spreadingchdawareness.com

Catching Up

admin — Fri, 27 Aug 2010 02:46:01 +0000

I will be posting more stories of our heart friends. I would love to get your CHD child’s story posted. Please email me at erinkewer@comcast.net if you would like your story posted.

Sandra Kays Matters of the Heart

admin — Wed, 02 Jun 2010 16:28:31 +0000

Matters of the Heart is a beautiful compilation of stories that tell about the daily lives of the CHD world. Inspiring, supportive and understanding; this work is not just a must read but also provides comfort to those families who struggle daily to keep their lives together. To those families: You are not alone, we are all here, supporting and standing with you. Hand in Hand and Heart to Heart we are walking together through each other’s journey.

May “Matters of the Heart“ bring you some peace and comfort and the knowledge that you are being understood in your daily trials and tribulations.

Purchase the book at Sa ndra Kay Store

Braden’s Story

admin — Tue, 18 May 2010 00:12:25 +0000

Braden Cruse Knebel arrived on December 7th, 2009. He was 7 lbs 12 oz and 19 ½ inches long. We found out Braden had multiple problems early on in the pregnancy. He had a Cystic Hygroma on his neck measuring 17 mm, an ASD, multiple pin hole VSDs, Coarctation of the Aorta and probable Noonan’s Syndrome. When he arrived everything looked like it had resolved itself, but when we took him to see the pediatrician for a routine check up at a week old, he had to be sent directly to the Cardiologist for an Echocardiogram to check his heart because something just didn’t seem right and Braden had no palpable femoral pulses. As soon as they checked his heart they called the ambulance and Braden was taken to Children’s Healthcare of Atlanta. He indeed had Coarctation of the Aorta, which is basically the Aorta in his heart was severely narrowed and needed surgery. This is a life threatening condition. He also had pin hole VSDs in between the lower chambers of his heart in his septum, but these need to try to close on their own due to the location, size and Braden’s size. He was admitted on December 14th and had surgery to repair the aorta December 16th They had to use his Left Subclavian Artery to rebuild his Aorta arch because he also had Hypoplastic Aorta Arch. Two days later they attempted to take him off the ventilator, this lasted 16 hours and he had to be reintubated. He stayed on the vent another day and was able to come off once again. Braden was transferred to the Cardiac Step Down Unit on December 19th. Braden stayed in the hospital until December 23rd. Bringing him home for Christmas was the best present we could have ever asked for! He had a wonderful 12 days at home. On January 4th I decided to take him to the hospital because he began to decline, he wasn’t eating well and just wasn’t acting like himself. We remained in the hospital for a week, they told us that it was likely related to reflux and intolerance to his formula so we switched his formula and he started reflux medications. The day before we were supposed to go home they informed us Braden’s pressure in his lungs had changed and he needed a Heart Catherization to see how much blood flow was going to his lungs from the holes in his heart. They decided a second surgery to place a PA band around his pulmonary artery was necessary to help control his breathing and slow down the blood flow to his lungs until the holes close or until Braden was big enough they could attempt to close some of the holes with another surgery. On January 12th he had his second surgery. Once again he struggled off the vent and had to go back on. A week later we brought him home. He was admitted again in March and diagnosed with Parainfluenza which is another form of the flu. After two days in ICU and two days on the floor we finally brought him home! We returned to the hospital on March 5th for oissues with his pulse ox again, it dropped into the 50’s and 60’s. They discovered he was aspirating bits of formula so they did a procedure called a fundiplication where they take the top of his stomach and wrap it around his esophagus so he cannot reflux or vomit. Braden also received a G-tube. A G-tube is a feeding tube in the belly. They take the stomach and bring it up to the wall of the abdomen and stitch it in place and put a tube into the belly. The outside is called a Mic-Key Button. It opens up so we can put formula directly into the stomach. He is allowed to try to eat by mouth but we must thicken his feeds first. On March 29th Braden went into respiratory distress and fluid overload and was admitted to the ICU. He was in the hospital for 5 days ridding him of the fluid. On April 14th he did it again. He spent a day in ICU and 4 days in the Step Down Unit. Another Heart Cath was done and the oxygen in his lungs was only 80% when it exited the lungs. He was sent home with oxygen as we await for Braden to tell us what is next. He has been a mystery to his doctors and surgeons from day one. They have told us that he will likely need to get the PA band removed in the next 3 months. At that time they may attempt to close up some of those pin hole VSDs. His lungs seem to be getting worse even though the holes are getting smaller. We will be following up with a pulmonologist soon to determine if the has any sort of lung disease or if it is indeed all heart related.

