Busy day...

Ok... so not quite busy... we had to go to the pediatrician and that's it. But it was a chore to pack up all the feeding machines, medical docs, and baby Owen and get out the door on time. I had the idea of going to Target afterwards, but as you see in the picture... Owen was doing what I was thinking... NAP TIME!!!

The pediatrician was awesome! I followed Jean's advice and went in the employee entrance to avoid the germs of the Dr.'s office lobby. Thanks for that advice!! :) Owen has gained one pound and one inch in his first month...which is pretty good considering. OH, and night 2 at home, he slept through the entire night in his crib again....with no spitups.

We Survived

We survived Owen's first night at home!! He slept through the night but we did get have a pile of laundry this morning after 3 yucky diapers, 3 mucus pukies, and spilled formula... but we did it!

This morning is another story...

I burnt 6 pieces of toast, Owen pulled out his NG tube (so I had to put it back in), he's gone through 2 outfits, and now he's sound asleep on Kamryn's chest on my bed. I have yet to eat or shower and it's already 9am...yikes. At least the kids are fed, Owen had his meds on time, Carson got off to work in one piece (he did forget his lunch though) .... so we'll say it's been a success!

His weight today was 3.63kg which converts to almost 8lbs!! YEAH!! (assuming I weighed him correctly)

Owen is finally HOME!!!

One month old and finally home....Owen was discharged at 11am today!! Kamryn and Carson were waiting in the lobby at Phoenix Childrens to meet us. Kamryn and Owen are busy getting to know eachother and Kamryn is loving the role of big sister. She has eagerly changed his diapers too! I am busy getting his meds on a schedule, blending formula and getting organized... ALL the things I love to do.

Here are some pictures of his first moments at home.

Home on Wednesday??

Word in the PICU is that Owen is coming home tomorrow!!!

All of his medical supplies have been delivered, RX picked up and his formula is being delivered via Fed Ex tomorrow. Thank goodness insurance is paying for the formula!! It's $30 for a tiny little can of it...and you can only special order it by the case.. (they don't carry it in stores). The worst part is, Owen doesn't even get to taste this "delicasse" of his formula. It's a shame.

HAPPY BIRTHDAY to Gigi (2/7), Alyse (2/22), and Sean (2/25).... we haven't forgotten about your birthdays... Feb just disappeared... we love you and have gifts for all!!

Preparing for Discharge

So we are taking our final steps towards discharge. Owen had his stitches removed today and didn't even flinch...he's such a trooper. I got all my post op appointments set up. All 6 perscriptions are ordered and ready for pickup. The feeding pump and formula (yep, FREE formula) are being delivered tomorrow. I will learn his special "recipe" tomorrow... formula comes in 20 cal and we need to make it 27 cal and add cereal.

Owen only had two spitups in the last 24 hours and has been extremely content. The nurses are so amazed at the fact that he never cries. They carry him around the PICU or he'll lay in his crib and stare at his mobiles when we're not there. He never cries unless something is really tickin' him off. He's such a sweet baby and we can't wait until he is home.

Kamryn is bouncin off the walls with excitment at the idea that she's FINALLY going to meet her baby brother she's waited "her whole life" for.

A New Look

I changed the look of the blog... Valentines is over so the hearts are GONE!!

Owen had a quiet weekend... he has progressed from spitting up formula to hacking up mucus... gross, but apparently this is better. I still think the new formula is making his tummy hurt and he needs to be on a soy or protein allergy formula, but no one listens to mom. He'll be released in a couple of days and then I can talk with the pediatrician and nutritionist about switching to a more sensitive formula. Meanwhile, he continues to gain weight and looks great. Can't wait to get him home this week :).

Good Communication

Today I was able to talk with Dr. Teodori (that's Dr.Pearl's partner) about Owen's situation. I also got to talk with the PICU Cardiologist on call today. They both agreed with my point of view. NO Gtubes or additional surgeries to correct his eating....yeah! He is doing fantastic and they are completely pleased with his progress... so he's coming home sometime this week.

All the cardiologists, surgeons and other Dr.'s will get together on Monday to discuss his discharge plans. He's coming home with a scale, oximeter, feeding pump, 7 medications, over the counter formula that we have to mix to add extra calories and baby cereal to thicken.

Carson and I also have to be CRP certified (done)...trained in placement of the NG Tube (done)...memorize all medications, doseages, and what they do to help Owen (done)... know how to use all the equipment at home (this I'm sure we can figure out).

This isn't going to be easy...but Owen is worth every second of it!!

