Update on Heart Catheterization and 2nd Surgery!

Hello everyone, well the Heart Cath went great, We checked in the hospital at 530 in the morning and then at 630 they took us to where his room was.Liam did so good since the last time he ate was at 1030pm and he wasn't allowed to eat after 12 and he got up about 330 am and he was full of smiles like always!!
About an hour later they came and got him for the Cath Lab, we got to go down to the lab and go inside and be with him until the doctors came, so we undressed him and got him comfortable on the table that he was going to be on for the procedure. About 15 min later the doctors were ready to get things started with the anesthesia and so we went to the waiting room and waited until they called us to go to the recovery room which was about 4 hours later. They said once Liam woke up he could go back to his room, well we waited and waited and waited and waited and Liam would not wake up he would open his eyes if we said his name but he would still just go back to sleep,so finally 5 hours later my little guy woke up! We got back to his room and he wasn't allowed to eat formula just clear pedialyte so he drank that down and he was very fussy and not happy, i never seen him so mad before :( he fell asleep alot and woke up mad and then they let us start him on formula. We thought we were going home but they told us he will be staying overnight, which we really weren't prepared for. about 2 hours later Liam's surgeon came in and told us that he looked great just a little narrowing nothing to worry about right now, and everything is still doing what its suppose to be doing, and that Thursday he had another heart patient surgery but it got cancelled because the patient was ill and wanted to know if we wanted to take that slot for Liam. My heart had stopped because i was not ready for any of this, if it would have been an emergency then i had no choice, but he did say that he understood if we couldn't because it is short notice, he just thought since we were already going to be in the hospital then it would be easier, but we chose not to do the surgery on Thursday, because i did want to be able to get ready not just try to get in the Ronald Mcdonald House and pack and say goodbye to the kids since i left Tuesday morning and the kids hadn't seen us all day and they wouldn't see us until the next day. So this morning the Surgeon and the Pediatric Cardiology team had a meeting about Liam and decided that we could pick which date for the surgery. So we had discussed last night when was a good time for Liam's surgery which in my mind i wish i didn't have to choose but of course i need to get back to reality, so they gave us the available dates and we picked Friday March 14th.So in 2 weeks we will be back at the hospital and atleast we get to spend more time with Liam and the kids before we are back on the Roller Coaster Ride. We have to be at the Hospital on Thursday March 13th for all his labs and chest xrays and to check into the Ronald Mcdonald house and then we all stay the night at the Ronald Mcdonald house and he gets checked in at the Unit at 6am. Please continue to pray and i hope these next 2 weeks go by very slow, i am going to try to get the pictures up that we took from the hospital soon

Heart Cath Update

Hello, sorry i haven't updated in a while. I have been real busy dealing with sick kids for the last 3 weeks including myself and trying to keep Liam from getting ill. Glad to report that Liam did not get sick the whole 3 weeks this household was sick whew!!! Liam is 5 months old today!!! Where did the time go? He has done so much in the last month, he loves to play and he discovered his voice a couple weeks ago and loves to talk all the time, i thought he was crying because he has been so quiet and i would check on him and he is just talking its so cute! He loves to play and laughs at everything. I will try to get more Pictures up soon my camera card is full so now i have to develop those and get more pictures! Well i got the call and Liam's Heart Cath is set up for this Tuesday Feb 26th, so we have to be checked in at the Hospital at 6am. So please continue to pray that the procedure goes smoothly with no complications and that he stays well for this procedure since there is still a little virus going on with the kids here in the house, so i have been sanitizing everything every day and i was sick Last weekend and through half the week. I will update and let you know how the Heart Cath Procedure went
Thank You for all your continued prayers.

In Memory of Pastor Terry Clark

I just learned yesterday that Pastor Clark has passed away 2 nights ago and that he had suffered from a heart attack. Anyone that didn't know Pastor Clark, he was a great man, reminded me of my father. Caring, funny and a lot of wisdom and not quick to get away always made time to talk to you. Pastor Clark did me and Jerry's wedding ceremony and he also helped us get our girls into Emmanuel Lutheran School. Kyra Hope went from the 3 year old class to graduating Kindergarten and Aryanna was there from 3 years old to 4 year old class. I am forever grateful for Pastor Clark with getting the girls into Emmanuel Lutheran. The teachers there were wonderful and worked with the kids and they saw Pastor every Wednesday for Chapel. He has done other amazing things for my family also his kindness and prayers for Liam there are so many things i can go on about Pastor Clark. The girls were just talking about him the other day they asked when we came for a visit if we could go see Pastor Clark and i had told them Definitely! He is a special person in my family and will always be remembered and will always be in our hearts. You are so much going to be missed!
THANK YOU PASTOR CLARK FOR EVERYTHING
The Rev. Terry D. Clark,
Senior Pastor

CHD AWARENESS WEEK

Today is the first day of Congenital Heart Defect Awareness Week.Congenital Heart Defects affect more children born each year than any other birth defect. They occur in 35,000 to 40,000 births each year in the U.S. alone. They are the number 1 cause of neonatal and infant death. Give to CHD research..be a blood and tissue donor, and encourage others to be, and make a diference in a child's life today.

February 14th, is A Day of Hearts - Congenital Heart Defect Awareness Day!

* A candle loses nothing when it lights another fire... * Help spread awareness of our children's number 1 killer!
I am posting a poem by heart mom Stephanie Husted, who explains so eloquently what it is like to have a child with a serious heart defect.

You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked...`"What'a a CHD?"

I could quote terminology...
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-ays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of call to his pediatrician...
(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD.

Liam's Cardiologist Update

Today Liam saw his Cardiologist, and she did an echo, the Echo revealed it was time to go ahead with the next surgery. The Conduit they placed in his heart for the surgery is now starting to Narrow. So they are setting up a Heart Cat for him, I will post when that is being done, they are going to call me with the Appointment. What the Heart Cat is going to do is check all the pressures for the lungs and to make sure that everything has grown correctly and they check his ventricle and his arteries to make sure those are good so he can heal quicker too after surgery
After the Cat, all the cardios and the surgical team get together and have a meeting on Liam and then they set the date for his surgery. But the appointment went well and she said he is still smaller than she like him but he is gaining almost a pound a month, he was 10 pounds and 23 and half inches. I will update when I get a phone call from the doctors in Miami