Pray for Owen

After 8 hours of surgery, Owen came into recovery "not okay"! After some fine tuning and LOTS of extra heart meds, he is stable. Please say an extra prayer for Owen!! We are taking things hour by hour. He is OFF of ECMO so that is positive and we just pray that he doesn't need to go back on it. PRAY PRAY PRAY!!!!

Surgery Day!

We took Owen back to the OR at about 8am. We got word at around 9:30 that they started the incision. We're just waiting for updates. Dr. Pearl came in this morning, answered all our questions and gave us peace of mind before we put our precious Owen in his hands. Owen should be in surgery for about 5 hours and then off to the PICU for recovery. Carson and I actually have TIME to spend together today and I can't describe how wonderful it is! Keep on praying for our little guy!!


You can visit my HLHS INFO post for more info on the surgery he is having done today. Basically they will connect the superior vena cava to the pulmonary artery that will deliver the blood flow to the lungs. They will also stop the heart for about 40 min to work on the tricupsid valve leak.

Happy 3 month Birthday!!

Owen is 3 months old today!!! I love my baby brother. I would do anything for him. :) I am scared for his surgery but know that he will be okay.

Love, Kamryn


Some facts about Owen:

Weight: 11lbs
Length: 24"
Milestones: SMILES ALOT
Holds up his head on his own
Rasies his eyebrows when he gets excited or curious
Chews on his hands
Loves to play with toys that dangle...
But Owen's favorite thing of all is his big sister Kamryn!


Surgery is scheduled for Wednesday at 8am. Remember Owen in your thoughts and prayers.

Quick Update

The weekend has been uneventful in the PICU...Thank goodness!! Owen continues to be stable, just plays and gives his gummy grin to anyone who will stop in and say HI! Dr. Pearl stopped in and said they may bump up his surgery to Wednesday as one of the babies got a cold and they can't do surgery on them. He even mentioned something about tomorrow afternoon.

Painful Day

Carson showed up at the hospital this morning and heard Owen screaming from the hallway. They were trying to get an IV as his other ones were shot. They had tried twice in his hand, four times in his head and finally got one in his wrist. Poor guy! When I got to the hospital after work, I was sure to let all the nurses and IV team know that they are not allowed to poke Owen in the head for an IV as they don't ever work and it's just cruel. As if that's not enough... they had to do a PICC line. This is an iv line that leads all the way to his heart. I made sure he was well drugged up and I watched the whole procedure... it was fascinating. For those of you that don't know...they first put a needle in the vein, then they use a numbing solution that feels like a bee sting (Owen didn't budge), then they thread a wire to open up the vein, then they cut with a razor blade thingy to open up the hole, then they thread a tube over the wire all the way through the vein to his heart, then they pull the wire out and presto...they've got a PICC line. The whole time, Owen just GLARED down Robert, the same IV man that pricked him six times earlier in the day. He's not on Owen's nice guy list. After this painful day... it turns out that the IV in his wrist has to go because they used the same arm for the PICC line... six pokes for nothing. Like I've said before... he's a tough little guy!!!

Passing Time

The one good thing about being in the PICU is that it forces us to relax!

Owen LOVES his bouncy seat. Check out his red bull in the background... this is Snort and Owen loves him.
Kamryn loves to rock Owen and watch spongebob. As you can see.. it holds Owen's attention as well.
When Owen cries... she hands him back and plays her DS.

Today they did an echo and I was able to see the leaky tricupsid valve and possible ways they can patch it up. I also was able to see his xray so I had an idea of how swollen his heart really is... it's pretty severe. We can only pray that this operation will help his heart function better... we're not ready to consider transplantation yet.

Surgery Date

I met with Owen's cardiologist and surgeon this morning and agreed to keep him in the PICU for the rest of the week and let him rest up for the big day.... MAY 1st! The milrinone IV drip is helping take the workload off of his heart by helping it beat a little easier. He has been resting and calm the entire time so far. Next Thursday they are going forward with the stage 2 operation, the Glenn, and Dr. Pearl can also see what he can do with the leaky tricupsid valve. There are some unanswered questions at this point, but hopefully as his heart takes a break, we can watch the echos and see where to go from there.

Meanwhile... here are some pics of his stay so far.

