The Burgh Steps Up!

Once again, the hometown of my parents (and kind of my adopted hometown too) has shown the world its greatness. Children's Hospital of Pittsburgh has stepped up to the challenge and will donate their services to Baby Laith's family. He will be given a heart pump until a suitable donor heart can be found, and this will keep him alive in the meantime. CHOP has a 90% survival rate for babies...meaning 90% are still alive at 5 yrs of age. Laith is still in need of our prayers, so please keep praying for him and for his family.

Thank you!

Fabulous News!

Baby Laith and his parents are on their way to a transplant facility! Thanks to everyone who helped in any way they could. I will post more details when I have them! Or, read about them on the site, once they're posted...

laithdougherty.info/

PLEASE...Help this Baby!

I am sick to my stomach. Physically ill.

I just read about a precious little baby, Laith, who needs a heart transplant. Insurance will not cover the procedure, which costs about 1.5 million, so his family is forced to raise the money. Laith will not survive without this transplant. PLEASE...read the following sites and consider helping, if you are able. And please pray for this precious little man and his family. Thank you.

www.katu.com/news/40122542.html

laithdougherty.info/

Warrior Threads

Drew and I went shopping yesterday for outfits to wear after he has his surgery. Old Navy and Kohls were both having sales, so I picked them up for next to nothing. I really wanted something to express the message we're trying to convey about Drew's resiliency and toughness in undergoing open heart surgery at such a young age. So, he has a one piece, button up outfit that says "Tough Guy," a onesie that says "Mommy's Tough Guy" and button up PJs that say "Mom's Hero." This is in addition to his t-shirt from CafePress that states "I have a CHD heart...and you thought you were tough." He also got some other clothing items he needed, most notably adorable swim trunks for summer (in two sizes, so he should be all set) and the UV protection shirt to go with them. Bring on the beach!

Drew was the perfect shopping companion, content to nap in his stroller the entire time. I was reminded of a line from my baby book that my Mom wrote..."she was a very good girl, slept the entire time, and was admired by all the customers." Just substitute boy for girl, and you have the 2009 version of that statement. I am sure my Mom is watching over her youngest grandson now and always.

Walking Billboard

Ahhh, Cafepress...is there ANYTHING you don't have? I became aware of this site when I was still pregnant with Drew. It's where we got him t-shirt gems such as:

"My Sister is a Chocolate Lab"
"I Drool Black and Gold"
"I'm So Cute, I Must Be Italian"

Now, I've discovered, thanks to my heart mom friends, that they have CHD Awareness t-shirts. Drew and I are ordering the following:

http://www.cafepress.com/chdfamilies.356354627
http://t-shirts.cafepress.com/item/chd-womens-light-tshirt/215033529
http://t-shirts.cafepress.com/item/infanttoddler-tshirt/182795306
http://www.cafepress.com/chdfamilies.29431415

We encourage those of you who are so inclined to raise awareness by using your person to advertise this issue!

The Beginning

It occurred to me that many of you may not know how Drew's journey with CHD began. Looking back, it should've been obvious when the struggles with breast feeding began...the fact that he passed out after two sucks or just plain didn't wake up to tell us he was hungry. But, being first time parents and listening to the Doctors who said "newborns are very sleepy," I just thought it was a problem with me, or between us, and that nursing wasn't compatible. Considering the fact that when we started him on a bottle we still had to strip him down, put a cold wash cloth on him and constantly stimulate him at first, this maybe should've clued in our Doctor further...but no murmur, no need to worry, I guess. In the end, he came around and started eating voraciously and putting on weight. He also started spitting up...we thought that was the extent of our woes and that the scariest bridge had been crossed when he started eating well.

Drew's murmur was first detected at his 1 month appt. Our Ped listened to his heart for awhile and looked up at us and asked, "did we notice a murmur in the past?" I said, "no." She advised us to contact the Ped Cardiologist at Beaumont and have him looked at in the next two weeks or so. She ended up having to call herself and speak to the Doctor to get us in. Hello, more clues, but I had high hopes this was just an innocent murmur. In July, we went for his first appt with Dr. Cutler. They did an echo, an EKG, weighed him, etc... Dr. Cutler came in with a med student, got our history, listened to his heart and examined him. She then gave us the news. At the time, Drew had mild-moderate pulmonary stenosis and she was optimistic that it would go away on its own. But, she had a duty to educate us on what all could happen and she did. We left in a daze and scheduled a follow up for the end of August.

