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Greetings! |
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Summer is in full swing. During the summer, the word "family" seems to come to my mind. We spend more time with our families during the break from school. Sometimes we even travel far to visit family. As parents, family is a focus year round, especially when children are involved. It's My Heart knows how important family is and we offer a free program called Family Matching. When venturing down the road of a disease it is difficult enough to keep up with doctors, medicines and any other issues. Sometimes we neglect the need to connect with others. Online, www.itsmyheart.org, we have a program to connect families going through similar situations. Some families are new to this community and others have journeyed longer with congenital heart disease. Our database is full of families from all over the world and this is not only a great way for you to receive hope, but a wonderful way to help others. We can also connect families who have lost a child with CHD or adults that are affected. We connect families via e-mail or phone, whichever is the best for you. So sign up today to be matched to another family. Support and knowledge is a huge key to fighting congenital heart disease!
There are many activities going on throughout the chapters of It's My Heart and we hope to see you get involved! With growth comes the need for more officers and volunteers, so please e-mail your nearest chapter to get involved. If you live far from a chapter and would like to become involved in spreading awareness for Acquired and Congenital Heart Defects, please e-mail info@itsmyheart.org. We will get you started on this very important endeavor.
Enjoy your family this summer with your family and others!
Heart Hugs,
Corrie Stassen |
| Volunteer Meetings |
Meeting times and location vary by chapter.
"...no matter how big government gets, and no matter how many services it provides, it can never take the place of volunteers."
- Ronald Reagan, 40th U.S. president
For more information in your area, go to www.itsmyheart.org, Click on "IMH Chapters" to see specifics about upcoming events. Make sure you sign up on line to receive e-mails from your chapter by clicking on the link at the bottom of this email.
As always, please be considerate about germs and take precautions if you've been around anyone who has been sick. Most of our children have compromised health. |
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Quote of the Month |
"When we honestly ask which persons in our lives mean the most to us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not-knowing, not-curing, not-healing and face with us the reality of our powerlessness . . . makes it clear that whatever happens in the external world, being present to each other is what really matters."
-Hernry J.M. Nouwen
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| Dr. Heart to Heart |
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My husband and I feel like we have indulged our son because of all his medical issues. Now he is very healthy, caught up developmentally, but he is a TERROR if he doesn't get his own way. What do we do now?
Yes, raising a "normal" child is difficult. Throw in the added challenges and guilty feelings associated with medical needs and you have a difficult job. Luckily, it is NEVER too late to make adjustments and chart a new parenting course. Children need, and want, boundaries. It is very encouraging to hear that you and your husband are on the same page. Many parents feel like they are on opposite sides of a rope pulling against each other, instead of working as a team for a common goal. Here are some simple tips that hopefully will make your home a more peaceful place. Unfortunately, your little one cannot always have his way in life, so teach him some valuable life lessons now!
1. Make a plan AHEAD of time. Strategize with your spouse for specific "infractions" and set a consequence. For example, if a toy is thrown, the toy is taken away with no discussion and put in time out until he agrees to treat his toy properly. Have a time out place already in mind; for example, the stairs, a corner of the play room, etc.
2. Decide what you will do in public too! Kids know when we are out of our element. So think through scenarios and how you can still walk the line. You might have to be creative and set up situations so that you can follow through. One "good lesson" can impact behavior if they know your threats are not empty. Have a friend waiting in the car while you grocery shop just incase "Johnny" decides to pitch a fit. March him right out to the car (without saying a word) and go back and finish your shopping. He'll think twice next time.
3. Determine age appropriate behavior. Being upset when a two year old is told "no", is normal. Throwing a fit on the floor of the supermarket is not acceptable. Expecting a three year old to sit patiently for an hour without anything to do might be asking too much (depending on the personality of the child, as well).
4. Help your little one come up with appropriate ways to show displeasure/anger/frustration. Don't gloss over the feeling. Let your kids be disappointed and express it. Model for your children when you are aggravated and talk to them about how you feel.
