Monday, January 31, 2011
Wednesday, January 26, 2011
Kids have that ability to stop and smell the roses (or take the pictures) that us adults get so busy and forget all about. I love my daughter for showing me the beauty in life. I think she is going to a photographer, look at these, and she is only 4!
Tuesday, January 25, 2011
One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you".
He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She 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 okay?"
The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She 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 out, and you will be fine."
Then Jesus gives the angel more details about his plan. He says, "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday. And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."
Today is a very sad day. Wyatt Greeno lost his battle with HLHS last night, he was just 6 months old. My heart is broken, Wyatt IS a very special little guy to me. I "met" his mom Jillian online when she was pregnant with Wyatt. I assured her it was all going to be okay, I encouraged her to look at Colin and know Wyatt will be just like him. We religiously read each others blogs, commented on Facebook updates, we became friends who never met.
I had the PRIVILEGE to watch Wyatt grow up for 6 months and I am truly going to miss him. I will miss seeing Jillian's silly postings on facebook about his squishy cheeks and his love of Green Bay football. I will miss watching him grow.
My heart is broken for Jillian and her husband Lucas, who are wonderful parents having to go through the most horrible thing a parents can dream of. They love their son very much. They do not deserve this, no one does.
This morning I didn't want to take Colin to school, I wanted to just hold him, cuddle him all day, keep him close to me. It’s so hard to see a child pass away, but especially one that you feel a bond with. I am angry that we have to deal with CHD's, how unfair it is to our children who have to face this. I am scared today, I am scared about my son's and other HLHS children's future. I am so sad for my friend who is on the toughest journey of her life right now.
Some people have questioned why I get so involved with people I don't know. That I have enough on my plate without added stress. But I don't see it that way. I have friends who have kids with HLHS. I have friends to talk to about feeding issues, cardiology appointments, echos, chest x-rays, drainage tubes, level of activity for Colin that other people just can't understand.
My university I graduated from (Texas A&M) has a great quote that I thinks fit's a heart parents perspective to a tee.."From the outside looking in, you can't understand it. And from the inside looking out, you can't explain it." Texas A&M is known for it's traditions and often is described this way when people don't understand them. This is how I feel about being a heart mom. Most people can not understand the journey we take, and it's too hard to really explain what goes on to those to who do not live it themselves.
Rest in peace dear sweet Wyatt. You are loved by so many. May you now be a guardian angel to all the HLHS warriors you have left behind. Jesus has now made your heart whole again.
Monday, January 24, 2011
We will start with dear sweet Wyatt. He is 6 months old with HLHS and just had his Stage 2 (Glenn) surgery. He had his Stage 1 in July and had some complications due to a gene mutation called MTHFR, which cause him to have lots of blood clots. But he got better after his Stage 1 and was able to go home in August. He has spent many months at home being a very happy healthy baby. His parents love him so much and are so proud of him. Then came time for Stage 2 and he has had more complications. This weekend he was not getting blood flow to his left lung, so they had to reopen him and put in a stent to open it back up. Then yesterday his oxygen and blood pressures were too low, then he coded..his heart stopped. They were able to do compressions and get it beating on it's own again. He is currently on a heart and lung bypass machine giving his body sometime to rest and rebuild strength. I "met" Wyatt's mom when she was 30 weeks pregnant with him. I have followed him for 8 months and have a great opportunity to make friends with his mom and watch him grow into a happy 6 month old that loves his Green Bay football. I love his squishy cheeks and his smiles. It is so hard to see this family going through this right now, it breaks my heart. I know Wyatt is strong and will pull through this. You can following more on his story through his caringbride page… http://www.caringbridge.org/visit/wyattgreeno. Just after typing all this, I checked his carepage again and found.. "I will say that things are really bad right now and Wyatt probably will not make it through this. He fought very hard but there aren't many more options." Please pray for a miracle for this family!
Next is Hope, she is 16 months with HLHS. Hope's story is truly one of a miracle, but she needs more prayers for her miracle to keep going. At Hope's last check up, her heart function was great, but she has recently been diagnosed with kidney dsyplasia in both of her kidneys. In kidney dysplasia, the internal structures of one or both of the baby’s kidneys do not develop normally. Fluid-filled sacs called cysts replace normal kidney tissue. Kidney dysplasia usually happens in only one kidney. A baby with one working kidney can grow normally and has few, if any, health problems. Babies with kidney dysplasia affecting both kidneys generally do not survive pregnancy, and those who do survive need dialysis and kidney transplant very early in life. Hope's mom knows that there is now a change of kidney transplant along with Hope still needs the Stage 3 of the HLHS surgeries. Hope is a beautiful little girl who brings the true meaning to her name. I also met her mother through her blog, http://wodzisz.blogspot.com/, and have become friends over the past year. Her mom is an amazing woman and mother. My heart goes out to them and I wish for them that Hope's kidneys will not be much of an issue.
Aly Jean will be 2 on Katherine's birthday (June 30th). They are preparing next month to have her 3rd Stage surgery (Fontan). The hospital Aly goes to prefers for the Fontan to be done around 18-24 months..as ours like to do it around 3-5 years. Neither one is better, just different schools of thought. Aly is an amazing little girl, she reminds me a lot of Colin. She is a fighter, one tough cookie, and I know she will do great with her surgery. I met her mom thought heir blog, http://www.alyjeansspecialheart.com/, over a year ago. She has been there to ask questions to, to share hope and fears over our children, to laugh about silly things we have to go to, and to help pray and reach out to others. Jenny is a great friend and a strong person. I pray that Aly's surgery and recovery go well and she is back home really soon afterwards. I pray for her family of having to hand over your toddler to the surgeons, for that is a very scary thought. I know it will be hard BUT Aly has a GREAT family and they will make it through this.