A Bit Frustrated

This is how Owen spends the majority of his days... (not quite sure where the choo choo train outfit came from... but he puked all over it... apparently he's not too fond of it either) Check out those PERFECT lips!!

I missed Dr. rounds this morning. When I got to the hospital, Owen's nurse filled me in on his "plans". They are changing his formula, they aren't giving him my breastmilk anymore (WHAT...WHY?) and they upped the heart meds by .2ml. He's tolerating the heart med increase which is helping his heart funciton better.

I discussed ALL my concerns with Owen's nurse, four other nurses, and the resident today.... ALL of them agree with me. The final decisions are made by Dr. Pearl, the cardio thorasic surgeon, whom happens to be out of town until tonight. At least they all know how I feel and I'll talk to him when he gets back tomorrow morning.

We've been a bit frustrated these last few days, but I'm sure after a nice sit down with Dr. Pearl we can address our concerns and hopefully get on track and make some progress. :)

What to do?

Yesterday was a crazy day at the hospital... So we know the only thing keeping Owen in the hospital is his puking which is only a couple times a day and not too much. He tolerates the continuous feeds fine. They still have other specialists come in to look at him anyhow.

First... A few general surgeons come in and discuss a GTUBE placement where they pull the stomach to the sidewall and I feed him through his stomach. Then he says that in half the kids it makes the reflux situation worse... WORSE?... well then why put him through another surgery?? Then he mentioned if it does make it worse, then he'll go through another surgery to wrap part of his esophogus around his stomach to keep him from refluxing EVER... It's permanant? Um... NOPE... not going to agree to this. So they left.

Second...A Gastro Instensivist came in to talk to me but actually only introduced herself, didn't even look at Owen and went in the hall to talk to the resident. I wasn't allowed to listen to their conversation which annoyed me a bit... they were talking about MY baby. So anyway... I still overheard their whole conversation as I convinced Owen to be really quiet for me. She said they DON"T put GTUBES in babies that young. Then they said that we'll try increasing his zantac doseage... which fine... let's try that. Then they said he may have protein allergies... I'm thinking, let's try different formulas, although I don't really think that's the issue.

Here's my point of view... he's only spitting up a couple times a day and in small amounts. A LOT of babies do this! He's tolerating his continuous feeds. They haven't even tried weaning him to bolus feeds which he may tolerate just fine if we work him up to them. He's gaining weight. All of his heart functions are as expected. I dont' see what the big deal is. I guess I have a lot of questions for the docs today. They are just going to hate me in the end, but I'm a pretty over obesessed mom. Carson is in agreement with me on everything too!!!

A few more days in PICU

Owen will spend a few more days in the PICU... at least. He continues to look and feel great... but they need to figure out his eating. He's still on continuous feeds and they are going to try to wean him onto bolus feeds (where he has an empty tummy for an hour and then they feed him)every couple of hours.... S-L-O-W-L-Y this time. Last time it was immediate and that's when the puky was excessive. He only spits up a little with the continuous feeds and is gaining weight.

The plan: Get him eating every few hours though the NG Tube in his nose... if he continues to puky this up and doesn't gain weight then we have to look into the option of another surgery to place a Gtube through his abdomen. Then we just plug him in and feed him. I'm hoping he doesn't have to go through this, but we'll do anything he needs to gain weight so he makes it to surgery number 2.

The Dr.'s will spend the next few days tweaking his heart meds to help his heart function improve and also get his nutrtion figured out... THEN, when he is ready... we can bring him home!

It's almost time for Kamryn to meet her baby brother... she's been so patient for so long. I can't imagine what she's going through.

Upper GI

I called the hospital EARLY this morning for one of my many over-obsessed mommy checkups and they said that Owen was being discharged today.... yikes. It didn't seem like he was ready and I definetly don't feel prepared. It seemed less likely after I got to the hospital and talked to Dr.'s. He's still not eating by mouth and he's on continuous Gtube feeds (through his nose tube).

So here's how the upper GI went in radiology.... First I gave him a bottle with this chalky fluid for him to suck down... he sucked good, then "tried" to swallow and you could see on the XRay that he immedietly gagged and "asperated" (was the word the dr. used). So we stopped that and just inserted the chalky fluid into his gtube using a syringe. His tummy filled up rather quickly (small stomach) and then on XRay you could immedietly see it coming back up... so yeah... he's got some serious reflux. Then they use the syringe and suck the fluid back out of the tube... a little gross. So now the Dr.'s will review the xrays and I will kick back and wait to hear what we do next.