4. If you know you are going into a potential "land mine", discuss it with your child beforehand. Use positive language. Instead of saying "You will not scream.", try saying "If you would like to talk to mommy, please use a voice no louder than I am talking now." Tell them what to DO, not what NOT to do. Let them know the consequence if the behavior is not appropriate.
5. Practice good behavior. Make a game of it! If your child needs to work on manners without being reminded, than pretend play a manners game. Do a silly dance each time they "get it right". Play the "obedience game". You give them fun commands and they are to obey. Ginger Plowman defines obedience as "All the way, right away, with a happy heart" (from Ginger Plowman's "Wise Words for Moms"). When a gentle reminder is needed, you can ask your child, "Are you obeying all the way, right away, with a happy heart?" That sounds much better than "FOR THE HUNDRETH TIME, I TOLD YOU TO..."
6. Stay in control. Remember, you are the adult, but even moms and dads can get frazzled in the moment. Take a deep breath and model how to keep your cool. Taking a deep breath can help! If you blow it, tell your child you are sorry. We expect them to apologize, so we can too!
No one wants their child to be out of control. Help bring control by setting boundaries, following through, and modeling proper behavior. There might be a test of wills to see if your new "rules" and requirements are going to stick. Just remember, you only have to stay strong one more time than they do.
Their little heart will be happy to know you are in control!
Dr. Heart to Heart would love to hear your questions, please e-mail newsletter@itsmyheat.org.
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| Heart Journey - Jaxon Parkey |
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Jaxon's story as told by his mother, Jaque Parkey.
 August 30, 2004. We were so excited for this day. Everyone went to the OB to find out if we were having a boy or a girl. We already had a precious baby girl, and I just knew I was having a boy. The doctor confirmed my expectation. Our family was perfect I thought. I was so excited about the news but a little concerned that the sonographer kept looking at our baby boy's heart. There was absolutely no way I could prepare myself for the dreadful news I would receive 20 minutes later. The family left while I was waiting for what I thought was my routine doctor's appointment following the ultrasound. As I sat on the bed in the exam room, I heard the words, "Everything looks great, except for the heart." I remember thinking to myself, "'Except the heart?' Doesn't he need that?? That is a pretty vital organ!!!!!" My doctor said, "Worst case scenario, it was Hypoplastic Left Heart Syndrome."
We are from a really small town in New Mexico, approximately 12,000 people, so they sent me to Lubbock, TX for my fetal echocardiogram and confirmed the diagnosis. My husband and I sat there while the cardiologist and his students were talking about our precious baby boy, oblivious to the fact that we were in shock. From that point on it all seems like a blur. Our Lubbock doctor told us we needed to move to Houston for the three surgeries. My OB, on the other hand, told me I shouldn't do anything, just realize he wouldn't make it. (I send him pictures every chance I get. J)
On November 11, 2004, my 16 month old daughter and I moved into an apartment close to the Medical Center while my husband stayed in New Mexico to work. I went from a town of 12, 000 to the 4th largest city in the US.
Our cardiologist is amazing. I was so afraid I would go into labor when no one was around to help. She gave me her home phone number and told me that her nanny would come and pick up my daughter if I went into labor alone. How amazing, the 4th largest city in the nation and people who care so much!!! I was induced at 9:00 a.m. on the 6th of December. Both my husband's family and my family flew to Houston for the birth. Unfortunately, that morning my daughter and my parents woke up with the Rotavirus, so they missed my sweet boy being born. Jaxon was born on December 6, 2004, 5lbs. 12 oz. of amazing beauty. All the doctors and nurses told me how perfect he would look at birth, and they were right. He was so beautiful.
