing for the past 2 hours. I'M SO EXCITED!!! It's a MIRACLE! Even if he doesn't eat another bite for a year...I'm SO glad for this small victory!!

Oh..it's such a BUSY day...Here we go:

**I can't find the cord that attaches the camera to the computer to download pics. (I'm looking, I'm looking)
**Joe and Eli hung the xmas lights outside this morning (FINALLY)
**Chris decorated the other xmas tree this morning (very cute)
**Joe no longer works in the mortgage industry. CRAZY!! It's been our world for the past 10 years. It's a good thing that Isaac has turned us into positive and patient people...or this would drive me INSANE!!! (Now...I have my husband around to work on my honey-do list....He might not like it, but he humors me!)

(Yes...you read correctly...and as I've promised in past posts....I will not speak ugly about situation.) But, I am SO glad that our shopping is done and we have already started making small changes in our lifestyle to accomodate Isaac's medical needs. We're too happy, strong, and wonderful people to let a little thing like a JOB ruin our spirits. Where one door closes, another always opens. And....I'm looking at a LONG hall of doorways, we're fortunate that we get to choose which one to open! (I'm Joe's cheerleader!!! And I take my job very seriously!)

Isaac....he STILL has the 101 fever! (Could a virus still cause a fever this long...this is day five!) I started him back on my milk today (not fortified). I'm feeding him 2 ounces, every 2 hours (over the length of one hour). Which...keeps me BUSY! He's retched a few times....but, nothing like a few days ago. He's just not his happy self yet. (But, his cheeks are PINK...can you believe it!)

So...I have plans to make hamburgers for dinner...and we'll put our lawn chairs out in the front yard and gaze at our lights! (just joking...but, wouldn't that be fun!)

OK...you are all GENIUSES!!!
The pedialyte is working like a charm!! He's taken a good nap today, he hasn't retched once, AND I'm keeping up on the Motrin and Tylenol so we haven't seen a fever yet!!!
He's laying back now watching Ellen...a man after my heart!!!

We FINALLY have the Christmas tree up, the garland on the stairs, AND the other tree put up (you see...MOM bought more ornaments...so, now we have enough to decorate TWO trees.) So, I'm letting the kids decorate that tree. I will take pics tonight and try to upload them! They're SO excited. And Joe PROMISED that he'd hang the lights outside tonight and put out all the reindeer lawn decorations. (our neighbors house looks SO good and ours looks like the grinch lives there!)

It's been such a CRAZY year...and if we had no presents, no trees, no xmas cookies...I'm SO Thankful that we have each other and three HEALTHY (ok..kinda healthy) BOYS!!! They are more than we could ever dream of having!!!

Ok...it's 2am and Isaac has been retching non-stop for about an hour. He's on a continuous feed (which is suppose to be easier on his little tummy). He's only getting one ounce an hour. Well, he's thrown all that up already! He's still got the fever of 101. Maybe we'll just stop the feedings for a little while, get the fever back down, and start them back up. GEEZ!!! I've tried talking to him and telling him that if he'll just start eating FOOD that this might all be better. (He just smiles back at me...ignoring me like the rest of the boys do)!

Isaac still has a low grade fever...100-101. This is the third day. I called Dr. Mayman's office...and Terri was right...he's out of town. But, the nurse told me that she didn't think his symptoms sounded like his heart. She told me to see our pediatrician. Now...I've told you that our pediatrician is scared of Isaac...he always just tells me to go to the hospital. So, we saw a new one....and she was AWESOME! But, just told me that Isaac probably just had a virus and it needed to run it's course.
We also saw Dr.Kogut, the surgeon who did Isaac's g-tube surgery. He started leaking around his g-tube site...about 1/2 ounce each feed. She just added a little more water to the balloon...and told me to just keep him on continuous feeds day and night for a few more days. He hasn't retched since starting the continuous feeds. So, we'll see!!!
My mom went back home today. We're all SO SAD!!! She did SO much while she was here...even cleaned my room! I love you mom...thanks for taking care of my butterballs!

