Friday Night Update . . .

Tyler is still doing great! And practically healed... seriously.

He was totally off all oxycodone by Wednesday afternoon and Wednesday night I gave him a dose of Tylenol instead. On Thursday, I didn't do any Tylenol at all. Now, currently late Friday night, and he went without Tylenol today too! If that's not a tale-tale sign that he's better, I don't know what would be!

He's crawling all over the place, for no more than 45 minutes at a time. (I limit him, otherwise, he'd be going, going, going.) Also, he's also enjoying his baths again.

Many thank you's go out to the awesome support system we have and the many kind and polite comments we've received over the past week, both face-to-face and here on Ty's blog.

Doing great! Tuesday Morning Update:

Tyler is doing just wonderful! He is receiving very little pain medicine for comfort and is otherwise eating and playing just as before. He can take a bath tonight as part of his normal routine too!

Circumcision Day and Report

I am happy to report that we are HOME and everything went better than expected!

Surgery started at 10:20am and he was in the post-anesthesia recovery unit by 11:05am. We got to go in and see him at 11:45am and stay with him until we were discharged at 1:30pm.

He's just a tiny bit raspy from being intubated, and so far I've done the first diaper change and home care.

Let's see:

On October 30th, he'll have a check up visit with the surgeon.

He'll be on clear liquids until dinnertime, when at that time I can slowly reintroduce his Pediasure feedings.

I am just BEAMING! Now, here's praying to a smooth five days with no bumps!

To our friends and family out there still following this blog for Tyler... we want to thank you!

Big event happening in the morning . . .

Tyler is scheduled for his circumcision at 9:00am tomorrow (Monday, Oct. 20th).

You may remember that he was unable to have it performed when he was first born because of the unstableness of his heart.

It will be a very, very huge ordeal for him as far as the surgery itself. He'll be completely anesthesized and will be put on the ventilator for the surgery. The anethesiologist from the heart team nixed the idea of using conscious sedation with a local, because of the stress it would have undoubtedly put on his heart.

SO, if you've got some time tomorrow morning... please say a little prayer or send him a thought (or two) for a completely UNEVENTFUL operation and a sucessful, simple extubation after he's completely awake.

I am one nervous Mommy right now.

PS: In a day or two, I will update the blog about how well his first Feeding Clinic appointment went as well as last week's Cardiologist appointment.

365 days ago!

One year ago today we embarked on a journey we'd only dreamt about!... Bringing home our little miracle child for the first time after spending 38 days at Children's Mercy Hospital! Weighing 8 lbs 10 oz. at birth, he came home weighing just under 7.5 pounds. One year later, he weighs 18 pounds and is the sparkle of our eyes!

There is so much to update about!

Tyler started officially crawling on September 12, 2008 and he loves it! Shhh... it's a secret, but so does Mommy! I never thought that (as a parent) I would look forward to the day when I could say, "My baby is mobile!" But, I did! Being able to watch him conquer milestone after milestone each month is such a sigh of relief and it means more than I can put into words. I am very blessed.

The teeth just keep popping thru. I've always said the only thing about parenting that I don't enjoy is teething. And that's the truth! But this lil' booger wakes up practically every week with another one skimming the gumline. Tooth total is now 5. Three on top and two on bottom. I give him another 3 days and the 4 tooth will emerge on top bringing the total to 6. Getting more teeth has really helped him in the eating department. He's doing much better and he's gaining confidence everyday. It's evaluated that he's eating and drinking at an 8-9 month old skill level. Not bad, but there's definately room for improvement!

His first Feeding Clinic appointment is Wednesday, Oct. 8th. Attending the appointment will be an OT who specialized in feeding issues, our Nutritionist, and a Psychologist. This will be the first of many visits, and we are excited to start feeding therapy.

His next cardiologist appointment is the following Wednesday, Oct. 15th. We'll have an echo and we'll better know how stable and well-functioning his heart is six month post-Glenn. Pray for a healthy echo and overall physical check.

I will post an update after those appointments to let everyone know how they went. Thank you all for your continued thoughts and prayers. We still feel them and we believe that you're getting thru to the Man upstairs!

Remembering 9/11 on this 7th Anniversary

Driving Jay to Preschool today, Alan Jackson's "Where were you" song came on the radio. As I wiped a few tears from my eyes, I quickly remembered what I was doing when those horrid attacks occured on our American soil. I am so thankful for all of the couragous men and women who have served and currently serve in the Armed Forces. My heart still goes out to the many innocent victims who lost their life that day and their families who were left to carry on.

God Bless America!

Enjoy!

One Year ALREADY?!

You've sure came a long way...
Just look at your progress!



As you celebrate your 1st birthday,
we wish and pray for many more
years of laughter, hugs and kisses!

Happy Birthday Tyler-Boo!

Love,
Mommy, Daddy & Jarrett

Finally an Update . . .

Well since my last post, Tyler's gotten his top two teeth, and he's working on more now... AND the little boy is trying to blow kisses!!! So sweet!!!

Still not much to say in the crawling/walking dept., but he does do a funny side slide. Since he's totally aware of the g-tube button, he'll get on his right side and scootch. Reaching one arm out and pushing with his legs. Doesn't get too far yet (maybe a few inches), but hey, he's still improving the motion. LOL!

Let's see... We have his consult appointment for the circumcision on Sept. 4th and his first Feeding Clinic appointment is scheduled for Oct. 8th.

Tomorrow is his First Birthday! Both of us can't be more proud of the boy whom we watched struggle for life, yet grow & excel throughout the past 12 months. We love you Tyler!

Also, big brother, Jarrett, started Preschool on the 19th and he's enjoying it. Whenever it's time to go pick him back up, Tyler gets so excited! Tyler must miss all the noise and commotion! I mean, who wouldn't, right?!

Other than this, Andrew and I are preparing for his big Birthday Party / Appreciation Dinner on the 31st! We've got lots of good food on the menu, but the best treat of all will be watching Tyler ham it up for everyone!

"Clap Pat Clap Slap"

Tyler can CLAP now, and Oh My Goodness... He's a clapping fool!

You say, "Clap" - he'll clap.

You say, "Good Job" - he'll clap.

You say, "Yay, hurray" - he'll clap.

If he sees you clap - he'll clap.

It's a ruckus around here! He's such a happy and joyous baby!

Jarrett's Echo Results . . .

Let me preface that the Heart Sonographer performed a very indepth Echo on Monday, and as I sat there holding Jarrett's hand, I couldn't help but assume she'd found something.

Well, I got the results phonecall tonite from Dr. Yu, our Pediatrician for the boys, and I am thrilled to quote... "Excellent heart condition. Perfectly healthy and normal. Great rhythms, great pressures, great anatomy."

So happy to know that he REALLY IS a healthy-hearted child! Now, if we could EVER figure out why Tyler's heart is a mystery in our family.

Jarrett

Big brother Jarrett is scheduled for an ECHO at Children's Mercy Hospital on Monday, July 21st at 10:30am. As soon as we know results I will post them. We have never suspected him of any cardiac conditions/problems, however since the birth and diagnosis of Tyler, we wanted him screened 'just so we know'...

Please keep him in your thoughts on Monday.

Cardiologist Appointment

Went to his Cardiologist visit yesterday, and they did an ECHO while we were there; plus other info.

While the overall result of his ECHO looked good, one frame showed there is a chance his aortic arch is starting to narrow again (like it had before his Cath in February). It's unknown whether this is somthing that will correct itself as he grows or if it's a rebuilding of scar tissue that'll need medical intervention to correct in the coming months (6mos or so).

Dr. Kaine wasn't concerned at this time, as all of Tyler's pulses were nice and strong. We go back for another cardiologist appointment on Oct. 15th, 2008.

During our office visit with the Cardiologist and Nurse Practicioner, they gave the 'all clear, go-ahead' for Andrew and I to schedule Tyler's circumcision. We're hoping we can get in sometime late September/beginning October.

Also, we visited with the Nutrition Clinic and discussed options and a prospective plan for what they'll do when he turns 1 year old. There was talk of our Nutritionist making a referral to the Feeding Clinic so we could begin receiving an aggressive approach to weaning from the G-tube. At this point in time, I still haven't received a phonecall from the Feeding Clinic to schedule his first appointment.

Other than all of this, weight gain is adequate for his condition - currently weighing in at 16 lbs 9 oz - and same goes for his length. He is a very proportionate boy, just on the smaller size for his age.

Woot! Woot!

Are you ready for some great news? . . .

11 mos. old and Tyler is FINALLY bearing weight on his legs! He is able to go into the standing position from the sitting position as long as you support him under his arms! I can't believe this!

To some this may sound so minor, but to us it's HUGE!

"Work those leg muscles, boy!"

Humor for the Perfectionist Parent:

A Mom's Top 10 Reasons to Run Away From Home

10. In spite of being hauled from room to room like a ball and chain, your toddler refuses to release his grip from your left ankle.
9. When your husband leaves on a business trip, you don't send him off with "I love you," but with, "Save yourself!"
8. The dog just chased the cat up and over the couch, toppling the eight piles of clean laundry you had just folded and were putting away.
7. Telling your family, "But I just fed you yesterday!" will not make them stop demanding breakfast.
6. After accepting a package from the cute new UPS guy, you realize a Cheerio is stuck to your chin.
5. Coming to you for comfort in the night, your sick preschooler pukes in your bed.
4. Your preteen daughter begins criticizing your makeup.
3. Opening the door to your car, you smell sour milk from a spill and wonder where it is; sitting down, you find out.
2. The kids ravaged your secret stash of chocolate.
And the #1 reason to run away from home is...
1. The only romantic thrill in your daily life is watching "Mr. Rodgers" take off his sport coat. ("Yeah, baby!")