The day I was supposed to return to work, we went in for his follow up in the morning. The ran the same tests and Dr. Cutler came in, did the same exam, and told us it had gotten worse. She wanted to run his case by the Cardiologists at Children's because she was on the fence about doing the valvuloplasty then...at 3 months of age. The staff at Children's decided against it and wanted him to come back in 4 months...the end of December. On December 29, 2008, we went in for another follow up. This time, Dr. Cutler stated his pressure had risen even more...from 45 originally to 60-62 now. His heart was working overtime and had begun to thicken and enlarge. It was time to take some action. She then did an echo herself to be sure...and asked us, "was I ever not sure if the problem was above his valve or in the valve?" That's when it became clear that the problem was more involved and that a "simple" valvuloplasty may not solve the issue.

We went in to meet with Dr. Turner on February 5, 2009...he was fairly certain that the problem was contained in the valve after reviewing the echo again. As I posted previously, I wasn't as optimistic because I couldn't let myself think that and then, get slammed with the news that he needed open heart surgery. So, I decided to hope for the best, but prepare myself. And, as you all know, the valvuloplasty didn't correct the problem and that strategy served me well, to a point.

Yes, there is anger, there is sadness, there is fear...there is the inevitable "why my child?" I truly feel God has chosen us to walk this road with Drew in order to help not only him, but other babies. Our chances of having another baby with a CHD have increased, not significantly, and I'll be damned if I sit idly by and don't try to do something to potentially help my next child...or my friend's child...or a complete stranger's child. Because, in the end, every child is someone else's Drew. And every child deserves a long, healthy, happy life. Before we came to this journey, I knew next to nothing about CHD. I certainly didn't know it was the #1 defect in children. There isn't enough publicized about it. February isn't just Go Red for Women Month (a truly worth cause in its own right), it houses CHD Awareness Day and Week. I didn't even know that until the month was upon me and I couldn't do a thing to help out.

In the end, however, I am helping out. This little blog is just the beginning of this new phase of our journey. And, through this blog, I can advocate and educate 365 days/year.

Links are Up!

Please scroll to the bottom on the blog main page for a list of CHD sites we frequent. I am particularly looking to become quite active with Hearts of Hope in SE Michigan, as well as It's My Heart nationally.

New Layout/Design

As you can see, we have a new design/layout. This is a work in progress, so I am sure it will change a bit more in the weeks to come, but I wanted a reddish color for CHD Awareness and this pink was the best I could find. I've also updated the About Me section to include Bill, as this is important to and involves both of us...and Drew.

More Ways to Help

Here are two more sites to visit ...

http://www.itsmyheart.org/imh-chapters/michigan/michiana/


A walk is held at the national level annually, and you can raise money for it even without walking. I intend to help out with this in the years to come, as it looks like I missed the one this year.

http://www.childrensheartfoundation.org/

I am also looking into reformatting this blog to keep all these websites on the main page so they are more easily accessible. As I stated in a previous post, I truly feel compelled to spread the word and raise awareness about CHD. This is only the beginning of that journey.

Dr. Cutler!

I just saw that Dr. Cutler is on the Hearts of Hope Medical Advisory Board! Check out Drew's Pediatric Cardiologist. (man, I wish she had shared this with us!!!)

Hearts of Hope

I finally found the Michigan website for CHD Awareness. I have contacted them to see how I can become more actively involved. Please check out the site, especially if you live in Michigan, and consider contributing. Also, be aware I may be after you for money in the coming months as there is a walk I plan to participate in. Be afraid... ;)

http://www.heartsofhopemi.org/

Also, Drew has his surgical consult on March 12th. From there, we will schedule his surgery.

Raising Awareness

I have been doing some thinking. I think part of the reason God has given me the gift of Drew is to help raise awareness in my own little circle about Congenital Heart Defects (CHDs). And hopefully, this awareness will spread to other circles.

Here are some facts:

CHD is an anomaly of the heart that is present at birth. CHD’s cause one or more portions of the heart to develop abnormally.