Oh...my sweet Isaac followers...I have some stinky news to tell!
Isaac has retched about 10+ times today. His blood sugar is up in the 200s again, his mickey button is leaking about 1/2 and ounce with every feed, AND he has a FEVER...(and last night, he was sweating alot and breathing heavy)...
So, I'm going to see the surgeon AGAIN that put the gtube in. (Because of the crazy leaking and the sudden retching)...I'm calling Dr. Mayman to try to squeeze in tomorrow....and I just hope he's not coming down with anything. I suctioned his nose out this morning and got some boogies...but, nothing since. He is coughing....but, only a little before he wretches. He's drooling like a mad man (so, maybe it's teeth trying to come in)...
He went from my happy guy to my stink-pot...like overnight!
He's snoozing on the floor right now, with a cool rag on his forehead (he likes the rag when he's distrought!).

Everyone please say your prayers for Mr. Mason Manning. He's in surgery as we speak at Stanford. click here to see how cute he is!

I've started updating this blog for two days now....
FINALLY...I have a minute! Yesterday we saw Dr. Sirsey (our pediatrician). Isaac weighed in at 14 lbs 8 ozs. Today, we went to see the surgeon who did the g-tube surgery. They put a little silver nitrate on a tender spot...and he didn't even cry! WHOO HOO! Then, Mark (speech therapist) came over to work with Isaac's feeding. Well, Mr. Isaac was in a STINKY mood and would not cooperate. So, no food was swallowed this day! I hooked his feeding pump up tonight and it became disconnected somehow (i don't know how)...and his entire feeding went in the crib! What a MESS! (well...for Joe. He was watching Isaac for me while I ran out. Sorry babe!)

So, tonight I hope we all sleep! This morning about 3am Isaac started crying. So, I got up, started a new feeding, changed his diaper...and he would settle down, I'd crawl into bed...start dozing off...and WHAAAA! So, I'd get up, check the diaper, feel him to make sure he wasn't too hot or too cold...and he did this until 5am!!! Oh my GOSH! Finally, I decided to reach in and pick him up...and his back was WET! Now, I have never figured out how boys pee out of the back of their diapers...but, poor little guy was trying to tell me for 2 hours that his jammies were wet! Oh, I felt so bad! So, I changed his clothes and put him in bed with me (which, by now is about 6am). Before I knew it...it was 6:45 and time to wake up Chris for school! UURRRGHHH!!! And we've been up ever since!

My days are LONG...and still I haven't had a chance to upload any pics. Isaac is awake ALL day! He is not as fussy today...just requires my undivided attention. Eli slept with me last night...and at 5am...threw up. Good Morning MOM! He's got a fever now...YIKES...I'm keeping the boys on opposite sides of the room...and washing my hands far too much (they are so dry!). Joe and Chris come back from their "holiday" in Utah tomorrow. (thank goodness!) Isaac ate a few spoons of banana baby food today (baby steps, baby steps)...and NO WRETCHING since the heart surgery!!! And...I did a little xmas shopping online. Just boring details to report. YEAH!!!
We're SO glad to be home!

Our day was CRAZY yesterday (really...would expect anything less of us??)! We did make it to Dr. Mayman's office. The heart looks good, there's no fluid around it, just a little leak around the conduit that we'll keep our eye on. He said that we're headed back to Stanford for tune-ups when the leak gets too big or the conduit narrows. (hopefully...that won't be for a while!). He did notice how fast Isaac was breathing. I didn't fully understand how much distress his lungs were now under. But, Dr. Mayman said that it wouldn't surprise him if we had a couple of hospital stays this winter due to his respiratory status (not his heart). So...I made an appointment to see the pulmonologist...and can't get in until Jan. 2nd. And that means...we'll have to continue to be hermits...no shopping excursions for me for a while...and good thing there's vons.com!!! We did get out flu shot yesterday...which didn't make his attitude any better...He's still the crankiest little guy. He's smiling and giggling one minute, then looks around and starts crying. He's still on the heavy meds and steroids (all getting tapered...he should be off of them by the weekend).
Christy was here for a few days, with her 5year old, 3 year old, and 3 week old. That Luke (3 year old) threw golf clubs, golf balls, rocks, and money in the pool. Then, he turned some nozel on the pool pump, so that when the pump turned on this morning...water was shooting all across the backyard! (They better go ahead and build a juvenile detention center near him...then his mom won't have far to travel when she has to go see him!!! (oh...he's a stinker!)Kenny (the 5 year old)--which these are all my crazy nephews--he loved playing with Eli....and the newest niece in our family...was just a tiny little cutie pie! (Can't wait to see how she turns out with her two crazy brothers!)
Isaac has a hard time going to sleep (it's the methadone)...but, finally, after 5 hours of non-stop fussyness....he's asleep. I'll try to upload pics soon....he just won't give me a minute.