Another night in the hospital and I'm not too eager to rush him home. He is being well cared for and I'd rather the Docs get this eating thing down right rather than bringing him home and creating bigger issues.

Still learning to eat

Owen is looking and feeling fantastic. He's awake ALL day and sleeps ALL night. As long as he is burrito wrapped he's a happy man, but you open up that blanket, he's gonna tell you what's up! I can't really blame him when they're always changing his bandages or poking him with something. He's such a sweet, mellow baby. Speech therapists are supposed to work with his swallowing and gag reflex tonight and then do an upper GI test to see what's making him puke so much. Other than that... Owen is doing everything he can do to prove he's ready to go home!

Check out what a good job mom did at putting in my feeding tube today!!

Learning to Eat

Owen is now OFF of everything ( he yanked his oxygen tube out yesterday, he was over the prongs sticking up his nose) and he's just learning to eat again. It's pretty tricky to suck, swallow and breath at the same time. It's so cute to watch him concentrate so hard to try to get it figured out... then he gags... and then he pukes.

If you remember Kamryn at that age, you'll remember the non stop puking after EVERY meal. Not just spit-up, but some serious puking... and she turned out okay and always gained the necessary weight. So, here we go again with Owen... after every feeding he pukes it up. Dr.'s are tweaking his meds and working with different formula combinations to get this figured out and the speech therapists are working with his skills.

Meanwhile, I get to talk to the cardiologists tomorrow about all my discharge instructions... yep, DISCHARGE!! YEAH! He should be coming home soon. I learned how to give all his meds, insert his feeding tube, and use his oximeter (to monitor his heart rate and oxygen levels) at home. I also got a fancy hospital grade baby scale to bring home so I can chart his daily weight gain.... for some odd reason, I find this cool!

On the not so bright side... I overdid it, as always, and now my C-section wound is opening up and it's not so pretty. So, I'm going to drop by for a visit to the obgyn tomorrow and see if they'll just stitch it up for me.

Back at the hospital, Owen is "cooing" his way into the nurses hearts. They all just fuss over him and love him to pieces. Then he pukes on them... and they still adore him.

Happy Valentine's Day!!

Happy 1st Valentine's Day Owen!!

I love you Daddy... from Kamryn and Owen!

Happy Valentine's sweet girl!
Thanks for the gorgeous flowers Carson... I LOVE YOU!!

No more wires.. No more needles

The Dr.'s came and removed all of Owen's wires from his abdomen to his heart. He only has one central IV in his foot for his nutrition. Also, no more Lovanox shots in his thighs! They upped his oxygen today because he breaths 80-100bpm ... this is fast! I held him ALL day and I kept trying to match his breathing and after 2oseconds I was exhausted. The oxygen isn't helping... we think he's just a fast breather and the heart meds will help with that. I got a list of the medications he'll come home on... YIKES... a little overwhelming. I also learned how to cut and crush pills, add water to disolve and give them to him through a syringe. I'm a heart mommy in training.

Plans for tomorrow... Speech therapists will come and work with him on his feeds by mouth. He hasn't tried a nipple since before surgery and this is where these heart munchkins have the biggest issue. I'm hoping for more success!

Oh... and my milk is gone... after 2 weeks of around the clock pumping... Owen has been given ALL my frozen milk supply in 2 days. So.. I'm milk duct challenged and once again, I will have a formula baby. A bit frustrating as I've done everything possible to build up a good milk supply but the most I can get out is 1oz ( if I'm lucky).... and that's only on the right side. Left side is kaput and won't produce at all. I forgive myself of my challenges and will continue to pump what I can. They also notified me that they have to add calories to my breastmilk because it's not fatty enough...I haven't figured out how they know this, but I trust the professionals.

Thanks to the Phoenix Coyotes for stopping by the PICU today... I'm sure Owen didn't know the difference but there was some nice eye candy for me!! :)

Exubated!!

Owen is OFF the ventilator and doing fantastic!! We got his ART line removed from his arm and the sensor off his head. He's a bit sticky gooey from all of the tape and stuff, but handsome as ever. We both got to hold him again today and it was so nice to hold our little man again after a week. He still has oxygen and his gtube until he can feed through his mouth... but he seems much more satisfied. We also got to hear his little voice today..... his voicebox is weak from the ventilator, but he coos and ahhhs... which is adorable. We're one step closer to coming home so we signed up for CPR classes and finally started buying some baby supplies. WAY TO GO OWEN!!!
The respiratory therapist isn't choking him, he's having his back "pounded" for therapy!