A Mom's Top 10 Reasons NOT to Run Away From Home

10. The only piece of luggage with a working zipper is your preschooler's "Goin' to grandma's" mini-suitcase.
9. The last bit of cash from your purse was spent on Happy Meals at McDonalds.
8. You are only able to run if you are also pushing a grocery cart and toting a baby on one hip.
7. You promised your husband you'd take him with you, but he's still not home from work yet.
6. Your favorite pair of jeans that make your hips look quasi-normal are still in the dryer.
5. You suddenly recall scenes from scary movies about women who travel alone.
4. Your teenager just took the only car in the driveway with gas in the tank.
3. You just remembered you have a mandatory meeting at work tomorrow.
2. The dog wouldn't understand.
And the #1 reason not to run away from home is...
1. It will still be there when you get back.

(Excerpt from Balanced Living for Perfectionists, author Debi Stack)

Happy 4th of July!

We always go to Fort Leavenworth for their annual 4th of July celebration at Merritt Lake. The weather is supposed to be absolutely beautiful... and I can't be more excited to watch Tyler experience his first fireworks show!

Hope you and your loved ones have an awesome holiday!

Sitting!

Tyler can totally sit up unattended all by himself! He's been so close for awhile, and he's really doing it now!

He's also starting to spend more and more time on his tummy and can handle (happily) 5-7 minutes of it. We've also been working on trying to get him to bear weight on his legs, because he has this strange adversion to want to stand up. I don't like knowing that my 10 month old still isn't able to freely move around on his own, but everyone who's evaluated him says it's completely normal for us to notice setbacks of gross motor development in Tyler's case. All we can do is work with him, and one day I suppose it will all click and he'll have enough strength and will power to want to conquer it all. I mean, he's just now sitting up (something that a healthy 4 month old can do) so maybe in another six months (when he's 16-17 months old) we'll be seeing him crawl and/or walk.

Parents As Teachers came today. We had a fun time and Bobbi loved what she saw! She is impressed with how well he's acting, communicating, and moving in only three weeks since surgery. Our next appointment with her is July 18th.

Cardiologist appt. was today . . .

I took Tyler to CMH Cardiac Clinic at 1:30pm today for his first post-op visit with Dr. Kaine since the Glenn, and thankfully there is nothing major to report! We had an ECG done, but not an ECHO. I believe they are going to wait until his July appointment to do that.

I really had no particular compaints or concerns for the doctor today. Tyler's sweatiness has decreased a great deal when sleeping or eating and his activity level is good. He's not fussy and I really think he's over the hump of being too awful sore. He was cheerful and happy during the appointment and even caught a short nap while we waited to be seen!

His current medications include Digoxin 0.6 mL b.i.d., Captopril 5 mL three times/day, Aspirin 20 mg daily, Lasix 0.7 mL one time/day, and Zantac 3.3 mL two times/day.

Today he weighed 7.126 kg (15 lbs 12 oz). His pulse was 111, respirations 24, oxygen saturation was 80, and blood pressure 107/63. He is relatively pink and well perfused and his lungs were clear. Femoral and peripheral pulses were all easily felt! His incision as a whole is healing well. The part of the incision that was infected with pseudomonas has a little bit of delayed healing compared to the rest, but is still healing very well. So in a nutshell, Tyler basically had a great appointment, and Dr. Kaine is pleased with Ty's Glenn result.

Heart Walk

A special thank you goes out to the following people for joining Tyler yesterday as they participated with us in his VERY FIRST Greater KC AHA Heart Walk! We couldn't have asked for a better turn-out in support of our HLHS kiddo. It was so much fun and we're already looking forward to next year! (Oh, by the way, we are totally doing the 4 mile trail in 2009...)

Allison
Katy Crookham
Cari Kelly
Rebecca Kelly
Chad Esslinger
Kelly Breuer-Esslinger
Ron Esslinger
Jenny Kelly
Brenn Kelly
Jill Breuer
Kathleen Gibson
Debbie Breuer
Chambre Riegel
Bob Williams
Julie Williams
Jamie Urton
Zach Urton
Sharon Nowak
Steve Nowak
Brandy Russell
Christina Smith
Ginny Reischman
Sarah Breuer
Mary Nutter
Big brother Jarrett
Mommy & Daddy

To everyone who made a donation on Tyler's AHA website or contributed by cash/check for this year's American Heart Association Heart Walk fundraiser, we'd like to thank you again! We were able to raise a total of $2,690 and it couldn't have been possible without you!

Bottle news!

I've been reluctant to even post this in fear it would jinx him, but... Since Tuesday evening, Tyler has been attempting to drink from a bottle! This is something he chose to do ON HIS OWN. Long story short, he was showing very strong signs that he wanted a bottle so I made him a 2 ounce one... and before I knew it, it was down to 1.5 ounces. No leaks on his clothes, nothing... so it had to have went in his mouth and down his throat, right?! Now, there's no actual sucking going on, BUT he's putting it in his mouth and closing his mouth around the nipple, kind of a biting motion - whatever he's doing is still allowing him to pull out liquid. Never before could he handle anything coming out of it... he'd freak, and gag, oh he was a mess! But not now. Yay! This is a HUGE milestone people!

He weighs 15 1/2 pounds now, all NORMAL weight, NOT water retention weight any more that he's carried from surgery. So basically, he's gained a half of a pound in a month, going by his pre-op weight on April 28th. In another perspective, we were discharged on 5-5-08 and he weighed a little over 16 pounds, so during the whole surgery recovery period we've lost all that - getting back down to a tad below pre-op weight - and now he's gaining it back nicely. I have no idea how long he is.... however, I am pretty sure pre-op height was 27 inches or close to it.

Heart Walk tomorrow! Woot! I'll be ready for a nap at Noon!

Almost a week later -

And Tyler is still improving each and every day. He is starting to fight sleep during the day, just like any typical 9 monther, because he's wanting to stay awake as to not miss the action. Good thing he still sleeps like a champ at night! He laughs so hard anytime Jarrett pays him attention and he loves being sat in his walker even though the whole 'walking' thing is a concept he hasn't learned yet. Instead, big brother pushes him around the house! Tyler is also starting to practice eating again since the Glenn and getting his 'all clear' from the xray last week. He seems to be taking hold of the idea and eating somewhat better than he did before surgery; but it could also just be Mommy being extra hopeful. Either way, it'll be a long road, since at this point eating and swallowing properly will have to be a taught and learned thing. I know it's going to take time and I have to remain optimistic and keep up the repetition.

This Saturday, Andrew and I, along with a few family and friends, will be walking in the Greater KC Heart Walk! I can't believe the end of May is already here... as it seems just like yesterday we were nose-deep in the Donation Drive. We're so excited! If we get a few pictures, I'll post them after the event.

Chest xray results . . .

The chest xray couldn't have been any better! It showed his chest cavity and side walls being completely clear! No sign of lymphatic leakage. I think the kid is finally on the road to a healthy recovery. As long as no other signs or symptoms show up in the next week, he should be good to go. We can resume a lifestyle that allows us to take him OUT IN PUBLIC - AS A FAMILY on the 29th! I can't believe I am actually able to say that after 9 months!

His infection on the incision site seems to be looking better and better each day.

Thank you for keeping him in your thoughts and prayers.

Big day ahead . . .

So, today was Ty's last dose of Cipro for the Pseudomonas infection and the first day back on his previous formula, Enfamil w/ Lipil. The big day will be on Wednesday, when we'll go to Children's Mercy to have a chest xray. The Radiologist, Tyler's Heart Surgeon and a CV Surgery Nurse will be reviewing it's results to decide if he is 'healed' from the Chylothorax. We're praying with all our heart that being back on the Enfamil doesn't cause him any problems over the next two days. Only time will tell.

Pseudomonas

So his infection is called: pseudomonas. It's a hospital germ. Ummm, I have to say I'm very upset (for lack of better words) about it actually. Lisa Laddish, CV surgery, said it's caused by a nurse using a contaminated glove while changing an incision (or) blake drain dressing or better yet... an infected suture(s) that they used to sew up the incision layers inside of him after open-heart surgery.

Pretty much, the infection and situation could have went from bad to worse, in a matter of hours, if we hadn't caught it as quick as we did.

The downside is that the antibiotic cost us $98.27, after insurance, for something the hospital caused. He'll stay on the Cipro (antibiotic - super strong stuff by the way) for 10 days, 2x day.

Incision site infection and other info . . .

Went in to CMH yesterday for a chest xray (which looked good) and also to have his staples removed. The night before, I noticed the skin on and around his bottom five staples turn from a light pink to a bright red. So close to coming in to have them removed, it wasn't worth calling in there at 9pm... Anyways, Tyler and I get there and CV Surgery nurse, Lisa Laddish, asked how things were going and I told her everything is great but his bottom five staples. I told her I did the betadine wipes 2x day and that it just suddenly appeared. After she pulled those staples a little bit of a white-yellowish creamy ooze came out. So she applied light pressure and just a little bit more came out. I asked her if we could swab it and send it to the lab (me being worried it could be staph or the like) Lab will take 72 hours for the culture to grow and be identified, which would put us at early Monday morning to find out the seriousness of this. Lisa thinks it could just be Tyler's skin fighting irriation from the internal sutures. Because of that, she didn't want to apply any steri-strips to the bottom inch of his incision, just 'in case' the infection wants to surface causing his incision to open up. If that happens I have to call immediately and take him in. She put him on an antibiotic and also a prescription topical cream. I hope the antibiotic works its magic fast!

Other than this ordeal, Tyler is doing great!

After his appointments, I went upstairs to 4 Sutherland (the Heart Floor) to visit Suzie and little Garrett Jones. Garrett was born a week before Tyler with the exact same heart defect. They live in Olathe. We met eachother during the boys' Norwoods and became an instant support system for eachother, and from that our friendship bloomed. She has two older daughters, 7 & 5. Garrett is doing so good! Flying thru this surgery in fact. His Glenn was on Monday and he'll possibly be coming home this afternoon... so 4 days post-op!