We made it home!!!
Safe and sound! He slept the entire flight (but, it was only an hour flight). No bags were lost, no tears were shed, and I'm ready to go to sleep in my OWN bed!
Goodnight guys!
Thanks for checking on us.
We have an appointment tomorrow with our card, Dr. Mayman. I'll post after we visit with him (so, a night post).

WE MADE IT!!! We're at the RMH and Isaac has been SOUND asleep for about 2 hours now. He's sleeping so good, that I keep going over to make sure he's breathing! My little crab muffin was just tired.
Before checking out of our suite at the hospital (ha ha)...we had to get all of our prescriptions filled...all 10 of them!!! Which, after insurance, was a wonderful $200!! Then, we had to have a portable nebulizer (in case we needed to give a breathing treatment at the airport or somewhere on the go) and wouldn't you know that's not a covered item on our insurance! So...there's another $300...and it wasn't even noon yet! Wait until tomorrow when we settle up with RMH (which, thank goodness, won't be too much) and pay for the rental car...and we bought a last minute ticket back to Vegas (which on Southwest isn't too bad)....GEEZ LOUISE...It's a good thing Joe works hard for us!!! I told the pharmacist that I was wrapping up Isaac's medicine bottles for him for christmas!
Oh...I can't wait to see my little stinker boys! They say they need haircuts...I love it when they let their hair get long...I always wanted little tan, long haired, surfer boys. Now, they're tan, shaggy haired, but no place to surf. Maybe one day we'll end up on the coast again (east or west)...but, on the ocean would be NICE!
So...we fly out tomorrow about 3:00 and tomorrow night I'll be eating dinner on my tv tray in front of my big tv watching my soap opera that I've missed for weeks (my guilty pleasure...don't tell anyone!).

Thanks again for everyone that helped us get through this incredible journey! From all the moms that helped take my boys to school (Debbie, Kim, Toni, Wendy, MaryAnn, Janice, and any other mom that got a call to help), my mom who's watching our boys now, Joe's mom who had them last surgery, my sisters for calling and emailing and sending goodies, my sister-in-law for always leaving us comments (instead of my brother who can't seem to find time to call...thanks Abby!), Thanks to all my HEART MAMAS....who hold my hand and give me advice and pep talks, thanks for all the members of our ward, other wards, and everyone who prayed and fasted for us and Isaac...we felt your prayers and hugs. I could list a million things that we're thankful for this year...but, mostly I'm thankful for my eternal family and my adoring husband (who, yes, at the moment...is still on my nerves)....but, I couldn't imagine taking this journey without him holding my hand, leading our family, and being the glue that holds us together (well..he's like the glue stick...I'm more like the super-glue...but, he's still glue!).
(I just crack myself up sometimes!)

I'm must go now and pack....YEAH RIGHT! We have enough stuff (JUNK) to fill 10 suitcases and only have 3...I'm not sure how that's going to happen yet!!

WOW...we went to the cath lab this morning and he had to be put to sleep to get the broviac line taken out. He was a CHAMP!!! No problems (thanks to the wonderful team that took care of him!)...and he's snoozing as we speak!

We're getting discharged at 3:00 TODAY...oh YES!! So, we'll probably sleep tonight and head back to Vegas tomorrow morning. I can' believe it!!!

Joe took the night shift again last night...so, he's at the house snoozing. I want to call and wake him up and tell him the good news...but, I'll give him a little longer to sleep.

We'll post again tonight to confirm that we made it out.
I'm SO EXCITED!!!

The wireless is back up!!! I can shop now!!! Yippie!!