At least 35 distinct forms recognized.(There is no known cause for CHD, although genetics is the number one suspect)

CHD is the # 1 birth defect and is the leading cause of birth-defect related deaths…(While it is the most common birth defect, it is the least publicized.)

CHD strikes children without regard to economic level, ethnic origin, sex, geographic location or religious beliefs.40,000 infants are born with CHD each year in the U.S.(Still, newborns are not screened for CHD’s.)

Some babies may be diagnosed before birth or at birth, some not until days, weeks, months or even years later. Sadly, too many are not diagnosed until after death.

Undiagnosed CHD’s and Childhood Onset Heart Disease cause many cases of Sudden Cardiac Death in young athletes.(Despite these statistics, teen-aged athletes are not routinely screened for CHD’s.)

There are 1.2 million children and adults with CHD alive today(CHD affects not only patients, but also entire families.)

If you are interested in helping or learning more, please visit the following sites:

http://www.chdawareness.org/

http://tchin.org/

http://www.savinglittlehearts.com/

I missed CHD Awareness Week this year, but that will not happen again. Please join me in raising awareness about this critical issue. Thank you.

The Longest Day ... Yet

The day started at 4am for me. After being woken up by a crying cat at 1:30, and not falling asleep until 3:30, I was surprisingly awake. I am guessing that was adrenaline or something. Anyway, after a quick shower and getting some things around, I woke up Drew to have some diluted juice before 5am. He seemed to think this was great, considering he nearly never gets juice and here he was, being woken up to juice. :) We headed down to the hospital to get there for our check in time of 6am.

Upon arrival at the hospital, we realized we were "those parents." The ones who seriously bring WAY too many things to either occupy their own time while they wait or help their child recover. We were loaded down with bags, which was pretty cumbersome for how quickly we had to move on three separate occasions. Our pre-op nurse, Marie, was awesome. She kept us in the loop as to what was happening and was very friendly. We had to wait for a Cardiology Fellow to check Drew out because of his congestion, so things took a bit longer. She brought in a toy for Drew to play with as our bag of tricks had long since lost its appeal. At Children's, they have an entire team devoted to doing IVs, so I stupidly thought that would go OK...not so much. That was, by far, the worst part of the morning. Her first poke didn't work, so she had to poke him again. Drew was tired, hungry and being held down while he screamed and sweated. I was so glad when it was over.

We got to hold him and go with him up to the lab, after he passed out in my arms, and were given a restaurant beeper so we could go wherever we wanted to go in the hospital. I had been OK up until I had to say goodbye to him, then I lost it. We went down to the cafeteria for awhile and then, back up to the waiting room. Finally, the beeper went off and Bill, Dad, Terry and I got to go into the lab to see what they had done. It was pretty cool to see the X-ray and the dye going across his heart, etc...but, immediately Bill and I both sensed the valvuloplasty had not done it's job. Bill noticed the restriction above the valve before I did, but I noticed the Dr's demeanor as he was describing things. I immediately became upset with the news, but this time it was anger.

Finally, we were able to see Drew. We walked into his "wake up" room and he was downing a bottle of Pedialyte. We noticed the empty one next to him. When the bottle fell out of his mouth, he let everyone know he was not happy. He looked out of it, but was trying to communicate with us. They had given him a Mam paci, which quickly became his new best friend that day. After he kept the Pedialyte down, we were able to give him formula and hold him. After the formula, he passed out again and slept for a few hours. Woke up, ate about 6 oz of formula and started getting irritated with having to lie in our arms and keep his legs to minimal movements. Dr. Turner decided to release him in the evening...by 5:30, we were on our way home. Drew fell asleep in the car and continued to sleep until after 11pm. He got up for a couple of hours, and went back to sleep until 6am or so. He has done remarkably well and has amazed us with his resilience.

We don't know when the surgery will be. We have to talk to our Cardiologist and see what she is thinking. It will probably be in the next 4-6 weeks, however. We are, of course, extremely disappointed, nervous and scared about this...but we know Drew is strong and will pull through. We thank all of your for your continued prayers and support. Special thanks to Grandparents and Aunts for coming to the hospital and helping out, to Ashleigh and Micah for the yummy meal they provided to us, and to the Boback family for the adorable Build a Bear they brought over this morning. Your kindess and generosity does not go unnoticed and is very much appreciated.