The Kangaroo Crew was ready for his arrival and went into action immediately after his birth. I was only able to hold my precious baby boy for about a minute before they took him from my arms and sent him to the NICU at Texas Children's. He had his surgery on the 9th of December. I kissed him goodbye at six in the morning and I didn't get to see him again until 8:00 p.m. that night. I really have no idea how we survived that day. The entire family, except me, had the rotavirus. The day of the surgery, my parents were still sick in our apartment. My father-in-law and brother-in-law had gone home to work and planned to come back for the surgery but they both got sick and couldn't come back. My poor husband was in a hotel room very sick. My mother-in-law and one of my husband's aunts waited with me in the waiting room. The first time I saw Jax, it was just me, God and my precious baby boy. The last thing they told us before they wheeled him back to surgery was there is a small chance they would have to leave his chest open because of swelling. I honestly never thought that was possible, but to my complete shock, Jaxon had a strip of yellow antibiotic tape across his little open chest, and I could see his tiny broken heart beating away. The first time I saw him after surgery I honestly didn't see any of the wires, tubes, monitors or needles in and around him. I am sure God knew I couldn't handle it, so He blessed me and took it all away, and for that I am so very thankful. I remember the first time my father-in-law saw Jaxon after surgery. We tried to prepare him for how he looked, but I remember he walked into Jaxon's room and he turned around and left in tears.
We were in the hospital for around five weeks after the Norwood. We were home for only one night. Jaxon had a lot of gastrointestinal problems. He was receiving breast milk in the hospital and the first night we were home he started showing signs of a protein allergy. We went in and out of the hospital for three weeks when they found an ST depression on his EKG. That basically means that his heart wasn't getting enough blood. They wanted to do a heart cath to figure out where the blockage was but couldn't right away because his blood pressure was too high. They put him on a medication to bring his blood pressure down, but he was allergic to it. When I first saw him after they put him on the medication, I thought Jaxon had a stroke. He had been very alert and happy, even though he had a very painful life so far. He knew me and was happy to see me, but when I saw him in his bed it was like Jaxon was looking right through me. There was no sign that he recognized me and the light in his eyes was gone. I was scared to death. We demanded that they do a CAT scan the second night he was on the medication but there wasn't anything unusual they could find on the scan. The next day the doctor's discovered Jaxon was allergic to the medication. They were finally able to do his cath, but didn't find any blockage. They immediately inserted a feeding tube and told me to keep him as happy as possible. Through all of this they would warn me that my baby couldn't cry. Crying could literally kill him. We stayed in CVICU for two weeks and they finally put us on the heart floor, right in front of the nurses station where we waited for Jaxon to gain enough weight for the Glenn. The days turned into weeks and then months. Five months in a hospital and one becomes a little grouchy and delusional. Jaxon had his Bi-Directional Glenn when he was 6 months old. Everything went great in surgery. We got moved to the 15th floor four days after the surgery and unfortunately Jaxon got rotavirus, so back to CVICU we went. It turned out to be a blessing in disguise because my daughter was in the Emergency Room with asthma at the same time. They put both of my children on the 15th floor to help me out.
After our Glenn we spoke to the cardiologist and asked him if we should move back to New Mexico or stay in Houston until after the Fontan. They told us that if it were them, they would move to Houston permanently, so my husband sold our house, loaded the rest of our stuff and moved to Houston. My parents also decided to leave Portales and move to Houston to help me. Jaxon did so amazing after the Glenn. He had such a hard time the first six months of life, you name it, he had it, and after the Glenn, it was a whole new baby. He gained weight for the first time, he drank from a bottle, he got to play with his big sister and be a normal baby. His development was on track even after all that time in the hospital.
We were very blessed with good health after the Glenn. Jaxon spent one night in the hospital due to dehydration from a virus, but other than that we stayed as far away from the hospital as we could. My husband tried to start a new company in Houston so we could stay there, but had a really hard time. He had to move back to New Mexico in September of 2006, while my parents, my kids and I stayed in Houston to wait for Jaxon's Fontan.
I became pregnant with our third child in October of 2006. Talk about a nervous wreck. I went to the same perinatologist that I saw with Jaxon and had lots of ultrasounds. In January of 2007, they did Jaxon's pre-Fontan heart cath, and scheduled his Fontan for May of that year. May 1st, they took our baby boy into surgery again. Dr. Fraiser said there was a lot of scar tissue and it took quite some time for him to get in. They took Jaxon at 7:00 a.m. and Dr. Frasier spoke to us at 4:00 that afternoon. He said everything went great. Dr. Frasier preformed the lateral-tunnel fenestrated Fontan. We waited for over two hours to see Jaxon. Finally, I asked someone why we hadn't been able to go back and see our baby. A few minutes later a doctor came out to tell us that after surgery Jaxon had been extubated and everything seemed to be going fine. They got him to his room in CVICU and Jaxon started having a difficult time breathing. His little throat was so swollen and he was trying so hard to breath that he drew in fluid from his left lung drainage tube which caused his left lung to collapse. They had to bring the crash cart in and did an emergency re-intubation. I asked them if he was going to be ok, and the answer I got was, "we certainly hope so." That was not what we wanted to hear. They kept him intubated for the next three days.