On a sadder note, it is with great love that I express deepest sympathy to Amy & Nate Boeckman and big brother Kaden. On May 7th, their 3 1/2 month old daughter, Ava, passed away at CMH. Ava was also diagnosed with HLHS and was status post Norwood, but was yet to come home due to some trouble of getting off the ventilator. Earlier this week however, she was successfully extubated, and things were finally looking up for her! But on Wednesday, things took a turn for the worst. I met Amy and Nate thru her sister-in-law, who somehow came across Tyler's blog. Once again, there was an instant connection because there we were, both parents of a child diagnosed with HLHS. There is nothing better than being able to talk to another 'heart parent'... especially of the same CHD. Last week when we were in PICU for Tyler's Glenn, I was blessed to be able to meet Ava in person while talking to and learning more about Amy. Come to find out, she and I have more in common than just HLHS kiddos. Let me just put it this way... it's a small world. Kaden and Ava couldn't ask for a better mother! She is such a wonderful person. I wish you and your family peace as you make it thru this difficult time. (((HUGE HUGS, MY FRIEND, HUGE HUGS)))

First full day home

Well it started out as a pretty cruddy day.

Last night, Tyler was constantly fussy and barely slept at all, which is totally unlike him.

Then Jarrett woke up at 5:30am unhappy and not wanting Daddy to go to work.

Around 9am today, Tyler started getting irritated and screaming for what I thought was just 'no reason'... BUT there WAS a reason.

Come to find out, the Portagen formula recipe the discharging nurse told me to use was totally incorrect. She was having me prepare it to 30-kcal which is NOT right! Especially for an 8 month old baby.

When the doctors started him on it in the hospital it was only prepared to 20-kcal. So as he was getting the 30-kcal feedings last night and this morning, it was just too rich for his gut, causing him to get a severe upset tummy.

I finally got the situation resolved after calling the Nutrition Department at Children's Mercy Hospital today. The dietitian who helped me was appalled with the situation that resulted from the discharging nurse's lack of knowledge on Portagen and the fact that his dietitian while inpatient didn't do their own discharge.

However, since about 4pm this afternoon, he's been back to his happy self again. In my opinion, a mistake like that shouldn't have been made.

OMG! We're HOME!

I absolutely cannot believe this! 6 days post-op!

And the best part is the hospital provided enough Portagen formula to get him fed for the amount of time we'll need to be on it due to the chylothorax.

We go back on Thursday to get his staples out... other than that he had a good result on chest xray this morning and he also had an echo which showed the new physiology of his heart working just fine!

I captured these pics right after we got home before we took a nap-
I don't think either of them could have been any happier!

Update for Sunday, May 4th. . .

All numbers from Tyler's blood draw from yesterday came back in the 'normal' range! WOOT! He's been getting a daily chest xray each morning and they seem to be improving... another WOOT! The Chylothorax is completely under control now (not gone, just under control) after a day and a half of being on the Portagen... so CV surgery nurse, Lisa Laddish, pulled his Blake drain today! Last WOOT! The drainage coming from his chest had slowed enough and cleared enough that she said it was time.

He isn't in as much pain since it was removed and he's been so happy again today. What a trooper! No word yet on when we'll be able to come home, I think it's just a matter of time now to monitor daily chest xrays and find enough Portagen formula to send us home with until we can make the $$$ purchase ourselves.

Thanks for all the support! It's been a blessing to know he has a bunch of people praying and has really given me reason to smile when he has those 'bad days'...

Picture overload!

Ok, so I took a bunch of pictures of him today... aside from the Chylothorax, he felt great today! (And it showed!) Enjoy!

Hangin' out!

Tyler continues to do well pulling the extra fluid off of his body. He is looking more and more like his old self again. CV surgery nurse came by yesterday to remove his dressing over his chest staples and he was taken off of all monitors this morning. The transport team came for a blood draw this morning to check electrolytes... since he's a hard stick, the lady from lab didn't want to try. And as far as the Chylothorax goes, it seems like his body is adjusting to the Portagen formula! The drainage from his Blake isn't as cloudy as yesterday. Andrew and I listened in on Cardiac Rounds this morning, and it was explained to us that as long as the drainage continues to clear up and then eventually stop all together, the Blake drain will be pulled. However, we'll continue Portagen for 3-8 weeks to give the injured portion of his lymphatic system time to heal.

After that time, we'll be given the 'go-ahead' to restart his Enfamil w/ Lipil formula knowing he'll have a chest xray after about three days to see if it's collecting in his chest cavity again. If the xray comes back clean, then we know the lymphatic system is healed... but if the xray shows fluid, then we know we have to get it out and start Portagen again. So we'll see how this all pans out. I just know that my lil' guy will get thru this!

Other than all of that, he's still a great sleeper at night and loves his silky blankie. Good thing we brought it. He's feeling really good today it seems; playing with the few toys we brought, starting to laugh again, and move his arms upwards as if to say "Pick me up!" We've been given the ok to start holding him again to get him moving so nothing settles in his lungs or chest cavity.

I'll post a few pictures later on tonite as I'm going to get him dressed for the first time since surgery. What a fun day! I hope it continues to be such a positive day for all of us!

A Prayer for Healing and Hope

Almighty God, we give You thanks,

for You are the Creator

of all life and goodness.

We praise You for the world

You have made for us

to build up and enjoy.

Loving God, help us to be

faithful heralds of Healing and Hope.

Grant us the awareness of the healing

needs of those around us

and the compassion to respond

willingly to those needs.

We ask this through Christ,

our Healer and Source of all Hope.

Amen

Not a good day . . .

We were moved up to the Heart Floor yesterday late afternoon, because Tyler actually peed a few times; and for the most part, his recovery thus far had been rather uneventful. Unfortunately, Tyler has made me a bit of a skeptic when it comes to doctors and nurses try to comforting me with odds… Because if it’s a complication that can happen during the recovery process, Tyler will want to play with it!

After yesterday, a day spent of gradually introducing his feedings again, this morning Tyler’s nurse noticed a cloudy substance draining thru his Blakes. It is being coined by his surgeon and attending CV surgery nurses as Chylothorax. This is a risk of open heart surgery, but whether or not it occurred during the actual surgery process or not is unknown. One guess could be that it is the result of trying to get a central line in and they must have pierced a lymphatic vessel. The second guess could be that during surgery, part of his nearby lymphatic pockets were ‘nicked’ causing fat from Tyler’s formula to drip/seep into his chest cavity.

Chylothorax is a condition that results from lymphatic fluid (Chyle) accumulating in the pleural cavity. Its cause is usually leakage from the thoracic duct or one of the main lymphatic vessels that drain to it. Simply what’s happening is this: Chyle, a form of fat found in your diet (in his formula), is draining from the Blake drains in his chest (which means it’s starting to surround his lungs) and it’s causing him to experience a diminished lung capacity, making it harder to breath and keep his oxygen saturation above 70.

From what we’ve been told and what information we’ve read so far, is that it could take anywhere from 1 week to 12 weeks to fully heal from this and that it can be hard to manage.

To correct Chylothorax, he has been placed on a formula called Portagen. The fats found in Portagen have already been broken down, making it next to impossible for the fat to continue seeping thru. It is unknown how soon or how long it will take Tyler to recover from this condition, but should recover nonetheless – eventually. Hopefully the vessel that is injured will repair itself quickly and we can resume his regular formula again.

I am unsure of the exact amount of liquid surrounding his lungs right now that’s just waiting to come out, but we’ll know if the Chylothorax is getting worse if his weight jumps significantly overnight and/or if his respirations continue to rise.

Please, please I beg of you all, to keep my baby boy in your prayers to make this condition go away. Personally, I’d much rather be back to just praying for pee. It’s been a very stressful day… God only knew this day was coming.

Pray For PEE!

The only thing holding Tyler back from moving to the floor, is his lack of urination. He's still very swollen and puffy, and needs to pass the excess fluids, but the Doctors aren't too concerned yet - they just think it's going to take a little more time and are trying to think of ways to help pull the liquid from his body. Right now, Tyler is only urinating about once every 12 hours. They're hopeful that will increase as the day moves on.

His blood pressure is still looking really good and they've now started feeding him!



Trish

Pictures of Tyler yesterday:

A new day . . .

The sun has arisen on yet another day, and he's still hanging in there.

Blood pressure seems to be almost in control at this point, so during rounds this morning the doctors have requested the nursing staff to start weaning him from his drips.

In the 13+ hours since being extubated, Tyler seems to be experiencing a little more pain that is causing him to take shorter (and not as deep) breaths... like he's afraid to. However, his blood gases continue to come back just fine. As a result of the increased pain alongside his massive headaches (due to adjusting to the new bloodflow), they have ordered a new med (toradol) to help take the edge off and allow him to relax. He is also experiencing major itching issues as he comes down from the Nitro and Morphine... also something to be totally expected.

He is very swollen today because his puffiness increased over the night. His day shift nurse, Michelle, is taking measures to correct it with hopes that he'll start to pee some of it off. Basically what's happening is he's taking in more than he's letting off. Also, his throat is swollen and dry from the ventilator, which isn't allowing a lot of what he's trying to cough up to come out, causing him to have a little bit of stridor at this point. However, his lungs are nice and clear at this point, so the doctors told us not to be concerned yet.

We were told by his Surgeon, Dr. Lofland, and CV Surgery nurse, S. Reynolds, that today and tomorrow will be two of his worst days during the recovery process. We were also told that we shouldn't expect to head to the floor today (but maybe by tomorrow evening)... It all depends on the length of time it takes for the nursing staff to adequately wean him from the drips, become stable on his own accord, and begin his feedings again.

Andrew and I have talked about the possibility of having one of our favorite OT's, that worked with Tyler during his stay here in Aug/Sept '07, come up for a visit to discuss the possibility of working again with a bottle... since there isn't an issue anymore with paralyzed vocal cords or aspirating. I don't know, but we'll see. It would sure be nice to have him take liquids by mouth (like formula in a bottle) to help heal his throat after being intubated.