We will continue to keep all of you posted. For those of you on FB, I am going to post more pics, but this is Drew pre-op. Poor guy looks so blown out in this picture!

Disappointment

Too tired and upset to right about the procedure right now, but wanted to tell everyone that it wasn't successful and Drew will need Open Heart Surgery at some point. Grrrr. So frustrating. Will post about the procedure later...possibly heading home tonight.

Thanks again for all the prayers...keep em coming.

Waiting...

They took Drew up at 8:30, or a little before, so Bill, Grandparents Calvano, Grandparents Brown and myself are hanging out in the cafeteria. Just wanted to write a quick update...will write in more detail following the procedure.

Thank you for all of your prayers. We know they are helping our little man!

2 Med Students and a Pediatric Dentist...

Children's is certainly a teaching hospital! We had two Med Students take our history and listen to Drew's heart, followed by a Pediatric Dentist who listened to his heart for reasons unknown to us. He was very nice, and we tried to enlist his services in helping us determine if Drew is teething, but Drew wouldn't cooperate with him either. The Med Students were funny. The one was SO nervous, and English wasn't his first language, he literally read the questions off a sheet. The other guy was a bit more laid back and just interjected questions here and there. We also ran into our swim class instructor in the waiting room. Her son is facing tonsil and adnoid removal and needs approval from the Cardiologist for this procedure.

Dr. Turner is very nice, I definitely got a good vibe from him. He took us through the procedure and the structures he'll be working on in the heart. He feels fairly certain the problem can be resolved with the valvuloplasty and that Drew may never need another procedure in his lifetime. Since I have heard all that before and then was told, no, he probably needs open heart surgery too, I am just choosing to keep on my train of thought. Hope for the best and expect the worst, so I don't feel like the wind is knocked out of my sails if the problem isn't resolved.

Crappy thing is, Drew woke up congested as all hell this morning. Dr. Turner said they would still perform it if he was like this, but if he is coughing and has green gunk coming out, then they'll reschedule. I just want it done and over with so we can either move on with our lives, or deal with surgery. Of course, Drew will have to see his Cardiologist at Beaumont for the remainder of his childhood. I am hoping the congestion is related to teething, and not a cold. I've been a semi-hermit with him for weeks now...it would totally stink if he still ended up getting sick.

Drew did look pretty cute in his little hospital gown. It was a pale yellow and cotton, not like the paper ones I get to wear at my Dr's visits. He seemed very studious today and wasn't quick with his smile, which of course could also be due to the fact that he is not feeling the greatest. The EKG tech gave him a swan to take with him, which he thought was pretty cool. He did REALLY well for how long we were there.

So, that's the latest on our end. Now, we just wait until Sunday and see how he's doing, talk to the Dr. and see if we're going to proceed on Monday, or wait until another time. Will keep you all posted.

Consultation and Other Random Things

Tomorrow is our consulation with the Dr. at Children's who will be performing Drew's valvuloplasty. For some reason our insurance claim (which was approved, thank God) is being sent to another Dr. in the same practice, so I had to confirm we were meeting with the Dr. I thought we were meeting with. And we are, so that is bizarre. I am a little bit nervous, and it's just a consultation. I want to feel prepared for Monday, and I don't think I will, no matter how many questions I ask or what kind of vibe I get.

As most of you know, Drew is a bit behind with his Gross Motor Development. Partly this is due to his weight and partly due to his abhoration of tummy time. Recently, he's begun bouncing on his feet and more consistently pushing up on his arms, which gives me hope that perhaps he is trying to get somewhere. I know, I know, be careful what I wish for, but this heart thing is so taxing, it would just be nice to see some real progress in his GMD. I fear what his Ped might say if he isn't at least scootching more at his 9 month appt. But, what can I do? I can't make him move. So, it is what it is.

Sleep continues to be rare in the Brown household. We're semi-convinced Drew is teething or working on a new milestone or both. And we're less convinced, but it's still a thought, that he just simply enjoys seeing our "happy" faces at 3am. I know I am not alone in this, thanks to my BBC friends. They comiserate with me nearly daily and help me to feel normal about still not getting any real sleep 8 months into Drew's life. :)

And last, but certainly not least, my hat's off to the Steelers on their SIXTH Super Bowl victory! Woot!!!