Jason’s Story

admin — Tue, 18 May 2010 00:06:29 +0000

My son Jason Hoffman was born June 9,2009 When he was born he was blue all over. After staying at the hospital for the required 4 days we was released to go home. I knew something was wrong with him but the doctors all kept telling me he was fine just had a little jaundice and was had to go into the doctor the next day to test his jaundice levels and see of they had gone down. When we went to the doctor the next day they said his levels was still up and we needed to return back the following day for another test. That night he was not much for eating and still had a blue tint to him and in the middle of the night he started choking on his own salivia. I told the doctors that they needed to do more test because something was not right. They finally checked him out and told me that he had a slight heart murmor but was nothing to worry about they go away on there own but they was gonna go ahead and do a echocardiogram just to make sure but they was sure he was fine. The next evening around 4:50 pm I recieved a phone call from Arkansas Childrens Hospital saying that I needed to have Jason there at 8 in the morning. I ask the lady if there was something wrong since I had yet to hear from the doctor where I live and she said no Dr. Best just wants to get to know your son. The next morning we got up at 5 am to start our drive to ACH. After arriving to ACH they did another echo on him and 3 different doctors came in to review it then they sent us to another room to wait for Dr. Best. I will never forget the words out of Dr. Best as he entered the room the first time I ever met him he says “There is something wrong with your son but I can fix it” my heart sank into my chest and I asked what is wrong with him? He says no one told you before you got here? I said no. (the doctors where I lived was supose to tell me but they didn’t instead they refused to see him anymore) So he proceeds to tell me my son has a VSD, ASD and His pulmonary valve was narrow due to only having 2 sleeves instead of 3. They place him on some lasiks and our goal was to et him to 6 months of age so he could gain some weight and be better prepared for the surgery. We went for checkups to ACH every 2 weeks and he made it to 2 1/2 months then they had no choice but to do the surgery he was not gaining weight he was losing weight. September 1, 2009 he went in for his surgery and was in surgery for 7 hours. He was out of surgery for approx an hour and we got to go back and visit with him for the 1st time. We was back there visiting and hadn’t been back there 5 minutes and the paged the surgeon 911 in panic I asked what’s wrong and one of the nurses said his chest is filling with blood. The surgeon comes in and tells me that is was probably a stitch or something they will take him back and fix it. They came into the waiting area to update us after he was out for the 2nd time and he said the pacemaker wires that they had placed in him was cutting a hole into his aorta and the hole was getting bigger everytime the heart would beat. He was on the vent for 7 days, then day 8 we went to the step down unit! Today he is a healthy child they have to watch him and make sure the patches grow with him and since they stretched the pulmonary vavle instead of cutting and patching it they have to make sure

it doesn’t narrow back out. So far so good. God works miracle and so does ACH!!

Kayla Hoffman

Provide support to children with heart defects and their families

admin — Tue, 20 Apr 2010 17:08:47 +0000

Goals

Improve access to support by increasing number of groups by 30%
Expand educationa materials for distribution to more than 4000 parents
Improve access to resources by creating interactive resource database
Improve awareness to decrease death rates and increase life expectancy
Improve quality of life by increasing care package distribution by 50%

Overview

Congenital Heart Defects (CHD) are the most common birth defect, impacting 40,000 infants each year. Twice as many children die from CHD than all forms of childhood cancer combined. Families who have children with CHD are often in crisis and need the support Mended Little Hearts (MLH) provides.

Mended Little Hearts currently has 50 groups in 22 states, providing peer-to-peer interaction, educational programs, hospital visiting, and creating awareness using media and other instrumentality. We will increase these services by creating more volunteer-led community support groups and by generating awareness in communities and in the nation. This will enhance medical care and result in more children and families having access to much needed resources and emotional support.

