Saturday, August 13, 2011

I Believe in Miracles, I Live With One! By: Kristi Pena

Today is a special day for us! (Chris Peña, Justin Peña) This is the 2 year anniversary of Christopher's hospice discharge.I am continuously grateful for the abundance of blessings God has given to us. BELIEVE in miracles! They DO happen! Here is the post from the day we got the news ♥ My son's heart is CROSSHEALED!!!!!!!!!!!!!!!!!!!​!!!!!!!!!






I am still sitting here trying to process the events of this afternoon. Chris got a call from Dr. Smith, the cardiologist, and my heart just dropped. The same for Chris. He just listened with the strangest look on his face and then asked if he could put doc on speaker phone so that he didn't have to try to relay the info, doc knows how I am about questions. Anyway, what he called to say was that he did not feel like our visit was finished yesterday. The whole subject of hospice recert. was heavy on his mind, so he went back and looked at Christopher's echo again. Then he had Dr. Gaines look also. What they have found is a very significant improvement on Christopher's heart. He told us that with his dx, Christopher is NEVER supposed to get BETTER in their opinion. He is floored by this and says that the Beta blocker can be attributed but there are still many questions. He wants to have Dr. Frasier from ACH, the transplant coordinator look at the echo also and get input. This was the same doctor who told us that Christopher would never live 6 months without a transplant and if we didn't do it then we chose to kill him. But he lived! Anyway, doc is waiting to see what is said from her, he is leaning towards NOT signing the recert for Christopher's hospice. He said that Christopher's function has improved so much that he is no longer hospice material. Again, I stress, we were told that THERE IS SUPPOSED TO BE NO IMPROVEMENT WITH THE DX OF LVNC. Put NOTHING past God!!!!

Christopher is still sick and he will still be special needs,and be on a ton of meds, but my baby boy is HEALED in the name of Jesus Christ! This I truly believe and have had that faith the whole time.

Y'all, this is such wonderful news and I don't have the words to express how I feel. JOY is not enough. My child WILL LIVE! (this I already believed, but having the doctors back you up on it is just SOOOOOO huge)MY BABY BOY WILL SEE KINDERGARTEN,:) I AM LITERALLY IN SHOCK.

God still continues to bless us daily and I will not forget how much we have been blessed this day of August 13, 2009, this is a life-changing day for my family. We can now look to the future. I will never forget the lesson learned though, to live life to the fullest. No one knows when their time will come.

GOD IS STILL IN THE MIRACLE BUSINESS!!!!!!

Sunday, August 7, 2011

Brady: A Little Guy with a Big Heart!



"Through sincere, broken-hearted prayers- we've found God’s heart for us as his children"- what beautiful words from Kelly Archuleta, who is mother to little heart warrior, Brady.


Here is Brady's story...

It was September 17, 2008...the day our lives would forever change.
I had gone to my 20 week ultrasound, and was so excited to see our baby and find out the sex. My Mom went with me to my appointment. Frank was at his own very important appointment. We had been part owners in a family business, and he was at the closing. It was a big day, in many respects, and there was a ton of excitement in the air.

The ultrasound technician can tell you the sex of your baby, but cannot discuss anything else she sees. When it was time, she asked if I was ready to hear what the sex of our baby was. "It's a Boy", she said. I had a feeling it was a boy and was just so excited to have another son. After that, I had an appointment to see my OBGYN. I have known her for years. She took me in the room and closed the door. I said, “It’s another boy, exciting huh?". At that point I remember very little of the conversation. I think I zoned out and only saw her mouth moving after she told me that something was wrong with the baby's heart. I couldn't move and I was in shock.
She came over and asked if she could pray for me. At that point, I knew things were out of my control completely. The only person that could give me hope was God.
I was then sent to see a cardiologist. He did an ultrasound and focused on the heart. It would be the start of many ultrasounds to come.

He diagnosed Brady with Pulmonary Atresia with VSD also known as Tetralogy of Fallot with Pulmonary Atresia. What that means is, there is a hole in the wall of the heart and an absent valve in the Pulmonary Artery. The doctor told us that when Brady was born, he would have to have a shunt put in at a few days old, and then a major operation at around 4-6 months. As he grew, he would have to have that valve replaced. The heart is formed by the time the baby is 8 weeks old, so the doctor told us we would not see any changes.

Brady was born on January 27, 2009, at 11:56 a.m. at St. Luke’s Hospital. He weighed 6 lbs & 13 oz, and was 19 inches in length. I got to hold him very briefly before the nurses took him to the NICU (Intensive Care for Newborns). Brady was there for a few days and then transferred by ambulance to Children's Hospital. He then had his first operation when he was 6 days old. This operation was to place the valve that would allow the blood to flow and provide oxygen. The operation was successful. We went home after 10 days in the hospital. I could not wait to get home to be with my oldest son and husband, was ready to be a family again.