I will post again later in the day on how he progresses. Please continue to keep him in your prayers. I am a little down today, just because we're facing the reality of post-surgery now. This really is the worst part. But as always, a safe recovery takes time.

Update number four . . .

Tyler's current condition:

he has been extubated;
breathing at a good pace (not rapid);
not retracting;
he's becoming more alert;
due to high blood pressure, keep him on a low flow of oxygen with the nasal canula;
did spike a fever caused by a systemic response, but has gone down now.

Kathleen and Andrew are going to get some rest for a while and then go back to the hospital to be with Tyler, so watch for more updates!

God Bless Baby Tyler and his Family!

Trish

Update number three . . .

Hi everybody! It's Kathleen!

My little fighter is something else! What a strong baby. Seriously, I can't stress that enough!

So far so good with the way things are looking for him. He is fighting very high blood pressure (supposedly even since the end of surgery) But the doctors and nurses are attempting to get it under control, it just might take a while for it to level off. Other than that, he's doing good.

They're slowing weaning from the ventilator with doctors hoping he'll be extubated this evening or no later than tomorrow morning.

If things continue to progress in the positive direction, there is talk of MAYBE being home by this weekend or early next week. WHOA! I can't begin to fathom that.

I will be taking pictures this time... (something I didn't do after his Norwood) So weary eyes be forewarned. I want to post them because this blog is not only for all of you to read, but it also acts as a journal for Andrew and I as we make this journey with Tyler.

Thank you for your thoughts and prayers today! Love you all.

Update number two . . .

Tyler's surgery is FINISHED! The surgeon, Dr. Lofland, said that things went very, very well - like clockwork! He also said the surgery was performed perfectly, and with nothing else needing to be repaired or worked on. Tyler should be set up in the PICU for recovery in 30-45 minutes!

The updates will continue. Keep praying!

Trish

Update Number 1 . . .

An hour ago, the family was informed that Tyler went to sleep absolutely fine and did quite well with that first step. The Surgeon had no problem getting in and said scar tissue on both the sternum and heart is very minimal, and he was quite happy with that. The actual Glenn procedure is now being performed and the next update should be in about two hours, so stay tuned!

Trish

Surgery Day!

We're headed to the hospital...... stay tuned for updates throughout the day.

I think this is appropriate! :)

A Patient's Prayer

Good and loving God, during my stay in

The Children's Mercy Hospital,

I place myself in Your hands.
The experience of Your presence calms me.
All healing comes from you. Please heal me!
Give me wholeness through the skills

You have given my doctors, nurses, technicians

and everyone dedicated to me and to my care.

The medicine and technology

that aid in my healing are Your gifts to me.

I know all good things come from You.

Thank You for the many blessings

You have given me so far

and for the persons whom I love. Amen

Countdown: 1 day (t-minus 15 hours)

Pre-op appointment went as good as good can get! Meetings with nurses, our surgeon, anethesiologists, vitals, health screening, ekg, blood draws, chest xray.... Whew! It was a busy day. But we have clearance for surgery tomorrow morning! He's first case.

We are to arrive at 7am, surgery should start about 8/8:30am. There will be a Cardiovascular Surgery Nurse who will come out and give us an hourly update. After each hourly update, I hope to be able to relay the information in a timely fashion so a post can be made regarding his progress.

Just wanted to thank you all again for hanging tight with us as Tyler undergoes another open-heart surgery.

New pictures!

What it means...

What does it mean to be the parent of a child with a heart defect?

-It means going into your baby's room a dozen times a night just to check and see if he is breathing;

-It means standing over the crib and watching for the chest to rise and fall and when you don't see it move, you begin to panic and put your head down close to the baby's face to try to hear him breathe;

-It means that when you don't see the chest more and you don't hear the breathing (because your own heart's beating is drowing out any other sound in the room) you put your finger under the baby's nose to feel the warm air on your finger... until you wake the baby and he stirs. You're thankful, so thankful that he's still with you.

What does it mean to be the parent of a child with a heart defect?

-It means waking up with a start every morning, jumping out of bed and running to your baby's room wondering why he isn't up crying yet;

-It means feeling a huge sense of relief when he hears you and opens his eyes and smiles;

-It means saying a prayer of thanks for another day.

What does it mean to be the parent of a child with a heart defect?

-It means measuring out his medication and panicking if he spits some of it out;

-How much did he spit out anyway? 1cc? 2 or 3cc's?

-And wondering if you should guesstimate how much more he should have and worrying about over medicating.

What does it mean to be the parent of a child with a heart defect?

-It means checking his nailbeds against your own to determine how blue he is today;

-It means asking your husband, your mother, your sister, "Do his lips look blue to you?"

-It means snuggling him in an extra blanket for fear he won't be warm enough.

What does it mean to be the parent of a child with a heart defect?

-It means worrying that even a sniffle could cause an infection that would harm his heart;

-It means taking your baby to the doctor and then worrying that the baby will get something even worse from being in the waiting room so...

-It means walking back and forth, and back and forth in the corridor until the nurse calls your baby's name and takes you straight back to the examination room.

What does it mean to be the parent of a child with a heart defect?

-It means knowing that everyday is a blessing and a gift;

-It means knowing that you are the luckiest person in the world 'just to be a parent';

-It means cherishing every moment, every breath, with such an intensity that you feel tears come to your eyes for no apparent reason.

What does it mean to be the parent of a child with a heart defect?

-It means praying for a miracle to save your baby's life;

-It means praying your marriage is strong enough to endure the hospitalizations, separations, the grief;

-It means praying for the will to live even if your baby doesn't.

What does it mean to be the parent of a child with a heart defect?

-It means your own heart knows a pain no parent should ever know;

-It means feeling weak and helpless and angry and depressed because your child's fate is out of your hands;

-It means feeling strong and determined and brave because you know you have to be.

What does it mean to be a parent of a child with a heart defect?

-It means you love knows new unlimited boundaries;

-It means your pride in your child's accomplishments is unparalleled;

-It means your pain has taught you a deeper sense of compassion and understanding than you ever imagined.

So what does all of this mean?

-It means we are all united by the same feelings;

-It means that we all know the mixed up emotions of living with Death - but more importantly of living with Life;

-It means that even though we are strangers, we are more to each other than friends could ever be.

(Anna Jaworski)

Countdown: 3 days

He woke from his afternoon nap yesterday around 3:45 pm, and was very blue again. The Pulse Ox gave readings of 67-70, so I started him on oxygen for about 12 minutes and was able to stablized him at 73. Good news is, the rest of the evening he did well. He slept with the Pulse Ox on for three hours during the night and readings were 76-ish. His oxygen level is all over the place, but he's super active and growing - so we're told it's to be expected this late in the game. They want us to use the oxygen during these necessary times to preserve his brain cells as best as we can.

I heard Jarrett was quite the 'three year old' during the Ringbearer/Flowergirl procession last night. Good thing I wasn't there, I'd probably have been very embarrassed. If anyone has any pictures I'd love to see them and possibly post a few of them here.

We'd like to take a moment now to thank all the people who have completely understood the importance of keeping BOTH of our kids healthy and well in the months, weeks and days leading up to this surgery. The precautions we are forced to take aren't our bright and wise ideas; it's those ultimately set by his health care team at Children's Mercy Hospital. As much as we'd like to be able to go to family functions 'as a family' or go on especially fun outings and vacations 'as a family' we are constantly reminded of the horrible things that can happen should one of us get sick... and quite frankly, it's a risk that we aren't willing to take. Trust me, it's a daily conversation in our home.

We wish, just as much as others, that our circumstances were a tad bit different in the weeks preceding Scott & Sarah's wedding; but they weren't, so we mustn't dwell on the 'what could have beens...' Instead we must be happy about the days and years ahead of us, all the while remembering the hardships and sacrifices we've made to get Tyler as far as he is now. That is what we ultimately want everyone to know. The doctors tell us our lives will change dramatically after Ty is completely healed from this second surgery. We'll be able to finally start doing things 'more often' as a family - under much less strict guidelines set forth by his health care team. But just as any family living with a CHD child, we'll be the ones, nonetheless, still using close judgement during the 'sick season'.

Countdown: 6 days

Tyler has had major drops in his saturation this past week. Instead of staying steady at 74-ish while sleeping, he has been right at 70-71 while sleeping. He has also been very pale and dusky on his whole body that started a few days ago. We were half tempted to take him in to Mercy last night because of his saturations, but didn't because he would have had to be seen in the ER... and cardiology strictly told us to stay away from the ER unless he is showing multiple signs of heart failure - because of the increased number of illnesses there.

So we made a call to the cardiac clinic this morning describing last nights events and they told us to start putting him on the Pulse Oximeter for a 10 minute interval every three hours while he is awake. They also said if his awake saturations are 73 or lower we have to wave the oxygen in front of his face until his sats bump back up, and at night he will be wearing an oxygen nasal cannula because sats sometimes dip below 70. Surgery is just around the corner, and we pray he makes it thru the weekend since pre-op is on Monday.

And as for lil' Jarrett, even though he is healthy, he won't be able to enjoy his Uncle's rehearsal dinner (Thurs.) and wedding reception (Fri.). Because of the high possibility of catching a bug that has frequented a few children in the family, Mercy doctors advised us during this morning's phonecall, to keep Jarrett as far away as possible from situations that may expose him to bacteria that could potentially be introduced into Tyler's sterile environment at home. (especially this close to the surgery date) Our nurses and doctors have been aware of this weekend's wedding for quite a few months now and know just how important it is to us. So out of respect to the Bride and Groom, they told us that under our discretion we could still allow Jarrett to do his duties of ringbearer during the ceremony, but then he'll have to come home.

To Sarah & Scott: Please know we love you and wish that our "whole" family could join you on your blessed day. We know it will be beautiful and hope your new life together is filled with many wonderful memories!

Countdown: 9 days

Just a little over a week until the second surgery.
It'll be here before you know it!

He's doing well!