Isaac is still a crab muffin. He can't sleep...he doesn't like anyone touching him...he's just miserable. But, we might be going home tomorrow...and it will be all worth it!! He got his pacer wires taken out today, the stitches from his chest tubes taken out, and he's scheduled to get his RSV shot today (boy...will that make him mad!). They are trying to get us scheduled for the cath lab tomorrow morning...and then we can be out of here by late afternoon!!! I'm so excited I can't stand it!!!

So...have I told you that my snazzy new phone isn't working? Joe's at the apple store again trying to get it working. We had vegetable lasagna for lunch..yuck! (I'm sure that there's good vegetable lasagna out there somewhere...but, trust me...it isn't here!)

Isaac is beckoning me...so, adios for now!

Joe's pulling night shift again (poor nurse). Isaac does not sleep. I think he's teething of top of all his other pains and woes. Poor little guy! He tried to put his whole fist in his mouth tonight...cracks me up!! Joe brought in Mexican food tonight for dinner...what a SWEET husband I have. We're still looking at a Tuesday discharge (Wednesday morning at the latest). We're waiting for an opening in the cath lab. Isaac has a central line in place still that has to be surgically removed...and it has to be done in the cath lab. Maybe we'll luck out and they will have a cancellation tomorrow...oh...that would be glorious!!! I can TOTALLY see the light at the end of this crazy tunnel! We're almost home! I've never wanted to go back to Las Vegas so much in my life!!!
Back to Isaac. Still just a cranky fellow. (I seem to say that alot). But, he is. We're allowed to walk around the hospital now. So, I take him on a nice wagon ride...and he cries the whole time. I hold him, he cries...I put him in the bouncy seat....he cries. I put him back in bed...he kicks his feet...and cries. It's not a "I'm hurting really bad cry"..it's a whiny, "I'm just feeling icky" cry. And....really...if I had all that done to me...I'd be a little whiny too. So, I just pat his bum and talk to him until he finally decides he's finished. (which hasn't happened yet...but, Joe has to hear it all now!!!)
Notice in the pics how he puts his hand on his forehead...as if to say, "it's just tough being me!"...

The wireless is still down in the hospital...good thing I have my snazzy phone. Isaac is still a cranky bug...but, when I munch on his feet or neck ...he will start laughing! He NEVER laughed before. I almost wanted to cry! Dr. Mayman was right...he is going to turn into a totally different baby! Joe is at rmh getting some much needed rest. I can't wait to get home!! I'll post a longer post tonight when I can type on the computer....but, you have the basics...isaac is awesome!

I'm SUCH a dork!! I'm at the RMH (Joe's pulling night shift again) and I have internet access...but, I left the camera in the room! Well...I know you guys are waiting for pictures...but, I'm not going back. We'll try again tomorrow!
As for Mr. Isaac....he's off oxygen (again). Satting in the upper 90's (like a champ!). He's off all of his iv meds...everything he takes now is through his g-tube...which is: (drum roll please....) prevacid, lasix, aldactone, methadone, ativan, potassium (which will soon be stopped), baclofen, prednisone, some other type of phosphorus potassium something, and two different breathing treatments every 6 hours. WHOOOO! They said that it could take a couple of weeks to get him off the narcotics and months to get off the breathing treatments. It appears that the lungs take quite a beating during the unifocalization surgeries and need help staying puffy! This is all nothing that we can't handle....BRING IT ON! Isaac's SLOWLY gaining back his weight. Not yet up to 14 pounds yet, but we're working on it. He's been on continuous feeds...where we give him 35cc's every hour. We're doing to start compressing that tonight where we will give him 70cc's over 30 minutes every 2 hours and then tomorrow, we'll give him 105 over 45 minutes every 3 hours until we get to the feeding schedule that we were on before we got here...150cc's over 1hour every 4 hours. (I can't believe I got all of that straight!). He's still VERY cranky. It's the drug withdrawals and the steroids that he's on...he better be glad that I love him and think he's cute! I try holding him each day and he won't let me...he just screams louder until I put him back in the bed snuggled up with his stuffed animals. (What a stinker!). His hands don't stink anymore...if you were wondering. But, boy...I can't wait to give him a bath. I'm sure that he's got things growing in all kinds of places! We changed his mickey button to his new size...except, now that he's lost weight...the button doens't fit very well...there's a little leakage around it. So, Joe and I are changing the dressings alot and the wound nurse will be by on Monday to see if he needs a different size. It's just a little raw around the edges...nothing like it was last week. All in all...he's doing good. They are trying to get us discharged on Tuesday...and I can't wait!!!
See you guys then!!
(I'll try to put on my thinking cap and remember the camera tomorrow...but, you know how my mind works lately...)