Deliverables
*At least 25 new community support groups
*Production of 10,000 heart defect awareness packets
*At least 5 press mentions about congenital heart defect impact
*150+ hospital care packages

How will the 50K be Used?
$ 20,000	materials and travel for mentors for new community group creation
$ 10,000	production of congenital heart defect awareness packets
$ 5,000	produce care packages for families with children in the hospital
$ 10,000	creating informational packets for hospitals to give to families
$ 5,000	creating social media and media materials to promote awareness

Go to http://www.refresheverything.com/mendedlittlehearts and vote!

Heart Mom Pendant and Necklace Giveaway

admin — Tue, 20 Apr 2010 15:28:44 +0000

I have purchased this neckace from http://www.etsy.com/shop/lucky10 She makes all types of items for CHD families.

I am giving away a Heart Mom Pendant to one of our Heart Moms. I know Mothers Day is coming up so I wanted to run this giveaway.

There are several ways to enter, and you can enter more than once. The more you enter, the higher your chances are of winning.

1. Leave a comment on this post.

2. Post about the giveaway on your blog and link back to my blog http://www.spreadingchdawareness.com and leave a comment letting me know that you did so.

3. Go to http://www.speadingchdawareness.com and follow my blog then come back here and leave a comment and let me know that you are following. If you are already following, you already have 1 entry, just leave a comment below and let me know you are already following.

4. Twitter about the giveaway and link to http://www.spreadingchdawareness.com . Then come back here to leave a comment letting me know you tweeted about it.

5. Post about this on Facebook and link it back to me. Make sure you come back and leave a comment letting me know you shared it.

Winner will be picked May 7th 2010

Value $22.99

CHD Car Magnet

admin — Tue, 20 Apr 2010 15:00:15 +0000

Purchase them today at http://kimsheartbeat.com/

Diet Coke GOES RED for heart disease! ♥

admin — Tue, 20 Apr 2010 14:57:12 +0000

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Preparing for your CHD Baby’s Open Heart Surgery

admin — Tue, 06 Apr 2010 14:47:56 +0000

I came across this great article that was posted by CHDbabies It will be very helpful to those that have CHD babies going in for Surgery. Thank you so much for writing this article.

Heart defects come in all types, from minor to major. Defects can occur inside the heart or in the large blood vessels outside the heart. The heart defect may need immediate surgery or may be able to safely wait for months or years. In most cases, the timing of the surgery will depend on how sick the baby is.

The heart defect may be repaired in a single surgical procedure or may require a series of procedures. Surgery may involve opening the heart to repair defects or repairing defects of the blood vessels.
The type and timing of surgical repair depends on the child’s condition and the type and severity of heart defects. In general, symptoms that indicate that surgery is needed include the following:

Blue or gray skin, lips, and nail beds (cyanosis), meaning there is not enough oxygen in the blood (hypoxia)
Difficulty breathing because the lungs are “wet,” congested, or fluid-filled (congestive heart failure)
Problems with heart rate or rhythm (arrhythmias)
Excessive workload on heart that interferes with breathing, feeding, or sleeping
Poor weight gain and difficulty feeding (taking too long for your child to eat, not eating at all)

You’ve been told your baby needs open heart surgery. Knowing what to expect before and after your baby’s operation will make the experience easier for the whole family.

Chances are your newborn is in the intensive care unit, or NICU. This is also where most of your infant’s pre- and post-operative care will take place. To reduce the risk of infection, hospitals often restrict visitation to parents only. You should wash your hands before holding your baby, and avoid close contact if you are sick. An older child will likely be taken care of in a pediatric intensive care unit (PICU) after surgery.

Many parents say the hardest part is saying goodbye to their babies as they are wheeled off to surgery. Feelings of fear, sadness and guilt are common. Talking to a nurse or social worker about these emotions can help you deal with all the stress and anxiety.