Weight gain has finally slowed down - due to his heart working so hard to keep up. He's burning some major calories with how crazy active he is now. At this time, Tyler's main source of feeding remains to be thru his g-tube. Still barely any jarred baby food taken orally...but this week we've made leaps and bounds because he isn't gagging as much as he had been when the spoon meets his lips!

His sleeping saturations have been averaging anywhere between 74-76. Honestly, he really does seem to still be doing 'fairly' well. I took him in for a well child visit to our primary pediatrician, Dr. Yu, on the 8th... Dr. Yu said his pulses were awesome and that his weight gain AND height is following a beautiful curve. He said the size of Tyler's liver felt good... he could barely feel it a tiny bit lower, but that it wasn't a size that screams heart failure. He doesn't think Tyler will have any problems making it to the 29th for surgery. So far there is no sign of sickness and his lungs were very clear. All in all, he observed no concern in Tyler.

Even though I am giving a good report, Tyler has been asked to wait too long (in my opinion) and cannot wait much longer for the bi-directional Glenn. I am going stir crazy in this house not being able to take my boys TOGETHER to the park, TOGETHER shopping, start Jarrett in preschool, spend a day at Grandma's, picking up one week and heading to Colorado, etc.... Things that I would have been doing had he not had this heart defect. However, by not doing those things, I've managed to keep him healthy thru what has been one of the worse RSV and flu seasons. Yes, it's starting to warm up and the sicky-season is fading away, but I am still constantly staying home and washing hands, sanitizing door knobs, etc... following the same daily cleaning routine as always. I guess whatever I am doing is working.

So 11 days and counting. I've literally started to get nauseous just thinking about doing this all again. Reality is setting in. It's like, as soon as I make it past one struggling milestone, there's another one waiting on my doorstep. Vent. Deep breath. Sigh.

Someone I Love

Someone I love... relies on me in ways you will never understand.
Someone I love... endures pain and challenges that break my heart.
Someone I love... is unable to advocate for themselves for things that most of us take for granted.
Someone I love... will never have the opportunities that every child should have.
Someone I love... will need unconditional love and support after I'm gone, and this frightens me to the core.
Someone I love... encounters pity, stereotyping responses and prejudices at every turn because they look, act and/or learn differently from others.
Someone I love... has needs that require me to allow outsiders to have power and input in areas that should be mine alone to meet.
Someone I love... will continue to look to me for everything in life long after other children are able to assume thier place in the world.
Someone I love... has needs that require more time and energy than I have to give.
Someone I love... has needs that have become the driving force behind major decisions my family makes.
Someone I love... has changed me in ways I will never be able to accurately describe.
Someone I love... has taught me about love and the really important things in life.

-author unknown

Good Report

The update from Wednesday's Cardiologist appt --

Tyler was given a good report! He was scheduled to also have an echo during this appointment, but since Dr. Kaine felt great pulses in Ty's lower body (as well as upper) and that his blood pressure (on his leg and on his arm) were nice numbers, he didn't think it was necessary to do one. So, now we just pray he makes it 'safely' to the end of April for surgery. Dr. Kaine thinks he should have no problem going another 30 days. I was happy to hear that!

On Sunday we are going to Lone Summit Ranch, in Lee's Summit for the annual member picnic sponsored by our support group, CHD Families Association. It will be nice to mingle outside of a meeting atmosphere. We're looking forward to it and from the sound of it, there are many activities planned.

The Latest and Greatest

Tyler is hanging in there- waiting for the next surgery. He's such a tough little fighter! Like I said in an earlier post, it's scheduled for April 29th. You can definately tell he is outgrowing his one-sided heart though. He's finally starting to look a little blue and dusky on a daily basis. Also, his oxygen saturation is trending downward which is another sign that he needs the next staged surgery soon. He is still slowly gaining weight... currently he is just shy of fifteen pounds.

He is growing up though and is so smart! He loves to play Peek-a-Boo and his new favorite game is "Mommy Pick-Up." His first tooth popped thru on March 10th; it was the bottom left! His second tooth, the bottom right, popped thru on March 16th. Last week during his Parents As Teachers monthly meeting, our Parent Educator completed his 1/2 birthday assessment. It was an "ages and stages questionnaire" that scores a baby's physical and intellectual development amongst the average. He lags in Gross Motor, but isn't considered 'behind' yet. Gross Motor covers things like crawling and standing with support. Two things he isn't doing. However, Tyler is at or exceeding in the following categories: Communication, Fine Motor, Problem Solving, and Personal-Social. We are happy to see and hear that he is following the curve!

Tyler has a cardiologist appointment on Wednesday and he will be getting an echo as well. It's the first checkup since his Cath & Angioplasty in February. We're praying for a good report. I will update soon after.

God's simple Easter reminder

Easter came upon us quickly this year. Many of us had been out buying baskets, grass, candy, and all kinds of "goodies" to surprise our kids with this morning! It is so much fun to get caught up in the bright colors and cheery decorations that Easter has to offer. But, we can't let this holiday slip away without recognizing its true meaning and passing this on to your children. It is a time of celebration of the resurrection of Jesus. The time when he overcame death and rose to live in heaven forever. And, because He has risen, we have been given the hope of eternal life. “Arise, shine, for your light has come, and the glory of the Lord rises upon you.” – Isaiah 60:1

A prayer from my family to yours:

God of light and love, thank you for your mysterious ways. As we celebrate the Easter mystery, give us new eyes so we may witness your Spirit alive and at work in our world and in our lives. Help us to find your Light in the darkest of times. My heart leaps with joy and my soul is awakened with every glimmer of your Light. Thank you for the blessings of Spring, it is a sign of new growth and rejuvenation that is to come, and continue to remind us that you are always near. Amen.

My greatest gift is that of my children. Bless them with love, mercy, justice, and health. Thank you Lord.

Happy Easter to All!

Quote of the Week

Half of a Heart

It's a beautiful day up in Heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born.

One of the sweetest angels says to Jesus, "I don't want to leave, I like it here, and I will miss you dearly." He reassures the scared little cherub by telling him that everything will be okay, and that he is just going for a visit.

He is still not swayed on this idea. So Jesus kneels down and says, "How about if you leave half of your heart here with me and take the other half with you; will that be better?" The angel smiles and says, "I guess that will work."

But the little cherub is still scared. He now asks, "Will I be okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help you and your family out, and you'll be just fine."

Then Jesus gives the angel more details about this plan. He says, "When you are born, your Mommy and Daddy will be very scared, so you must be strong, and on days when you feel weak, just remember that I have the other half of your heart. Enjoy the time spent with your family; play, laugh and smile everyday. And when it's time to come back Home, I will make your heart whole again. Always remember your heart is not broken, little one, it's just torn between two loves." -Unknown

Reflection:
I am sure this is the conversation Tyler had with Jesus while still in my womb. Not a day goes by that he's not smiling, laughing and soaking up all the love and attention he gets from his family. We've met so many wonderful families who have walked this path before us, and I can honestly say their personal experiences have touched and strengthened our lives. We now pray for all of the unknowing families who will someday find themselves on our path, and hope we can touch their lives, like others have done for us.

Big Change...

Found out yesterday:

Open-heart surgery #2, the Bi-directional Glenn, is actually on the books and scheduled even LATER than what was quoted to us in January, and MUCH MUCH later than what was told to us this past Friday regarding the recent post mentioning sometime in March.

Drum roll, please......

Pre-op: Monday, April 28th, 10am
Surgery: Tuesday, April 29th, time TBA

After a surge of additional serious RSV cases over the weekend, our surgeon, Dr. Lofland, made a big change regarding Tyler's scheduling status. During last Friday's conference he said, "Surgery is a go-ahead, get him on the books as soon as possible." However, when I got the phonecall, plans changed. He had given a hand written note to Veronica, the lady who does the scheduling, that said, "Tyler Breuer, Bi-Directional Glenn, for end of April."

I know you're thinking, "Wow! That's so far away; is he going to make it?" That was our first reaction as well. We are told he should be able to, but if for some reason his oxygen saturation level drops below 72, surgery will be moved up.

It is factual, that the ultimate reason why surgery is so far away, is that RSV in the KC Metro isn't forecasted to clear until April 20th-ish. It just came so late in the season this year. Unfortunately, CMH is treating many of these cases, and it is delaying the summer '07 babies, born HLHS post-Norwood, out much longer than they should be. Tyler isn't the only one waiting for the Glenn, his HLHS buddy Garrett who lives in Olathe (born Aug. 14, 2007) also needs surgery #2. We pray for his health to hold up and withstand the wait as well.

*********************************************************************************

Update from today:

Tyler went to Surgery Clinic this morning to have his Mickey Button changed out. Can you believe three months have past since the first one was put in? I sure can't! He did well. The nurse who changed it is taking precautionary measures to fight the possible beginnings of an infection, by putting him on a round of antibiotics... because he showed a little bit of pink near the stoma site and also for how tender it still is after three months. Even after all that, she says it is completely normal for this to appear in the early months, as his body is trying to fight off a foreign object in an organ not typically exposed to air and the environment.

Then on our way home, we stopped by our Pediatrician's office to get his February Synagis shot. (a shot that helps prevent him from getting RSV) Here's a link about Synagis: http://www.synagis.com/how-synagis-works.aspx

I will keep posting about his current health and doctor appointments. Thank you for checking in!

Quote of the Week

The Chosen Mothers

Most women become mothers by accident, some by choice and planning, a few by social pressures, and a couple by habit.

Did you ever wonder how mothers of children with a life threatening illness are chosen?

Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger...

"Beth Armstrong, son, Patron Saint Matthew"
"Marjorie Forrest, daughter, Patron Saint Cecilia"
"Carrie Rutledge, twins, Patron Saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it. I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She will have to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel.

"No worries, I can fix that. This mother is the perfect choice. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from this child occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step just ordinary. I will permit her to see clearly the things I see... ignorance, cruelty, prejudice... and allow her to rise above them."

"And what about her patron saint," asks the angel with his pen poised in mid-air.