Brady did great the first 7 months. He had regular doctor's appointments with the cardiologist. With each visit we had, his operation was pushed further and further away. That was a good and a bad thing in our minds. Brady had a very sheltered life. He was our "bubble boy" that rarely left the house. We were so worried about germs and Brady getting sick, that we just felt safer at home. Brady got sick for the first time around 7 months old. We ended up at the ER, and then were eventually transferred by ambulance to Children’s Hospital. He had a double ear infection which caused terrible flu-like symptoms. Brady then became dehydrated. His oxygen level dropped to the 50's and 60's (normal is 95).

After that, he had chronic ear infections for the next 4 months. He was in and out of the hospital for different things, and had a number of ambulance rides.
At 11 months old, he had tubes put in his ears. Thankfully, the tubes made a world of difference. He was able to stay healthy for his upcoming “Big Operation." As Brady grew closer to turning 1, his lips and finger tips began to turn blue. He was breathing a lot faster, and his oxygen saturation levels were in the low 70's and
60's. Brady's normal levels, at the time he was born, were in the 80's.
This meant he was outgrowing his shunt and the "Big Day" was coming.



Brady had his second operation on February 23, 2010. The operation was 10 hours long. The nurse would give us updates throughout the day. This was open heart surgery that required a bypass machine. On a bypass machine, Brady’s body temperature was greatly reduced, his heart was stopped, and his circulation/survival was dependent upon a machine. When the operation was done, the doctor came out and gave us an update. The operation was successful! The doctor said that Brady had completely outgrown his shunt, and couldn't have waited any longer.

We were finally allowed to see Brady. He was hooked up to so many machines, and had tubes coming out everywhere while sedated. It was unexpectedly disturbing. It is no exaggeration when I say, he looked like a pin cushion. I cannot fully express the feeling of seeing our baby boy, lying unconscious on the hospital bed with over 20 tubes, IVs, and a ventilator secured to his motionless body.

Through this past year, I have only allowed myself to cry a few times. I always told my husband that I had to stay strong for the family, and strong to take care of Brady. This is one of those times I let myself shed a few tears. It wasn't the tubes and machines that made me cry. It was the machine that showed Brady's oxygen level at 100%. I had never seen that number before with Brady, and I had never seen his skin look so pink.

The first part of Brady's recovery was rough. He caught RSV and some other viruses while in the hospital. He couldn't keep anything down. We eventually went home, but Brady had to be on oxygen. Within two weeks of his operation, he really started to come around, and no longer needed the oxygen.

By 6 weeks post-recovery, Brady was like any other normal kid. Looking at Brady, you would never know he had such a rough start in life, that is, unless you looked under his shirt. He had more energy than any kid I know. After his heart was repaired, he was able to finally play outside for the first time. He fell in love with the outdoors, and now spends most days outside.



After going through so much with Brady, we had to re-train ourselves and try to treat Brady like a normal kid.





We could have never made it through this last year if it wasn't for all the people praying for Brady and our family. We literally had people praying all over the world for Brady for over a year. It is during difficult times like those that we get (and are still getting) closer to God. The main learning experience and joy that we can come away with in this situation is, that through sincere, broken-hearted prayers- we've found God’s heart for us as his children.

Psalm 147:3 "He heals the broken hearted and binds up their wounds.”



Thank you all for caring about our little guy with the big heart!♥
~Kelly Archuleta

Sunday, July 31, 2011

Monday, July 25, 2011

From Angee Brock...


Usually when I get on the computer, the first place I go is Cross Healed Hearts to read about others. Riley, my youngest of 4, is a heart patient. She was diagnosed post delivery, and over the past year, we have had new discoveries with her heart and some issues with a blood disorder. I know that our last visit to Riley's doctor's appointment, prayers were laid upon us and her visit was great. Through CHH, I have met great families who are strong in faith and I am SO grateful they are in my life. By sharing the story of my hero, my daughter, I pray that it helps someone in my position, as well as others' stories have helped me.
Being a single mom of 4, one who is a heart patient, I need all the support and prayers I can get. My faith only grows when I help others and others are there for me. I thank God that I met Megan and others through CHH. I am so blessed that I have such a great support group of parents that understand and are behind not only myself, but my children as well. Megan, I love you and I love CHH. Thank you so much for what you are doing. Keep the faith, pray more, and hug your babies!!

Angee

from Lauren Celeskey...