My sweet Joseph took the night shift with Isaac...I don't think that either one of them got much sleep! The hospital wireless is still down. Urrgghhh. I have Xmas shopping to do!
Isaac seems to be doing really well. I'm trying to get off oxygen...then they might let us sleep at rmh at night and spend our days here. Wouldn't that be a treat! I'm sure its wishful thinking....but, I'm still going to ask. He has been fever free for three days now!!! And he spends his days watching Yo Gabba Gabba.. What can you do?? I ate some fabulous pie last night Cindy...joe didn't tell me there were cookies until he tried them first! (I'm never going to make it into my skinny jeans!)
I'll bring the computer to rmh tonight so I can upload some pics....he looks SO much better.

We changed rooms again today. We are now in a room with only one other baby. Our plan is to just chill over the weekend with hopes of going home early next week. We did an echo today and lung profusion scan....I think the results from both are fine (or at least I haven't heard otherwise). Isaac was off oxygen for a little while today....but, now he's back on. We will have the weekend to get him off! Thanks CIndy for the pumpkin pie....I intend on eating it all by myself! The wireless in the hospital is out again and I'm typing on my snazzy phone.... But it just takes SO long...so, I'll type more tomorrow.

Happy Thanksgiving!!!
I forgot to tell everyone that Isaac was weighed yesterday and weighs 13.9 pounds. He's lost 3 pounds!!! (or did I tell you??) I can't remember...but, he does like tiny now. No more big head! He's sleeping really good today, not as cranky as he has been for the last few days. We have an echo scheduled for tomorrow and a lung profusion scan for Monday (I hope)...and all else staying the same...we could be out of here early next week. He's still on a lot of meds that need to be tapered more, his inflammed lungs need to settle down, and the fever needs to stay away!
Enjoy the pic of our Thanksgiving feast. It's almost comical...but, I am SO GLAD that we have this to eat. (Most of this town is closed down...we're not in VEGAS anymore!)
Isaac is only on 1/8 litre of oxygen!!! He'll be off by tonight or tomorrow! It's SO AMAZING to be looking at such a pink little baby! No more blue lips! It's been fun seeing old faces again...but, it will be nice to only come back for "tune ups"!!!

I completely fell down on the JOB!! We got moved upstairs to the IICU room on 3west!!! They said that we could still be here for a week...but, we're getting closer to the door each day! His fever hasn't returned yet today..but, they did decide to change his antibiotics to make sure that he wasn't fighting an infection. He's still a bit cranky...the drugs...he'd like more. The occupational therapist came by to play with him this morning...and I took the cutest picture of him sitting up (with assistance). (I know...just teasing you about the picture and not posting it yet).
He's doing good. He's sleeping right now and I'm SO GLAD to be in this room. Joe has already landed and I'm sure he's fighting his way to the rental car lot.
Eli and I had the cutest conversation last night. He asked me if Isaac's heart was all fixed....and I said, "Yes...it is all fixed." Then, he asked again, "Are you sure?? His heart is really fixed?" And again, I said, "Yes...his heart is all fixed." Then, he said, "Good...now I can stop washing my hands!" I laughed so hard and then had to explain to him that we still had to wash our hands to make sure that he doesn't get any kind of other "sick". How cute was that???
Joe was able to go to Eli's Thanksgiving Day program in his class this morning. I'm so glad. They video taped it for me...I can't wait to see it!!

On a completely other note...I haven't done any of Christmas shopping yet. And, if there are talks of us being here another week...YIKES...looks like it will all be done on toysrus.com!! (thank goodness for free shipping!)