Weaning off the Vent

They are FINALLY starting to wean Owen off the ventilator. He is looking great, his pulses are good, his stats good. Everyday, we get something removed! Today is was the wires in his stomach that lead to his heart... we got rid of a couple of those. Then, I so kindly talked the nurses into doing ORAL asprin rather than trying to invade his privacy by putting them up the other end. I'm hoping to have him exhibated (OFF the ventilator) tomorrow and get his ART line out ... (it's an IV that is in his arm and goes all the way to his heart).

Here's a picture of Owen taken today... he looks A LOT better than he did. The thingy on his forehead is a sensor to measure the blood to the brain (always good!) The tape on his face is holding the ventilator there... although he tries his hardest to pull that tube out... this (and the bandages on his right arm) is what I'm hoping to lose tomorrow.

Anything to make my little man more cozy.

Geez...

I was at the hospital ALL weekend long as Owen had a knowledgeable nurse, but one that continually disappeared. This only makes me nervous because he's still on the ventilator and you can't hear him cry. So when he gets mad, or in pain, he screams in silent, and if you're not RIGHT there then you would never know. GRRRR... that nurse made me nuts, and unfortunatly was his nurse all weekend long. It's a new week and a new day... I'm hoping for a more attentive nurse this week.

On the bright side, Owen had his chest tubes removed because he's not draining anymore. No more catheder and they removed his temperature butt plug thingy... YEAH! Everyday I convince them to get rid of a little more :). Still working on taking him off the ventilator. That's my goal today!!

Looking good

Owen continues to look good. Today no machines went off.. YEAH... that means he maintained all his stats and he's doing well. He's still on the ventilator because he spiked a temp last night and they did a chest xray. He has "cloudyness" in his chest so the ventilator will help get rid of that. We're hoping they exhibate him tomorrow and remove his drainage tubes from his chest. This will make him a little more comfy cozy. All in all... GOOD DAY!! Let's just hope for a good night.

The Day I Became a Heart Mommy

I found this poem on one of my fellow heart mommy sites.... It describes exactly how I feel!!

One day my world came crashing down,I'll never be the same.

They told me that my baby was sick.I thought, "Am I to blame"?

I don't think I can handle this.I am really not that strong.

It seemed my heart was breaking.I have wanted him for so long.

I will not give up on this child.I will listen to your advice.

I will give my little man any chance.No matter what the price.

I will learn all that I need To help my baby thrive.

I'll even use that feeding tube.My child must survive!

Will he need a lot of therapy?Will he gain the needed weight?

Please God, help me do this.As I accept our fate.

When the monitors beep at night,it serves as my reminder.

How many parents would love that sound.Tomorrow I will be kinder.

As another Angel earns his wings,I run to my baby's bed.

I watch him sleep for quite a while.I bend down and kiss his head.

I cry for the parents whose hearts have been broken.I look to You wondering why?

Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life,and guide us through each day.

My mind says savor each moment he's here,but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room,to sitting by his bed.

From wishing for a good nights sleep,to learning every med.

From wondering, "Will he be alright?",to watching him reach out his hands.

With every smile my heart just melts,despite life's harsh demands.

For all who see that faded line.I look to them and smile.

You see my child is loved so much.I would face ANY trial.

That scar I trace with my finger(It's the door to his beautiful heart).

God must have known how much I'd love him(Just as He loved him from the start).

A heart mom is always a heart mom.Now wise beyond her years.

For those who have angels in heaven,Our hearts share in all of your tears.

Every day I will try and remember,I was chosen for him (and no other).

I will always embrace that beautiful day.......When I became a "Heart Mother".

Update...

Owen continues to do well. He is still weaning off the ventilator. He should be completely off tomorrow...Sunday at the latest. You can tell he hates it but they use it to help suck some of the yuckies from his chest. His color, pulses, circulations and oxygen levels are all good. He is completely off the pain medicine drips and they just give him morphine as needed through his central IV line.

My heart breaks when he cries because you can see him crying and he turns bluish... but it's silent. The ventilator goes through his nose into his chest so when he cries you can't hear anything. I hate it!! I just hold his little hand, rub his head and whisper to him... this calms him down. I can't wait to start getting these tubes removed and IV's out. He got a shot in his leg today and didn't even budge, I guess he's used to all the needles by now.

He is starting to get breast milk fed through the tube going down his other nostril. A little at a time to be careful not to upset his tummy. He seems to be doing fine with this so I can start nursing as soon as he is feeling a bit better and again... OFF the dumb ventilator.

As for me... my life revolves around pumping milk, taking care of Kamryn, spending my days at the hospital with Owen, trying to keep up with housework, and finding time for rest so I can heal from my C-Section. Although it is brutal right now, I wouldn't trade it for anything!