He only has his leads, blood pressure cuff, IV bootie on one foot, IV on the hand, NG tube, and pulse oximeter. Here is one of the IV's gone wrong. Don't worry, Owen was sleeping through ALL of this drama.
He always has a death grip on his wires and tubes.
Nothing beats good ol' daddy time!

Waiting for results

After an amazingly good night sleep....I came in at 6am this morning to find Owen with NO oxygen... yeah, he's back to normal. During Dr. rounds we decided to keep him on the milrinone, give him another unit of blood, and then we're going to do an echo daily for a couple of days to check his heart function. Based on the results of the echo we'll have a gameplan.

Plan A -- stay in the PICU a couple of days, then go home for a few weeks until the Glenn operation.

Plan B -- stay in the PICU for a week and get the Glenn done next week.

I told them my preference was Plan B -- I would love to get through the Glenn and on our way to recovery. Then we will also know sooner if the Glenn will help his heart SQUEEZE to improve. I always capitalize SQUEEZE cause I think it's a great word!! I know it's not technically called that, but it's my way of defining the issue.

Owen got a super cool mobile today and his nurse is incredible. She went "shopping" at the childlife center (where things are donated) and came back with a GIANT train blanket that somebody made, a new outfit and socks for Owen and a barbie for Kamryn!! Speaking of Kamryn... they removed the RSV restriction at the hospital so Kamryn can now come visit her brother as much as she wants.... YEAH for that!

Cath Update

Owen finally came out of the cath lab at noon. His heart repair and flow looks great. Then came the crappy news.... his heart SQUEEZE isn't so great. It's the way your heart squeezes and relaxes with each beat. On top of that his tricupsid valve is moderatly leaky which means they may need to repair this with his next surgery. Then more news came... Dr. Pearl is pretty sure he's going to bump up the next surgery to late this week or early next week. SHOCKER!! So, they're probably going to keep him in the PICU until then. Hey... whatever they gotta do!

So we came in for a simple cath procedure and now this is what we end up with....

2IV's -- one in the hand for his milrinone (they started this because it helps the SQUEEZE) and it takes the workload off the heart. The other IV is in his foot for his blood transfusion -- this took the IV team 4 tries!!! I refused to let them use his other hand because it's comforting for him to chew on his fingers... poor guy is restricted enough. Then they zero'd in on his forehead... Don't even think about it!!!!

Oxygen -- Yep... Owen has never needed oxygen before, but we were told prior to the cath that sometimes they end up on oxygen afterwards. Let me just say that it is a full time job keeping him from ripping that oxygen cannula out of his nose.

He's got IV drips, NG feedings, blood transfusions, leads (to monitor his heartrate), bandages on both legs from where the cath went into his groin, and on top of that... diaper rash. POOR GUY!!!

So tonight he is resting comfortably thanks to morphine and tylenol. I decided to come home and get a little rest because he has two nurses all to himself tonight. How lucky can we get!

So much for a quick update. Tomorrow morning they are going to do an echo to check out the degree of his tricupsid valve leakage to see what they need to do to fix it. Then we'll hopefully get a surgery date for the Glenn. It's all happening so fast.

Cardiac Cath

So after 6 hours of fasting, 2 hours of pre-op waiting and 30 seconds of watching Owen go under anethesia... he is getting his cath done. We pray that everything goes well and things look ready for the Glenn operation. Owen had a blessing last night and I think it helped ease my nerves more than anything else... thanks Todd! Owen slept through the night and most of the morning which was a blessing in itself. They're going to keep him in the PICU overnight to keep an eye on his vitals, but hopefully we'll be back home tomorrow.

I'll update as soon as I hear anything on the results. Dr. Pearl (the surgeon) and Dr. Lamers (Cardiologist doing the cath) will come talk to me in a bit with all the results and hopefully a surgery date for the Glenn. It's all coming up so fast... it's bittersweet... we don't want our baby to go through another open heart surgery (not that we have a choice), but we know that after he recovers he will be a much stronger baby boy. We are thankful that he is doing so well and pray that he continues to thrive. His weight at check in today was 11lb 5oz... way to go Owen!