I held him...and then I put him back. He was feeling really warm to me and was just squirmy and fussy. So, we checked his bum temp (even though we just checked the armpit temp)....and he has another fever. urghhhh! So, Mr. Cranky-pants fussed for a while until he finally dosed off. The fever could be from the drug withdrawals (as could the cranky-pants we was wearing today) or something else could be brewing. So, we gave him tylenol, his scheduled dose of ativan, and sent a culture of his broviac line (the last line in place) to the lab. I hope it's just the drugs causing the fever! So...now, he's snoozing (in the bed) and our door is closed...so, he'll get a good nap in. They should start up his feeds later tonight. But, all of his blood gases look good and I think this tube is staying out!!! YIPPIE!!!

The vent is out. Right now he is on two liters of oxygen and looking good. He still sounds really junky, but he will be able to cough now. So, now I'm just looking for a rocking chair so I can snuggle him.

We just pulled Isaac's last chest tube. Now...we wait for the pain meds to wear off and we can pull the vent out. He was very alert and awake this morning....so, it looks like a good day! I will post again when the vent is out.

We decided to let Icky sleep for the night. (although he has to have all of his dressings changed...and he can't stand for anyone to touch him right now). Our plan is to try to extabate about 7am (before they start rounds--so, maybe 7:30 (because shift change is at 7). So, I'm trying to get into bed, get some sleep, so I'm out the door and ready to walk in at 7:30!!
The day that I thought couldn't get much worse, did...I walked out to catch the van that shuttles you to RMH. The minute I walked out the door and headed toward the van...she started it up and drove off. (I guess I was suppose to walk because I had four oreos for dinner). Then...when I thought this crazy day was over and nothing else could phase me...I look in the mirror. I have arm flap. I don't know where it came from or how long it's been there. I know this is a right of passage to womanhood...but, I'm not ready yet. I mean...I could fly us all back to Vegas with the way they were flapping!
I talked to the big boys tonight. Boy, do I miss them! (Thanks again to all the mamas that help carpool them to school...I'll be back soon to pick up the slack!) Chris is doing so good in school...I couldn't be prouder. And Eli recited the cutest Thanksgiving poem.
I will definately post in the morning after we extabate. Even if it's only a short one...just so you know how he did!

Well...Isaac decided that he didn't really like the plan that we made for him today. his central line that needed to be rewired first...decided it would clot and needed to be pulled out. So...no big deal...we just put another one in..Right?? Well...In the case of Mr. Isaac...it turned into an almost 5 hour ordeal!!! His poor little armpit is SO sore...but, one was finally placed. This central line takes an accurate blood pressure reading that is need in order to pull out the right arterial line. So, once the armpit line was placed, the RA line came out. Then, the armpit line decided that it was ready to stop working. But, we did get the RA line out with a reading first. SO YIPPIE...one thing is checked off our list. It's kind of up in the air if we'll extabate tonight...look at the time...it's getting a little late and he's been drugged up all day and hasn't had much real rest (fighting with us while in a drug induced sleep in not really sleep). But, I was glad that I was standing with him rubbing his little melon (even if he'll never remember it).
I'll post later tonight if we have any changes...but, it's ok if we can't try until morning.

Oh....do we have a busy day planned. First, one of Isaac's arterial lines are not drawing back (allowing them to pull blood)...so, they are going to come in to rewire it. Then, we will have the right arterial one pulled. After some time, we will then maybe pull the chest tube and then go for the vent. I could be rocking my baby to sleep tonight!!! Although, he doesn't like to be rocked....I will anyway...because I need to! I will keep you updated as the hurdles are passed.