Chest Closed

Dr. Pearl closed Owen's sternum at 1:30 today. He is still doing good. Hopefully he'll wean off the ventilator by the weekend. I can't wait to hold him again... it's so hard to just hold his little hand and not be able to pick him up and snuggle him. I'm glad that he is getting such great care and that he is comfy.

Also, THANK YOU to all of Carson's co-workers for the baby shower today! We really appreciate everything.

Owen's Equipment

Owen continues to do well. His sternum remains open and his tubes drainage is low (this is good). Here are pictures of all his machines... like I said before, a bit overwhelming. The machines to the left of his bed are his ventilator machines....this is what keeps him breathing. They are slowly weaning him now and after the chest is closed they will do a "rambo" wean... which means they will quickly wean him off.

The machines to the right of him and the second photo show all his IV drips. Today I counted 12 different IV machines pumping different meds into him. Some are pain meds, some are to keep his heart working properly, and some for nutrition (if you click the photo you can enlarge it and see the names of all his meds... for those of you interested). I am impressed with the medical team and nurses...they are so caring and supportive of not only Owen but are always stepping in the room to make sure we're holding up okay as well. The nurses never fail to answer EVERY one of my questions... and I have a A LOT of them.

As I mentioned earlier, the post op pictures are a bit disturbing so I opted not to post them... but I couldn't help but snap a shot of his little hand. This is the only part of his body not covered in IV's, tubes, stickys or machines. Whenever I put my finger there he holds on and I just talk and sing to him all day.
We are grateful that he is doing so well! Kamryn gets to talk to him on the phone and she'll get to see him through his hospital window in another week when he looks a little better.

Thanks for all of your love and support.

So far so good

Owen is still stable and is continuing to do well. I talked to him and held his hand today and he opened one little eye to look at me... so it's good that he is responding. Still no word on when they will close his sternum or start weaning him off the ventilators. Just wanted to let you all know he's doing well. We're proud of our little fighter.

Recovery

Owen is stable and doing well! We got word at 8pm that he came off of heart/lung bypass okay. Then at 9 we got an update from his surgeon that he was stable and doing well. He is on a ventilator for a few days and his sternum will remain open until Wed or Thur of this week. Then they will close him up and start getting him breathing on his own. NOTHING could prepare us for the first time we saw Owen post op. He has his own nurse caring for him in the PICU and he is sedated. The next 24-48 hours are critical and we can only pray that he will be alright. He is a strong little man and we are confident that he is going to fight through this.

We LOVE you Owen!!!

I opted not to post any post op pictures as they are pretty intense. We'll post more pictures as soon as he is looking a little better.

Surgery Update

Owen went into surgery around 3:00pm. We just got an update that he is on ECMO (heart and lung bypass). No idea how long the surgery will take but we are anticipating a late night. Thank you Larissa, Mom and Dad for taking care of Kamryn for us! We can't wait to get home to give her snuggles.

Today has been an emotional rollercoaster...lots of tears have been shed. We were told at 11am that his surgery might get bumped because there weren't enough beds in the PICU. Then we were told that there was a baby in surgery that might not make it so we would get his bed. This made us feel terrible! We just got word that the baby made it through and another bed opened up. So they took Owen back a little later than scheduled.

Carson and I both have a peaceful feeling about things.

Surgery Day

It's hard to believe that Owen is one week old tomorrow. He is also scheduled for the big surgery tomorrow (Monday) at 1:30pm. We are exremely nervous, but are trying to be optimistic. The surgery is called the Norwood Procedure and is the first of his three open heart surgeries... we expect he will be in surgery for about 5 or 6 hours. We will post updates as soon as we can and let you know how he is doing in recovery. Please remember Owen in your thoughts and prayers!!!

Daddy's Boy

I just wanted to start off by saying THANK YOU to Carson for all that he has done for us the last week. He has been there for Me, Kamryn and Owen more than I could ever imagine. Driving us to and from school and the hospital... keeping me off my feet so that I can rest... being there for Kamryn and Owen when I can't be. He took the whole week off work to take care and spend time with his family. He is a great husband and daddy and I just wanted to say I LOVE YOU!!!


Here are some pictures of Daddy and Owen from today at the hospital. They had some one on one time while I was off "pumping" some milk for our guy. Owen also got to take his first bottle today... not much, but just enough to fill his tummy and he LOVED it!

We have a meeting with the cardiothorasic surgeon on Sunday morning to discuss all the final details for his surgery on Monday.