When they were ready to move him to the heart floor, he was showing signs of drug withdrawal so they put him on methadone and kept him in CVICU for two more days. We finally made it to the heart floor only to start struggling with signs of pneumonia. After two weeks we finally got to go home. We were home for six weeks and then our family had a new addition.
Financially, we were having a really hard time surviving living in Houston, with Lance, my husband, living in New Mexico. Our kids were growing up without their daddy, and I was raising our babies alone. We made an extremely difficult discussion, to move away from Houston. We love the city of Houston and all of the people in it and pray that someday we will be able to move back as a family. Jaxon is doing so good and we have people praying for him all over the US. Driving the Penske truck away from that city was one of the hardest things I have ever had to do, I felt like all of my security was gone. Through my tears I realized that Jaxon's little heart is being held in the hands of God and He is our security. We truly love every nurse and doctor at Texas Children's and thank God for them and Dr. Frasier every night.
We are now living in Phoenix, Arizona. Jaxon has been seen by a cardiologist here and we found out what a small world we live in. The cardiologist that he saw here was actually a student of Dr. Ayers, Jaxon's Houston cardiologist. We are still having routine check ups in Houston, and will do everything possible to get Jax back to Houston if he needs to be there. We know that God has angels all around our sweet baby boy as well as all of the other babies out there with congenital heart disease. We appreciate all the prayers and support from the friends we met in Houston, and ask that they keep Jaxon and our family in their prayers. God bless each and every one of you!!!
Do you have a heart journey to share? E-mail newsletter@itsmyheart.org for more details. |
| CHD Birthdays |
Brynlee Hope Hogan
July 11, 2007
Please send us your child's birthday and picture so we can all celebrate your child's birth!
We also want to celebrate all our angels birthday's too! So, please send us their information so we can include them as well! E-mail to newsletter@itsmyheart.org. |
| Comfort Bag Drives |
 Don't forget, one way to support It's My Heart is to host a Comfort Bag Drive. The Comfort Bag program is growing all over the country. A preschool, St. Elizabeth Ann Seton Day-Out Services, had a Comfort Bag Drive in May. They collected 6 shopping bags of items! Another child, sold drinks in her neighborhood and bought $55 worth of items for the comfort bags from the proceeds! These are just two examples of the amazing generosity and innovation people are putting to good use! For more information on hosting a Comfort Bag Drive, please e-mail comfortbags@itsmyheart.org. |
| Donations |
Kyle and Connor (CHD Survivor) Joyce - In lieu of birthday presents Kyle & Connor requested donations be made to IMH-Boston!!! Happy 9th Birthday Kyle and Connor!!
Donations "In Honor Of", "Memory Of", in recognition of a birthday, anniversary or "Just Because" can be made to It's My Heart. Not only will your donation go towards helping those affected by CHD, but also let someone special know you are thinking of them in a very special way. All donations are tax deductible. Your donation will further the work of spreading awareness of CHDs, fund programs such as the Comfort Bags and Care Packages to the hospitals, etc. |
| It's My Heart Chapters |
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It's My Heart is dedicated to our mission which is to provide support, spread awareness, educate and advocate for those affected by Congenital Heart Defects by creating alliances with fellow families, hospitals, support groups, and the community. Creating chapters of IMH throughout the country is imperative to our ability in achieving our mission.
The objective of chapter development advances our opportunity to increase awareness, support and thereby advocate for those affected by CHD.
If you are interested in organizing a chapter or becoming a Regional Coordinator in your area, please contact the It's My Heart National Office at (281) 578.7343 or (888) HEART.07 or e-mail chapters@itsmyheart.org. | |
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