Ahhh....Sunday...and it was a day of rest. I was a bit surprised when I came in this morning and they were still feeding Isaac. When they plan to extabate him...they hold his feeds. But, they decided to give him one more day to rest and get his lungs as strong as possible so that we can have success tomorrow!!! (fingers crossed, prayers said). He still looks sad and groggy. But, he didn't cry as much today...he actually slept most of the day. He gets mad when we move him...but, other than that, he's such a trooper. They increased his feeds to 24 cal (he's still getting 20 oz an hour continuously). His cultures they took a few days ago from his gunky lungs came back showing positive bacterial growth...hence the fever that comes and goes. He is on a 10-day antibiotic regimen...with 6 more days to go (I hope that doesn't mean that we have to stay 6 more days??). He had a fever when I came in this morning...but. wasn't warm to the touch. She took a "bum" temperature reading...and thank goodness! He could have had the fever yesterday and the armpit temp readings didn't pick it up. Sorry Isaac...but, I'm going to keep requesting "bum" temp readings for you!
He pooped again today! YEAH!!! I'm having a blast changing his diapers. I still can't hold him. And I'm SO short...that I can barely reach his melon to kiss him (i need a step ladder). I do put lavender lotion on his arms and legs everyday...and take a little and put in his hair to make the "do" that sticks up. (it's how I pass my time). You're lucky you haven't seen tiny braids in it yet...it's almost long enough again to corn row!!
I made a discovery a few days ago that's pretty gross. Isaac has been wearing socks on his hands so that he doesn't pull the vent out of his mouth. Well, I took the socks off one day...and OH MY GOODNESS...that stink that came from them! They smelled worse than his diaper. So, I washed them and let them air dry that day. Well, I let him hold my fingers...and his stink was then all over my hands! (totally gross). Well....his stinky smell came off of my hands...but, his still stink. So, today I took the socks off to let them air out...and they looked like raisins. He must be sweating alot. I kept them off all day and put them back on before I left. (In case he tried to hurry the process and pull the vent out himself). Any ideas about getting the stink out?? If the vent gets pulled tomorrow...the socks can stay off of his hands...but, I'm not sure how long the stink will stay in his hands?? (Oh...the things I worry about).
You should know that Joe bought me a big TUB of Butt Paste this trip. And I'm applying it generously...so, far...no bum rashes!!!
I think that's all that happened today. Pretty uneventful. Oh...I did buy a newspaper so that I could see all the holiday sales papers (just to look JOE)...and there weren't very many in today's paper. Do they all come out on Wednesday?? I mean...I will have Joe here on Friday to watch Icky...I could totally buy a new suitcase to carry back xmas presents that I shouldn't be buying...but, they'd be on sale!!!
Off to bed I go...One more call to check on Isaac before I dose off!

Well...I don't know why Isaac was such a cranky bug today...but, he started up again crying...we did a quick suction...and like magic...he fell asleep. The respiratory therapist came by also and said that his vent settings looked good enough to maybe try and extabate tomorrow. Isaac is still getting breathing treatments every four hours, and with the constant suctioning...maybe our little man will be ready to breathe on his own tomorrow!
Guess what...he also just pooped again! (It was rather gross...but, 2 poops down)!
What I thought was going to end just yucky...is turning out better than I could have imagined.
Can you tell in the pictures how horrible he looks today. I'm not sure if it's because he's been crying or because he doesn't like the vent or if it's the drug withdrawal. Either way...he looks quite pitiful.
I was planning on pulling an all-nighter...but, he's finally settling down, so I might start heading back to RMH about 10pm. I love it when I can leave without feeling like he's going to cry because I'm not there. (you know...it's just not a normal feeling to leave your baby somewhere else...)
**I almost forgot to tell you (or did I??) He's sucking on his pacifier that's attached to the frog (while the breathing tube is in his mouth....does he have us wrapped around his fingers or WHAT!

Isaac's been crying all day. It just breaks my heart. He'll sleep for about an hour or so and then just turn red and try to cry....but, he can only tear up...he can't make a sound because of the tube...oh..and it just makes me want to cry with him.
He did get his foley out (the pee tube) and he's peeing like a champ. They are lowering his vent settings in hopes to try and get it out by tomorrow or Monday. We are fortifying his milk with enfamil to 22 calories. I can't WAIT for Joe to come down...I have a few jobs for him to do for me when he gets in. It's been another LONG and stressful day...but, I'm seeing the light..it's sooo close. I can't wait until Isaac's vent is out and his chest tube is out, so that I can snuggle him and put him in a wagon and take my butterball home. Joe is taking the boys to church tomorrow...so, maybe my prayers will be answered. I'll post later tonight if we have any changes....but, I just hope that Isaac can get settled and find some peace tonight.

So...I just called Julie..and Isaac POOPED!! He's been holding it in for almost a week..and boy, I bet that was a STINKY diaper! I'm so sorry Julie!!! But, maybe that's why Isaac was a little cranky tonight...he had a tummy ache. Mystery solved. Now...if we could get this little guy to breathe...we could be home to eat Thanksgiving BUFFET style in Vegas....I've been dreaming of that moment! (But, if we're still here...Boston Market has carry out...and you guys know i LOVE Boston Market!)
Now...I am going to sleep!