God smiles and says..."A mirror will suffice." -Erma Bombeck

Reflection:
This message is good at relieving some of my anger at all that we are enduring living with Tyler's Congenital Heart Defect. I know that if God asked me if I wanted Tyler this way or not to have him at all... I wouldn't have hesitated, taking every chance I get to love him full-heartedly. I am so thankful that I am the 'chosen mother' able to care for him.

Unfortunately, since our life got turned upside down in August 2007, neither Andrew or I have a moment to catch our breath, much less take much time for ourselves as a couple. I guess that we should try to take just a few minutes each day and remember who we were before this nightmare began. We should also attempt to realize that someday in the not so distant future, things will slow down and we'll be able to get somewhat grounded again.

Day Four, Post Cath & Balloon

Tyler is truckin' along and is enjoying life back at home with his noisy, rambunctious older brother! His chest seems to not be as sore anymore. Well, at least he is tolerating me picking him up under his armpits again.

Pam Finn, our RN in the Cardiac Clinic, called yesterday to inform us of what was discussed during Friday's conference with Ty's surgeon, CV nurses, and panel of cardiologists. She told me that a lady named Veronica will be calling early next week to schedule Tyler for surgery #2 sometime in March. I will post again once he's on the books for the Glenn to let everyone know the date. Again, this is MUCH sooner than we have been told in the past. But it's for the best, I suppose.

So true is the saying "the best laid plans of mice and men often go awry." No matter how well you plan something, always expect the unexpected; in other words, just because you think you've done all you can for something to go right....you better always have a plan B to fall back on.

As much as I don't want him to ever go back to CMH, I know this is what has to be done in order for him to live. I don't want to see him in pain, struggle for life, or watch him lay restless in a hospital bed. God grant me the strength to remain poised and peaceful as we approach the future weeks of my son's journey.

Today's Update: Just arrived back home.

It's 5:20pm:

We arrived home tonite, with Tyler, at 5:00pm.

He is sound asleep in his swing. Boy did he miss it!

Results from his morning echo today came in fine. Enough so, that the doctors decided to begin writing discharge papers around 2:00pm. His oxygen saturation levels are significantly lower now than they were before the catherization and balloon. However, much to our surprise, that is what was to be expected, because now, more blood is able to flow to his extremities and lower body. Whereas before the balloon, his lungs were receiving more oxygenated blood due to the passageway in his aortic valve being constricted with scar tissue. Make sense?

So we're home. He has a HORRID junky cough from the ventilator, but his lungs as of right now sound clear. The ventilator just disrupts so many things in the airway and causes so much swelling that it's almost impossible for the cough not to happen. It is especially worse in Tyler's case, because he takes no liquid by mouth. If he did, water, juice, etc. would keep it moist and would encourage and support quicker healing.

Now, Andrew and I are just praying that he didn't catch any weird sickness or RSV, or croup crap during his 32+ hour stay. We are doing our best to keep him well so we can go ahead with the second open heart sometime in the next 4/5 weeks.

Day two, following Cath procedure.

It's almost noon on Feb. 20th, 2008.

Tyler was moved up to 4S close to 11pm last night. He has remained rather stable overnight, however, there has been no talk of a possible discharge today...

Since moving to 4S, he's tolerated full feedings again. He also went in around 10:30am today for an echo - checking heart function and yesterday's balloon procedure. We haven't received it's results yet.

I will update again as new information is provided.

Love you all!
Kathleen

Cath & Balloon Update

It's 4:30pm on Feb. 19th, 2008...

I'm sure everyone is happy to finally be reading something!

Here it goes:

Off to an interesting start... Andrew and I arrived at CMH today at 8:30am to be admitted for his procedure at 10am, and were told around 9:30am that the Cath lab computers were down. So the nurses prepared us by saying today's procedure might be canceled. However, at the time, there were computer technicians working on them trying to get them fixed. It was during Tyler's interview with the anesthesiologist around 10:15am when our Cath nurse informed us the computers were up and running. After our visit and consent with Dr. Kaine, the cardiologist on staff today in the Cath Lab, Tyler was off to prep for the heart cath and balloon around 11am. The Cath nurse informed us she would be out in about an hour to give us an update regarding his progress.

So... she came out... AND we received VERY disheartening news. During induction of the anesthesia meds, Tyler coded twice. (although his heart rate never completely stopped, the doctors and nurses followed exact protocol for a real code blue. It is documented in his chart as a 'Mini-Code Blue') After the dose of fentanyl, his heart rate dropped from the 120's to somewhere in the low 50's. Dr. Kaine did chest compressions and they gave him a dose of epinephrine. About one minute later, his heart rate dropped again to the low 60's. So... another round of chest compressions and another dose of epinephrine. This time, Tyler stabilized with his heart rate remaining around 110. Apparently the reason he 'mini-coded' was because his ionized calcium was very low. Anyhow, Dr. Kaine felt confident enough to continue with the Cath - and if cath portion went well, they were going to go forward with the balloon. It ended up that the cath part went fine and he was successful with the balloon. Dr. Kaine was apparently happy with it's results.

Tyler's case will be presented to the board of cardiologists, cardiac surgeons and CV nurses this Friday. We are supposed to receive a phonecall late Friday or sometime early next week to discuss getting on the calendar for his next open heart surgery, the Glenn.

Because Tyler coded in the Cath lab, we were unable to recover in a room on 4 Sutherland. Instead, we are spending a night or two in the PICU so he can be monitored very closely. We are attemping to start feedings again thru the g-tube. So far, he didn't handle the first feeding very well.

Thank you for thinking of him today. Andrew and I were wishing for a quick stay, hopefully Tyler can show them he's strong enough to go home sometime tomorrow, like what was originally planned. But, right now, his health and heart is in God's hands. All we can do is pray.

Update from today's Cardiologist Appointment

Tyler had an echo today. The nurses finally got a very good picture of his aortic arch. It was made known to us that it is extremely narrowed due to built up scar tissue from the Norwood surgery and that he will need his Heart Catherization procedure MUCH sooner than we expected. To the tune of it being scheduled for the morning of this upcoming Tuesday, Feb. 19th. During the Heart Cath, they will also be ballooning the aortic arch to open it back up. We will be spending the night at CMH regardless of how well he does during the procedure. After he has the Cath and Balloon, we were told that he will be able to make it another 4-6 weeks before we go for the Glenn surgery...which still puts us at the end of March, very beginning of April. If you are reading this, please keep us in your thoughts and prayers on Tuesday that everything is smooth and uneventful.

Tyler's First Haircut!

Mommy gave him a haircut tonight on Valentine's 2008.
What a little dolly!

His sister...

Oh, c'mon! Didn't you know we had a girl too?

2008 Heart Walk!

On May 31st, Andrew and I will be walking in honor of our son, Tyler, at this year's Greater KC Heart Walk, teamed with others from our Congenital Heart Defects Families support group.

Everyone knows someone affected by a congenital heart defect, heart disease or stroke. For those we love, we felt it was our calling to involve ourselves in this cause. We have set a personal goal to raise funds for the American Heart Association and need your help to reach it. We are raising critical dollars for heart disease and stroke research and education.

You can help us reach our goal by making a donation online. Just click on the white Heart Walk logo found on the right hand side of this webpage and you will be taken directly to our personal donation page. Once there, you can make a secure online credit card donation.

The American Heart Association's online fundraising website has a minimum donation amount of $25.00. If you prefer to donate less or by check, you can do so by sending a check directly to us made payable to the American Heart Association. Don't hesitate to ask us questions, we'd be happy to answer them.

All donations are completely tax deductible and you will receive a donation receipt immediately after making your online donation.

Additionally, if you have friends, family or co-workers who you think would kindly make a donation towards this cause, please feel free to forward Tyler's donation page to them. We appreciate your thoughtfulness!

Your donation will help fight our nation’s No. 1 and No. 3 killers—heart disease and stroke. You are making a difference.

Thank you SO much!

Pictures from December

Photos by: TrishWills Photography

Cardiac Appointment NEWS

Andrew and I accompanied Tyler to his January 16th cardiac appointment. We learned much news regarding his upcoming Heart Catherization procedure and next Open-Heart surgery.

Tyler had an echocardiogram during this appointment, and what they saw showed his heart to still be in good functioning order, but with new signs of over-stress. It is nothing to get too worked up about... we just know that he can't live on the first surgery for much longer. Remember, the right side of his heart is what is pumping to his entire body and lungs. It is working 2x's as hard. After the next surgery, the Glenn, it will only be working 1.5x's as hard. (and after the third surgery it will be working at the 1x capacity)

We've been told a few dates, and unfortunately, time isn't going to be slowing down for Mommy and Daddy's sake!

• The next cardiologist appointment is February 14th. He will have another echocardiogram and we will also be scheduling his Heart Catherization.
• The Heart Cath will take place towards the end of March. If Tyler has a morning catherization, he will be discharged later that evening; if he has an afternoon catherization, he will be kept overnight and discharged early the next day. Children's Mercy Hospital monitors the hypoplast babies for roughly 6-8 hours after a cath procedure.
• Then, his second Open-Heart surgery will take place BEFORE April 10th. If all goes well, the outlook for length-of-stay is about 10-15 days. He will nearly be 8 months old and usually these HLHS kiddos have the second surgery when they are in their 6th month. However, that is not possible for Tyler, because his 6th month falls smack dab in the center of RSV season. His Pediatric Cardiac Surgeon will NOT operate on him during this time unless serious medical intervention is needed.

So, that is our most updated news regarding the condition and status of baby Tyler's heart. Andrew and I are trying hard to process all the information we were given and what to expect. Why can't this be easier to wrap our minds around? It's just surreal to think we're going to be doing this all again in a mere 10-12 weeks. Afterall, it seems as though we just brought him home.

Quote of the Week

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who haven't, share in my unique experience and try to understand it. To imagine how it would feel. Well, it's like this...