Cross Healed Hearts run by Megan Bell has been so amazingly sweet to me. I've received support, a CHH pillow & shirt, and prayers, all off which have truly meant a lot to me. The prayers and support give me strength in my own personal fight with my Chronic Illness (CHD/Heart Condition) and Cross Healed Hearts has provided some to me with open arms. I appreciate this organization so much! Megan and everyone else who has a part in it are the sweetest & kindest people who welcome others with open arms.

Lauren C.

Friday, July 22, 2011

From the Kasik Family...


I wanted to write how blessed I have been to find CHH. Our Molly was diagnosed w/ Turners Syndrome when I was 16 weeks pregnant. The road throughout my pregnancy has been a bumpy one, not knowing first if our little one would make it through and also trying to juggle all of what we are anticipating to come after Molly's birth. Because of prayers heard from so many including the CHH group, our Lord has allowed our baby to be healed from many of the conditions that the medical staff originally thought would mean our baby girl not making it to birth. The support you give to parent's like my husband and myself has helped us through the journey and has reminded us to always keep our faith in our Lord Jesus Christ. We thank you from the bottom of our hearts and will never forget all that you've given to us and our family. We can't wait to display the special pillow you have sent us in Molly's nursery! It is a wonderful reminder of God's unfailing love for us all!

Erin Kasik

From the Ayscue Family...



David and I wish to thank all the volunteers of Cross Healed Hearts for your hard work, and above all, your prayers. Our four year old daughter, Caylen, was born with heterotaxy, including fourteen heart defects, multiple spleens, primary ciliary dyskenesis and sensory processing disorder. She has had three heart surgeries and several others, and has a pacemaker. The past four years have been incredibly difficult, with so much uncertainty and suffering. The most powerful medicine anyone has given us is prayer. God has used these prayers to work many miracles in our lives and to provide strength, courage, peace and comfort. We are so very, very grateful for the prayers and support of people like you - what you do has a huge impact on lives, whether you know it or not. Caylen loves her CHH pillow. We use it as her prayer pillow, a tool for comfort, and a tangible reminder that God loves her so much. Having her little pillow with the cross is a wonderful way for us to help her focus on God and Christ's love for her when she's upset or hurting. Thank you so much for using your God given talent to help our little ones!

The Ayscue Family

Tuesday, July 19, 2011

From The Adams Family...




Our daughter Berlyn was diagnosed with Aortic Stenosis shortly after she was born in 2010. Not only did this come as a great shock to our family and friends, but it also brought as sense of sadness and fear as we did not know what to expect for our daughters future. At 7 weeks Berlyn had her first balloon dialation.

Just recently our friends at Cross Healed Hearts provided her with a beautiful pillow that she sleeps with every night and for her to bring with us in any future procedures she must endure, but it also has provided us with a sense of hope in knowing that so many others care for our daughter as well. Little Berlyn loves her soft pillow, and words cannot express how truly grateful we are for the simple act of kindness that Cross Healed Hearts has provided to not only Berlyn but our whole family.

It helps to know that we have an extended family of people we've never actually met but are here for us whenever we need the love, support and prayers.

Thank you Cross Healed Hearts for all you do!! Everytime I see the pillow I am reminded that I am not alone in this and God is in control over little Berlyn's life.

Love,

The Adams Family

CHH Update...


Ian and his big sister♥


Berlyn♥


Brooklyn♥


Emma and her big sister♥


Juliana♥

*deliveries not pictured: Noah, Molly, and Spencer♥

More heart "cough" pillows, Sharpies, and a few blankets were delivered to Blair E. Batson Children's Hospital last week, one heart pillow went out to miracle boy, Ian Martin, CHH applique pillows were mailed to 5 sweethearts in Wisconsin, Georgia, California, Michigan, and Vermont, while one is ready for a little angel here in Mississippi, and a heart pillow/blanket were mailed to a special little guy awaiting heart surgery in South Carolina! We are also in the process of making a new batch of heart pillows for Batson with our remaining materials. I ♥ it! God is great!


An incredibly huge "thanks" to ...Lacey Martin, Lisa Baldwin, Mynette Minshew, Tara Minshew, Laura Beauman, and Carolyn Bradley for donating Sharpies, Linda Turner for donating time/materials to the applique pillows, Carolyn Justice, Judy Simmons, and Laura Beauman for donating time to the heart "cough" pillows, Pearl Upper Quest: Sherry Downs and Becky Wigglesworth for making blankets, Nicole at Private Collection in Madison and Barbara at Willingham's in Vicksburg for sharing CHH hair pins and information, Judy Busby at Fabs and More in Vicksburg for helping us out with fabric cost, and as always to all of you who PRAY for this ministry as well as the children we are able to touch!

Next up...CHH T-shirt Fundraiser! I got the design today, and asked for a few changes, but it is going to be REALLY cute! The funds raised will again go towards materials for our CHH Batson Projects. Be on the look out- coming soon!♥