I still asked the names of his antibiotics...twice...I just forgot (sorry mom)...but, they must be working, because his fever didn't come back today. Tonight, we got moved to an isolation room...you'd think that Isaac would have gone to sleep when put in a dark, quiet room...but, NO...He was being a cranky bug and crying, so we gave him versed. Nothing. So, he's still crying...so, we gave him morphine. Nothing. That little guy is still awake watching Yo Gabba Gabba! Julie (our night nurse) actually knew what this cartoon was...Sorry sweet Julie!!! I hope he falls asleep soon. He's still really congested...but, Connie's been giving him suction and breathing treatments. So...she'll get that gunk out!!
It is the time for Thanksgiving...
It's been a REALLY LONG week. I've been alone with Isaac since Tuesday night, my back misses my "sleep number"bed, my baby has his tube back in his mouth, I miss my boys...I'm a wreck. I'm sorry about my venting and ranting. I LOVE Stanford, I LOVE ALL OF OUR NURSES, I am thankful for all the series of events that have led to this moment.
Two months ago I was able to see the ultrasound tech from the OB doctors that found Isaac's heart defect. And I just came up to her and hugged her..and started crying. I told her that because of her...our baby was born at the right hospital and was led to the great surgeon and great hospital that would ultimately fixed his heart. That made her cry...we were both blubbering gals! I'm so thankful for all the heart mamas that we have met and all the guidance and friendship that they've provided. I am thankful for Dr. Acherman and the reassurance that he gave us at every ultrasound of Isaac's heart while we were pregnant. (He kept us sane--well, as sane as we get). I'm thankful for our OB doc that delivered Isaac...even though he made me have contractions for WEEKS...I'm still glad that Dr. Schwartz was there for the happy delivery day! As much as I can't stand the nissen-fundoplication...I am thankful for the g-tube and the chub that it has put on Isaac. I tear up every time I think about all the surgeries that Isaac has had, all the time we've spent in hospitals and doctors offices...and what a happy baby he is. Although, I certainly am not thankful for his defects and the struggles....but, I am thankful for all the people we've met that have made his life easier...and I am thankful for the kind of parents that Joe and I have turned into because of this defect. I would never been able to imagine how this life would feel and it's hard to explain to people the world we live in and the impact these baby dolls have on our lives. I never intentionally want to sound negative or unappreciative of anything or anyone...but, sometimes the stresses of MY everyday life can turn me into a little bit of a pessimist. I'm sorry If I rant and complain too much on this blog. This is Isaac's journal and my way to remember the times we share...the good and the bad. So...with a thankful heart...for all the people that help me keep my baby happy and healthy...no more stinky rants. If I have a bad day..I'll whine and whine to Joe. I'll keep Isaac's blog as happy and funny as I possibly can.
With that said...I need to call and check on my little guy...boy..I hope that he fell asleep!

OK...Isaac's heart rate and bp have gone back to normal. He's back on the vent and he is breathing a little over the rate of it...so, that's a step in the right direction. He was put on steroids and breathing treatments today...he's a wheezing little guy today. I hope that's not one more thing we have to add to his "list"!
Nurse Libby is taking EXCELLENT care of us. Isaac must have tired himself out last night trying to breathe...because, he is sleeping so good today. We have started his feeds again...he's getting 20cc's an hour. Oh...he'll be able to fit in his skinny jeans when we get home! We changed his chest dressings this morning..and his incision is very long, but it is healing great! Maybe Mr. Isaac just needs a few more days to rest. His lungs are just wet...so, he's still on extra dieuretics and that along with the steroids should help expand and dry up those lungs. (now...I just hope that Isaac was listening to those directions!). I'll post again tonight when they round again. But, our favorite card, Emily, is on tonight...and she'll fix Isaac right up!!!
Oh..and all the cultures they have sent to the labs have still come back negative for infection. They have no idea why that fever comes and goes. But, he's still on a broad spectrum antibiotic. (I'll find the name MOM!)