When you are going to have a baby, it's like planning a fabulous vacation trip to Italy. You go out and buy a bunch of guidebooks and make your wonderful plans... making sure to site see the Coliseum, Michelangelo's David, the Gondolas in Venice. You may even attempt to learn some handy phrases in Italian. It's ALL very exciting!

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says joyfully, "Welcome to Holland."

"Holland???", you say with a disgusted tone. "What do you mean, HOLLAND? I signed up for Italy! I'm supposed to be in Italy. All my life, I've dreamed of going to Italy!"

However, there has been an unexpected change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a WHOLE new set of guidebooks. And you must start learning a WHOLE new language. And you will meet a WHOLE new group of people you would have never met.

Holland is just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while you start to catch your breath, you start to look around you, and you begin to notice that Holland has historic windmills, and Holland has beautiful tulips, and Holland has Rembrandt's.

But, everyone is busy coming and going from Italy, and they're ALL bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes. That's where I was SUPPOSED to go. That's what I had planned."

This pain will NEVER, ever, EVER go away, because the loss of that dream is a very significant loss.

But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. -Emily Pearl Kingsley

Reflection:
Though you may not personally relate to the subject of this particular composition, we can all relate to having things in our lives not turn out just the way we hope or expect them. However, I do believe its message is equally relevant to us all. More times than not, the path we utimately wind up on, ends up being the absolute best fit for us; perhaps it's a path we end up 'living with' or deciding to molding our life to, either way-- it's likely a path we never regret taking.

Quote of the Week

"A new year is unfolding—like a blossom with petals curled tightly concealing the beauty within.

Let this year be filled with the things that are truly good—with the comfort of warmth in our relationships, with the strength to help those who need our help, and the humility and openness to accept help from others.

As we make our resolutions for the year ahead, let us go forward with great hope that all things can be possible." -Unknown


Reflection:
Happy New Year! I hope you are blessed with many friends and supportive family in 2008! Because without them, we are nothing.

Quote of the Week

The Chosen Ones

I had a dream the other night.
It came to me so clear.
I stood before the throne of God,
afraid to come too near.
God said to me, "I hear your prayers.
There are answers you can't find.
I brought you here to talk to me
and help to ease your mind."
I said,"Well, yes, God, I am upset...
About my special one.
This punishment is awfully harsh...
Whatever have I done?"
God looked at me and shook his head
He said, "My Dear, you've got it wrong.
I sent this special child to you
because you are so strong.
I searched and searched to try and find
someone with a love so rare.
Parents so unselfish they could
give him that special care.
I try to save my special gifts,
like those you're speaking of,
for a special kind of parents
I call the 'Chosen Ones.'
Of all the ones to choose from,
I know I've got it done...
Parents who deserve my best,
an honor you have won." -Unknown

Reflection:
Sometimes it's the words of a poem that help you see He's been in charge, in control, and calling the shots all along. He knows what He's doing and already knows our life's plan; but to us it's just a mystery. Every day, we are given a piece of the puzzle. It is from this that I've found myself in His grand scheme of things-"Every day is a gift from God, that's why we call it the present!" God won't give a person more than they can handle. Andrew and I are His 'Chosen Ones' to be that special parent, whom no one else can be, to our Tyler.

PS...This was one of the few poems I found myself reading (far too many times) while Tyler was enduring his first five weeks at CMH. It got me through those long days and endless nights.

Quote of the Week

"In the long run we shape our lives and we shape ourselves. This process never ends and the choices we make are ultimately our responsibilities." -Eleanor Roosevelt

Reflection:
I have followed the path more travelled most of my life. But lately I find myself throwing away my compass and my map. The events of my life over the past year (more or less) have caused me to completely reexamine, and reimagine my life – who I am, what I value, who I want in my life, and what I want to do. And although I've recently encountered the path less traveled, it's MY path, nonetheless, and I'm on a quest to survive and succeed.

Mickey Button Day! -- UPDATED

It's 8am and we are headed to Children's Mercy Hospital - Surgery Clinic to have Tyler's g-tube replaced from the Pezer to the Mickey Button. I will update how it went as soon as we're home and settled. To everyone who may not know.... this is an outpatient surgery.

It's now 12:20pm and we are home and Mommy just 'hooked' Tyler up to his feeding using the new apparatus. It is quite different than what we had before, but as with anything, we'll get used to it and find our niche with the device.

Tyler did fantastic (aside from a 30 minute bout of crying from the procedure itself- which was a little painful) during the "quote unquote 'surgery'".... however, it was nothing of the sort. All the nurse did was pull out his old one and push in the Mickey Button. No medical equipment was used, except for her hands. After that was done, we had to go to Radiology and have a stomach xray done to make sure the Mickey was in the right place. The xray was to show us that fluid still goes only into the stomach and not into the space cavity between the stomach and the abdominal wall.... everything appeared to be in great working order. We will have to go back to the surgery clinic once every quarter (3 months) to have a new Mickey Button put in as they wear faster. We were happy to hear that, to Tyler, changing it out will only feel like a woman changing out her earrings.

I will continue to update as the days go on. So don't forget to stop in once-in-a-while to check on his progress. Bookmark us to your favorites: www.breuerfamily.com

Quote of the Week

"I may not have gone where I intended to go, but I think I've ended up where I needed to be." -Unknown

Reflection:
What a beautiful statement. For everything, in God, there is a reason. I'm blessed to have given birth to my two sons, from whom I have learned so much from; patience, understanding, and a newly-found deeper love in my family and Jesus Christ.

Finally a few recent pictures of my boys!

Day 45 of being home!

So it's been a long time since anything has been posted about Ty's progress... but it's been busy, time consuming, and difficult for Mommy as I've finally adjusted to life at home.

There has been a lot that has happened in these 45 days. First off, let me say that Tyler is doing fantastic in our eyes.

In the beginning, Children's Mercy Hospital had set us up with a Home Health Nurse to visit Tyler once a week until his second surgery, but the stinkin' Case Worker, assigned to Tyler from Blue Cross and Blue Shield, denied him of Home Health care. She deemed him, "NOT HOMEBOUND." Can I just vent here for a minute? How in the world can an infant diagnosed with a very rare, one sided-heart condition NOT be homebound? He isn't supposed to go anywhere but to and from cardiologist appointments and pediatrician appointments. AND, Tyler has a gastric feeding tube. He takes nothing by mouth. Is that not reason enough for him to be granted Home Health care? So instead of a nurse coming to the house to check on him, I've been given a scale to weigh him every Monday and we visit our pediatrician and cardiologist once a month.

On October 26th, Tyler was able to spit up. That really concerned us because we were told that he wasn't ever going to be able to do that since he had the Fundoplication (the stomach tightening surgery). So, on October 30th we went to CMH's Radiology and had his stomach checked out. It showed that the Fundo wasn't failing and that there was no explaination for why he could spit up. But he does on occasion. It's never much, like 2 teaspoons or so, but still. I've started getting second thoughts about making him go thru that surgery if he was going to just spit up anyways, you know? The ONLY good thing about having his stomach tube is that I know he gets his heart medicines and that they get ingested.

On November 5th, we had a cardiologist appointment and they did the first echocardiagram since his stay in the PICU. It showed that he may need the cardiac catherization done sooner than right before his second surgery (when it was originally scheduled for), but that is still up in the air. What the echo showed was that he has a portion of his heart, the tail end of the aortic arch, that might be starting to close up. But his cardiologist said what she saw could be a number of things right now and that this is fairly common in babies with his condition. There is a number of things that have to be factored in and accounted for (like his entire heart isn't growing consistant with itself, maybe he needs an adjustment in his heart meds, maybe it was a faulty echo readying, or maybe it's "just the way Tyler's heart formation is going to be" until his second surgery, etc...). So, another echocardiagram is scheduled for December 3rd, to check it out and see if anything has changed. I know, this may sound kind of serious, but the docs don't have us worked up since his blood pressure and pulses were great that day, and all of his other vitals, that they check on heart babies, were right where his needed to be. Our cardiologist told us to "not worry yet."

We start Occupational Therapy on Monday the 19th. This is just a precautionary measure to make sure he doesn't lag behind in development. She'll be checking his gross and fine motor skills for his age, as well as working on getting him to start taking things by mouth. (ie: a bottle or the breast) I'll also be learning infant massage!

Mommy has nicknamed him "Booger"...and he almost laughs everytime I say it! Tyler loves to smile and coo. His favorite sounds to make right now are Mahhhh and Ooooo. He moves his legs and arms a lot and is very alert when he's awake. He follows Andrew and I around the room with his eyes, turning his head to stay with us. He knows his name. He startles to loud, sudden noises, but is quite content when he hears big brother's obnoxious behaviour. Tyler could sit for hours just staring at Jarrett in amazement. It's his favorite past-time during car rides. He sleeps wonderfully at night! So much better than Jarrett ever did at this age.

Tyler is slowly gaining weight. However, it's not as fast as a healthy baby would be gaining it. A healthy baby gains about an ounce a day, but Tyler only gains about an ounce every three days... because his heart works overtime. When he was discharged from CMH on Sept. 30th, he was 7 lbs 2 oz. and this week he was just shy of 10 lbs. So not too shabby. Once we get to November 30th (exactly two months after coming home) he'll probably have gained a full three pounds; averaging out to 1 1/2 lbs. a month. The Doctors say they want him between 14-18 lbs. before his next surgery. I see that as a realistic goal for his rate of weight gain right now. He is still receiving my breastmilk thru his feeding tube every three hours.

We had a great Halloween and we pray for a wonderful, uneventful Thanksgiving and Christmas. Thanks again for all the love and support we've received from everybody out there. Hopefully it won't be long again before I find the time to post another update. It's just not as easy to find the computer time to do so now that we're home.

Happy Holidays!
Love, Kathleen

A HAPPY UPDATE!

We'll just let the pictures give the update today! = )

New PICTURES!

Update - September 24th

At 8:35am, on Friday the 21st, the doctors took the ventilator out and Tyler is doing so well that it is surprising everyone! ! !