Barium Swallow Study

Thursday morning we woke up at 6am to get ready to drive to PCH for Owen's barium swallow study. After getting Kamryn and Owen showered, dressed and out the door by 7 ... I was exhausted. When I finally got to PCH, Owen was starting to get MAD because he's not used to feeling hunger since he's on continuous feeds on his NG tube. So after STARVING for 3 hours, he was pretty ticked off!!! We finally got into radiology and they sat him upright in a chair and buckled him in. Immedietly they started shoving bottles of chalky liquid in his mouth and "expecting" him just to suck and swallow. NO SUCH LUCK!! Owen has his own ideas of spitting that yucky liquid out. He was fine with the pacifier so we used syringes to squeeze the liquid into his cheek. He then swallowed just fine. YEAH!! They tried thick, thin and ultra thin consistencies and they all went down the right tube. Ten minutes later we were done and I couldn't help but wonder why in the world it took since February to get an appointmenrt for something so simple. Anyway.... it's over with and I got a call from speech saying to only feed him 10cc's at a time and thicken it with 2 tsp of rice cereal per ounce. Hmmmm... he already has 1tbsp added per ounce...so do I add more?? Does it make it too many calories since he's already at 27 per ounce?? Why does eating have to be so complicated?? Of course, she had NO Idea of how to respond to my questions, so for now we're stickin with what we know! We see GI next Thursday and hopefully they can answer some of those questions.

Can't wait until after the Glenn and I can just demand feed from the bottle and have speech work with him weekly. We are very lucky that these are the worst of our problems!!!!!

Lil' Artist

Kamryn LOVES to be creative and has a special talent for art. Ever since she was little, she has wowed us with her paintings and drawings. For the second year in a row, Kamryn's artwork has been chosen for the school district art show. WAY TO GO!

Last night was the big reveal....

It's a self portrait in action made out of clay and wall paper.
Grandma, Grandpa, Gigi and Mommy came along and Daddy stayed home with Owen.
What a cute girl... and yes....still no front teeth.

Not so big.

Owen had an appointment with Dr. Stock today. Everything continues to look great! He's all set for his cardiac cath next Monday and we're getting a surgery date scheduled for May.

People always stop me and comment on how beautiful and SMALL our little guy is. Small? I always thought of him as pretty big for 10 weeks. Well, I guess it all depends on who's looking. When you look at the growth chart, he's only in the 20% ish for his weight and too low to qualify for his length. But... for a Hypoplastic baby... he's just plump and perfect.

Dr.'s appointments always wear him out...

Here's the BIG YAWN...
And he's OUT!
Time to get our taxes done before tomorrow.... aaahhh. I'll admit I'm a procrastinator, but this time, I've just been too darn busy.

10 Weeks Old!

Owen is feeling better each day. He slept from 8pm-8am without waking up... THANK YOU OWEN!!! I was starting to feel the lack of sleep catching up to me. He is gaining weight like crazy and is now 11 lb 2 oz. He's gaining at least an ounce or two a DAY!

He decided he had enough of his nose tube this morning and YANKED it out. I thought this would be a great time to take some pictures of him. This is what I got.....

Better luck next time.

We're home ... again!!

Owen was discharged today!! He's still not feeling well at all. Mostly just his tummy is hurting...poor guy! We love our docs and nurses from the picu, but hope to not see them again until May!

Little buddy looks so out of it and just not too happy :(,

Update

Owen had his upper GI done and no surprise there-- he has reflux. The good news is... more fluid went DOWN than UP. Then the GI doc came in and said he probably just has the little tummy bug going around, especially since Kamryn had it. Oh... and he has gas! Who would have thought we'd be in the Intensive Care Unit for GAS!! I have to find humor in it. His echo was beautiful of his heart function... which is always good news. He's overly exhausted and so we're going to give him a little bit of benadryl tonight, just to help him rest easier. He has been a little more content, but still not his happy self. I'm hoping with a good night sleep that he'll feel better tomorrow. I don't feel comfortable going home until he gives us at least ONE smile.

Kamryn has Tera Nova (AIMS) testing starting tomorrow. She informed me that they will get to chew gum because gum makes you smarter! Wish someone would have told me sooner.