On some great news, Nadine and her husband gave birth to a beautiful baby girl Leyna on January 18. Leyna's big sister is Hailey, an HLHS angel. Hailey passed away on December 2, 2009 at the age of 4.5 months old. I hold a very special place in my heart for Hailey, I think of her often. She reminds me how precious life is and it can never be taken for granted. I watched Nadine and Josh lose their precious daughter, but they have never stopped fighting for her. They are amazing parents and I am so happy for them and their new addition. Leyna has a great gaurdian angel watching over her.
Please pray for Wyatt, Hope, and Aly! These families mean so much to me.
Tuesday, January 18, 2011
This weekend was cold & wet, so we had to find indoor ideas to keep the kids busy. Saturday we went to the Houston Boat Show. The kids had a blast getting on all the boats, pretending to drive them, fish off them, look for buried treasure. They also loved the cotton candy and pretzels we got. We climbed on so many boats.
Monday, January 10, 2011
I haven't done a Colin & HLHS update in awhile, so here it goes:
- First of all, I want to remind everyone to come out and support Team Colin at the It's My Heart Walk on Feb. 19. You can read more about it here.
- Colin is now 21 months old..terrible 2's right around the corner :)
- Colin is now 22 lbs (5%) and 32 inches (10 - 25%).. YEAH.
- We are not as concerned about weight as before. He is gaining and eating well. I want to make sure he is eating healthy and not just a lot of calories to bulk up weight. I am excited about his height actually catching up.
- His next cardiology appointment is March 30 (6 months from his last one). At that appointment he will have a chest x-ray and EKG, does not need an echo this time.
- Last check at oxygen saturations, he was 87%, which is his normal for him. He is anywhere from 85% - 90%.
- His speech is growing more and more each day. He is now putting 4 words together. The other day I was in the bath and he went and got Matt and said "Dada I wanna bath". When he wants something, he says "Please Mama Please" I love that!
- He is a climber.. He can now get onto the kitchen table chairs without any help. Climbs on the stools in the kitchen. We are constantly telling him not to stack his toys to climb up :)
- He is able to recognize pictures out of his books and point to them.. I ask him where is the dog, cat, train, butterfly, apple, orange, bear, frog, pig, goat, and a lot more and he can point them out. - He can throw a mean tantrum and sometimes will cry when told no.. Getting into the terrible two phase.
- He loves to snuggled and cuddle.
- He still gets his monthly RSV shots durning the winter.. he has had three so far.
- Plan at this time is still to have the Fontan at about 4 ish.. But that can always change depending on heart function.
- A lot of people ask, will his heart be fixed after that.. The answer is no.. They can never fix his heart, the surgeries give him a better chance to survive. He will always be on medicine, always go to a cardiologist, there might be more surgeries or even heart transplant. The future is unknown.
I try not to think about the last point too much, though it's hard not to. Colin is special is so many different ways, his heart is just one of them. You would never know by looking at him that he has had 2 open heart surgeries. You would never know by his energy level that his heart doesn't function at 100% and he has less oxygen levels in his blood than most. His color is pink, rarely do we see blue in his face. Heart kids for the most part don't look sick, don't act sick, and we never try to act like he is either. We go on about our "normal" lives because that's the whole point of these surgeries, to give him a "normal" life. One day I will have to explain all this to him, I dread that. As young as Katherine is, we always talk to her about Colin's special heart and his boo-boo's. She kind of understands, but it's a hard concept at 4. It's a hard concept at 31 :)
Tuesday, January 4, 2011
It will be a great day to come and get some exercise (I know that's everyone's New Year Resolution) and enjoy the family post walk party afterwards. Last year at the post party they had moonwalks, performers, food vendors and, it's a great time to get to know other heart families.
Team Colin's goal this year is to raise $3,000 and have 50 walkers (last year we had 30). Please come out and support a great cause! All proceeds benefit It’s My Heart mission to provide support, spread awareness, educate and advocate those affected by Congenital Heart Defects by creating alliances with fellow families, hospitals, support groups and community.
We will have new Team Colin shirts this year, we are in the process of designing them right now. If you would like a team shirt, we have to have the final order with shirt sizes in by January 31. The cost of the shirt should be about the same as last year.. about $15/shirt.
If you want to participate in the walk, please click here, http://imhwalkforchd.kintera.org/keepthebeat/teamcolin, the fee is $25 to walk and you can donate more on top of that if you choose to.
If you are unable to walk with us, you can still support us, by going to this link, http://imhwalkforchd.kintera.org/keepthebeat/colineyring.
For more information on the walk and event details, please go to the It's My Heart Walk web site at http://imhwalkforchd.kintera.org/faf/home/default.asp?ievent=439392
2010 Heart Walk
Congenital Heart Defects are the #1 birth defect.
Congenital Heart Defects are the #1 cause of birth defect related deaths.
About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year)
Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research.
Though research is ongoing, at least 35 defects have now been identified.
4-8% born with CHD have Hypoplastic Left Heart Syndrome - Which is what Colin has.