In the operating room -

During open heart surgery, an incision may be made through the breastbone (sternum) and between the lungs (mediastinum) while the child is under general anesthesia. For some heart defect repairs, the incision is made on the side of the chest, between the ribs (thoracotomy) instead of through the breastbone (sternotomy).

It is sometimes necessary to use tubes to re-route the blood through a special pump (heart-lung bypass machine) that adds oxygen to the blood and keeps it warm and moving through the rest of the body while the repair is being done. This machine does the work of the heart and lungs during the operation.

Heart surgery for children requires a specialized team of health care providers:

Pediatric heart (cardiovascular) surgeons
Pediatric anesthesiologists
Pediatric heart-lung (cardiopulmonary) bypass pump technologists
Pediatric surgical nurses and technicians
Pediatric intensive care physicians and nurses

Heart surgery requires intensive and extensive monitoring, treatment and coordination by the entire team. Heart surgery for children may take as many as 12 hours in the operating room.

Recovery -
After heart surgery, the child will be moved to the neonatal or pediatric intensive care unit (NICU/PICU) to be constantly and closely monitored and treated for several days. When you are reunited with your child, the tubes and equipment you’ll see around your child’s body can look scary. Your baby may still have IV lines in place for fluids and medications, be on a ventilator to help with breathing and have chest tubes to drain blood and fluid. Some babies may need extra oxygen, which is given under a clear plastic tent. During this time, your child may have the following:

An Endotracheal Tube is usually inserted through the mouth, into the windpipe or trachea, to provide an airway. It will be taped over the child’s nose and mouth.
Your child will also be on a respirator to help with breathing. This is a mechanical device that ventilates the child by providing air to and from the lungs while removing carbon dioxide from the body. Your child will be kept sleeping (sedated) while on the respirator.
One or more Central IV lines placed in a vein that leads to the right atrium. Their purpose is to monitor central heart pressures and give fluids and medications.
An Arterial Line, which is a small tube in an artery (one of the vessels that pulsate) to measure the blood pressure and oxygen levels.
One or two Chest Tubes which are placed into the space between the chest wall and the lung, called Pleural Space. These are placed after heart surgery to prevent accumulation of body fluids. The chest tubes drain air, blood, and fluid from the chest cavity. This drainage should diminish in amount daily.
A Nasogastric Tube (NG tube) to empty the stomach and give medications and/or feedings for several days.
A Foley Catheter, which is a tube placed in the bladder to drain and measure the urine for several days. It is held in place by a small balloon, which is inflated in the bladder after insertion.
Oxygen may be needed after surgery. It can be delivered by room air, through the ET Tube, through a mask or through a tube called a nasal cannula.
Your child will be monitored with a Pulse Oximeter. It is a noninvasive sensor that is clipped to yourchild’s finger, ear or toe to monitor blood oxygen levels.
There will also be other heart monitoring equipment near the bedside in the room. Leads will be placed on your child’s chest to monitor heart rythmn, heart rate, respiratory rate and any central line pressure readings.

Your child may also have pacemaker wires in the chest in case a pacemaker is needed to regulate heartbeat and rhythm.

Your baby will be sedated and sleepy for a while after surgery. The length of the hospital stay will depend on what type of surgery was performed and how quickly your baby recovers. It may take a few days or a few weeks.

Going home -

When your baby can go home, you’ll have to be careful to avoid exposure to illness. That means you may need to stay inside the house for a while with limited amount of visitors. Your baby may also have to take many medicines at different times of day. A chart with a dosing schedule can help you keep track. The doctors will provide other instructions on how to care for your baby, like keeping the incision clean. They’ll also show you the safest way to pick up your infant after surgery.

It’s hard for parents to see their children go through something like surgery, even when it’s so important for their health. Knowing what to expect in advance can make the experience a little easier to bear.

Please feel free to email me at chloesmama1@yahoo.comif you have any specific questions about our personal experience with Chloe’s NICU stay after birth, NG tube, medications, home oxygen and PulseOx Monitor, cardiac catheterization, balloon atrial septostomy, open heart surgery or Gtube/fundo procedure. I am a heart mommy here for you in any way I can!

Rylie’s Journey with HLHS

admin — Tue, 06 Apr 2010 14:27:57 +0000

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