PICU Day 2

Owen is still really crabby...poor buddy! He hasn't spit up since 4am but still has a tummy ache. I'm grateful that his ONLY issue at this point is a tummy ache, but I feel so sorry for him. He woke up every hour last night with a painful cry and gassy. The nurse kept wanting to give him drugs to help him sleep, but I feel like he is already on enough meds. I gave him a tiny bit of benedryl and gas drops to help relax him. We are going to radiology for an upper GI at 1:00 and I'm sure they're going to find out that he has reflux...surprise, surprise! We already know this, so I'm not sure what they are looking for. Sometimes I wonder if bringing him is the right thing to do, because they just do the same things for him here that I am doing at home....only we don't get any rest. I know that we need to rule out other things as well though and it's better to be cautious with this fragile guy. Oh...and he finally got his blood that I didn't want to wait around for last Monday. I think they are going to give him one more unit to see if it helps.

No idea of a discharge date or time. If he still isn't spitting up by tomorrow AM, I'm going to try to get out of here and back to the comfort of our own home.

Back to the PICU

Owen continues to puke and be cranky...poor guy. Today he had really dark urine which would indicate that he's dehydrated... so back to the PICU we go!! I'll keep you all posted.

What 's a Mom to do?

Owen has been puking nonstop since last night. Now he's all horse and his cry sounds so sad :(. He doesn't have a fever. He's been pretty cranky all day and either sleeps, pukes or fusses. I keep checking the placement of his NG tube, but that's okay. Poor guy...Nothing makes him happy. He's content snuggling for a while and then crashes. I can feel his little tummy rumbling constantly. I feel so sad for him. I don't want to rush him into the ER quite yet because then he's gonna get poked and prodded. What's a mommy to do??

On a happier note... Kamryn woke up with a little tummy ache, but was back to her old self a few hours later. That girl has an incredible immune system!

She dressed up in her ballet costume from 3 years ago , put on my heels, makeup and pretended to be going to work. Hmmmm... where does one work when dressed like that?? A restaurant of course! Kamryn made menus and Carson and I ordered lunch at the kitchen table. She served us....then we got the bill. My total was $24 for a cheese stick, jello, and a diet dr. pepper....this was one upscale dining experience! I admire her creativity!

Back to Work

After 10 weeks away from work... I jumped back into it today! I would like to say how wonderful it was, but I'd be lying. It wasn't aweful, but pretty close to it. I couldn't remember any of my compuer logins, it took me FIVE desk changes to find a computer that worked with my profile, and then I got settled and my brain went blank. What do I do here again???? Seriously, couldn't remember how to do my job. So.... after about an hour of fumbling around... I got back into the swing of things.

To make matters worse..... Carson called and said that the school nurse called and Kamryn was puking with a 101 fever. He picked her up and came home. Kamryn called me an hour later with the most tearful voice begging me to come home :(. Broke my heart.

By the time I got home with jello, crackers, gatorade (you all know the drill)... Carson passed Owen and Kamryn off to me and said "I'M DONE". Poor Hubby... the first day he has the kids ALL day and it sure wasn't easy on him.

Tomorrow is another day and I'm determined to make it a better one!!!

Yucky Ol' Tube

Now you see it... Now you don't...
Look at this little chunky monkey!!

It was time to replace Owen's NG tube tonight... I hate to do it, it's horrible!! I removed the old one and gave him and his face a break from all the tape... then I got ready.

Take 1... I got it in place, ready to check to make sure it was in his tummy and he yanked it out. Darn he's a strong little buger.

Take 2... I got it in place, got the syringe and the stethescope, checked placement... GOOD... and then the tape on... YEAH!! Success! Thanks to daddy for holding down your arms, or else we would be on Take 3 or 4.

Then the screaming continued... and continued... and then he fell asleep with a full tummy (thank goodness for the tube!)

Therapy

Today the state DDD (department of developmental services) came to our home to evaluate Owen. Good news... he qualifies for FREE in home speech and physical therapy! Even better, we will be assigned a coordinator who makes all the appointments and schedules the therapists to come to our home. I am very grateful!!
Kamryn and Owen adore one another! They make eachother smile everyday. Owen gets very excited whenever she walks in the room and Kamryn lights up when he smiles at her!! Let's just hope I can say that in 8 years when Kamryn is a teenager and Owen is a wild 8 year old boy.

Smiley Boy!

Owen at 2 months!! What a sweet smiley boy!!