His PICC line was removed this morning and he started his first bolus feed at 2pm. He gets 2.25 ounces of breastmilk fortified with additional calories over a span of 2 hours thru his g-tube.

At 6:45pm tonight, he was discharged from the PICU and moved up to the cardiac floor. Let's all pray that he doesn't wind up in PICU the remainder of this hospital stay.

He is also starting to make some sound when he cries, so the doctors will be ordering a swallow study to be done later this week. IF it shows that he is swallowing liquid properly to the stomach, Mommy just might be able to start nursing him once or twice a day! The doctors say they want him to be close to 18 pounds by his 6 month Glenn surgery, so we'll still use the g-tube for the majority of his meals to ensure he is getting adequate caloric intake. And he's got a long ways to go considering (as of today) he's lost over a pound and a half since birth.

Moving to the floor has made it one step closer to being able to come home. Will keep posting updates when we can. But as always, remember, no news is good news!

Update after fundo and g-tube surgeries

Tyler was back in his PICU room by 3:15pm yesterday. His surgeon, Dr. Sharp, said it went smooth and that Tyler is a strong little guy. He told us before surgery that the most critical time is surgery itself and that recovery should be fairly easy if the nurses keep on top of his pain. He'll be able to start feeds thru his g-tube sometime on Friday. We know that this is the most safest way to feed him, but seeing him with the g-tube was admittedly hard to see. However, he's already been thru one major surgery to save his life, why not take the extra procaution to prevent aspirating (which was the purpose of today's surgeries).

There is talk of trying to remove the ventilator again sometime soon, but we're pushing to wait until Saturday for that. We just want to give Tyler as much time as possible to get strong and ready for this last time off the ventilator. If he can't breathe on his own after this try, the trach will become more of a necessity than ever.

Thanks for all the wonderful messages of support. We truly are blessed with the friends and family we are surrounded with!

Some brief updates

Here are the latest Tyler updates for everyone.

On Monday, September 17th, the following was done:

-He had his chest drain tube and the staples removed.
-He had a repeat echo done. It showed slight improvement of his one-sided heart function compared to the Friday echo.
-He had a chest x-ray done, and it showed his lungs were really wet, so they cultured the mucus and it is growing some bacteria. He's been put on antibiotics to clear it up.
-He had a repeat floroscopy done, and it showed that his diaphragm is working properly and that it is not the cause for why he doesn't do well without the ventilator.

Tuesday, September 18th:

Tyler had a very nice, calm day yesterday. Mommy brought him a special present - a crib mobile! - and hung it for him to see. The brain stimulation will be so great for him to be exposed to. He's starting to open his eyes more and more now, and was very content.

Today, Wednesday, September 19th:

-His g-tube and fundo surgeries were supposed to happen early this morning, but were slightly delayed because his heparin drip wasn't stopped early enough during the night nurse's shift. So they have to wait until the next lab to make sure his blood isn't too thin. Heparin thins the blood so there were clotting concerns with him going in at the morning surgery. They are talking about it being rescheduled for 11am today. If he doesn't get in then it will be around 3:30pm. Either way, this surgical procedure will be happening today, we are told.


Stay tuned for updates on today's events. Thanks for keeping us in your prayers. We feel them!

Another small step backward

Tyler is back on the ventilator now. Turns out he wants to put us through a rollercoaster!

We also got some bad news a few nights ago. When Tyler was intibated this week, one of his vocal chords was injured and is now paralyzed. We're still learning a lot about what this means, but basically, he won't be able to eat/drink through his mouth for quite a while - at least a year, anyway. That being said, he will have a feeding tube surgically inserted soon, so that he can begin to get nutrients. This was quite a brick for Mommy to be hit with, as she was very much looking forward to the day that she could finally nurse and bond with that beautiful baby boy. On the bright side, we're excited to see how he does when he begins taking nutrients through the tube, and Mommy has plenty of milk stored away to provide to that baby when the time comes! The other obstacle we may face is the high possibility of a trach being inserted to keep Tyler's airway open now that his vocal chord is causing some issues. Either way, we trust that God will take care of him through everything, and we continue to have strong faith.

Love,
The Breuer Family

Another Ventilator Update

As of about 830pm last night (Tuesday night), Tyler has been off of the ventilator and doing EXCELLENT! His one hour oxygen checks all came back perfectly! He'll have another oxygen check around 4 am today, and as long as that one comes back within normal range, he'll be on the road to recovery withOUT the ventilator doing his breathing!

Thanks for all the prayers and continued love and support. Keep it comin' - it ain't over yet!

= )

Ventilator Update

At 230 this morning, the hospital called and decided to take the ventiltor out of Tyler's chest. They said that he seemed to be doing well-enough to give it a try.

After an hour or two, they called again, saying that the Doctor's weren't seeing enough deep breaths from Tyler, so to stay on the safe side, they put the ventilator back in. They said they'll try again when he's a little more awake, allowing more time for the sedation to wear off.

One step forward, two steps back, sometimes!

Tyler's Chest is now closed!

The surgeons decided to close Tyler's chest yesterday afternoon - a few days before they had originally thought it would happen! They said he was doing excellent, and his swelling had subsided enough to go ahead and close his chest. Let the healing begin! Now he's being weaned off of the sedation and hopefully will be taken off of the ventilator within a few days. Will continue to keep you updated!

God is good. We believe in the power of prayer!

Tyler's Update - almost 2 days post-op

Just a quick update to let everyone know that Tyler is doing WONDERFULLY! There is even talk that the doctors may *possibly* be closing up his chest today or tomorrow. They've started him on lasix to encourage him to pass urine and help draw any excess fluids out of his body.

We promise to keep everyone informed.

Thanks so much for all the love and support. We couldn't get through any of this without it!

Surgery Update #4

Andrew and Kathleen have checked into their room at the Ronald McDonald house so that they can be as close to Tyler through the night as they possibly can, *just in case.* As of right now, Tyler has been in his new room in the PICU for about an hour. Although it was quite hard on Kathleen to see her baby after such a big operation, she is sounding very high spirited and ready for the next step. Jarrett is missing Mommy and Daddy very much, but he's had a fun day at his friend, Cooper's, house, and knows Mommy and Daddy needed to be with Tyler today.

I will continue to update as I get them!

Andrew and Kathleen's friend,
Trish

{{{{ HUGE HUGE HUGS, MY FRIEND, HUGE HUGE HUGS! }}}}

Surgery Update #3

The Surgeon is out of the operating room, and beemed with smiles as he updated Mommy and Daddy! Tyler will be back in his room in about 45 minutes.

The Surgeon said Tyler was one of the best candidates for this surgery that he has ever operated on - meaning - his outlook is very good now! He said Tyler's heart is completely on schedule, except for his left ventricle. Everything else is RIGHT on target for Tyler's stage of development. Overall, he is extrememly pleased with today's operation and also said Tyler came off of the bypass machine just beautifully - nothing to report.

= )

Surgery Update #2

The important part of the surgery is now complete, and Tyler will soon be taken off of the bypass machine and as soon as he's stable, they'll get him set up back in the room in the PICU unit.

Thank the Lord! He's made it through the biggest part so far!

updates will follow . . .

Surgery Day Updates

Tyler's incision was made about 30 minutes ago, so surgery is well underway! Stay tuned for current updates throughout the day.

TYLER'S SURGERY

Just an update to inform everyone that Tyler's First Open-Heart surgery will be performed sometime tomorrow in the late morning. We greatly appreciate all the love and support that we have been showered with, and hope everyone will continute to lift up Tyler in prayers and healing wishes.

We pray that our baby does well during his surgery so he may join his family at home where he can be held and cuddled and kissed. We also pray for Tyler's big brother, Jarrett, who is struggling to understand all that is happening to his baby brother and family. And we pray for strength to push forward and be strong for Tyler tomorrow.

Love You All,

The Breuer Family

Jeremiah 30:17 "For I will restore health unto you, and I will heal you of your wounds, saith the Lord."

P.S. The surgeon's nurse came in today and said baby Tyler should be allowed to be held! So, after speaking with her, Tyler's nurses got him ready and Mommy and Daddy were able to hold him for much of the day. Thank the Lord for nurses who care and love - we need them!

Tuesday Night Update - Happy!

Just a quick note to let everyone know that Tyler *finally* opened his eyes for the very first time tonight! At 9:30 p.m., he decided he wanted to see the world and started opening his eyes. For almost thirty minutes he looked around at his surroundings while Mommy and Daddy talked and touched him. It was wonderful! And he looks even more like his Daddy than we knew - he even has Daddy's blonde eyelashes!

So blessed . . . oh, so blessed. = )

More Pictures

Please enjoy these pictures taken by Grandma Debbie. Thank you, Debbie! These will certainly be treasured.

Surgery Update

Tyler's surgery has been postponed . . . stay tuned for an update.

*** UPDATE ***

The doctors just want to take as many precautions as they can. Surgery will be either sometime this week or the beginning of next week. They want to double check lab work and be absolutely positive that Tyler is free from any infections and ready to go through the operation.

Thanks for all the thoughts, prayers and good wishes. We'll continue to keep you as updated as we can through this site.

Love,

The Breuers

Tyler Patrick Breuer

Tyler Patrick Breuer was born on Thursday, August 23rd at 7:59 in the morning. He weighed a healthy 8 pounds 10 ounces and measured 20 inches long.

A few hours later, Tyler was diagnosed with an extrememly rare heart condition called Hypoplastic Left Heart Syndrome. More information about this condition can be found by following this link: http://www.childrenshospital.org/az/Site502/mainpageS502P0.html

This site was created to provide updates to our loving friends and family members. With so many people to inform, we thought this would be an effecient way to keep everyone updated without making a million phone calls everyday. = )

Please continue to check this site for updates. We will do the best we can to keep everyone on top of Tyler's progress. The outpouring of love and support from all of you is appreciated and means so much to us. We love you all.