Parent Experiences

Parent Experiences

  
 Luka during his hospital stay and today.
 

From Luka's Dad

After the heartbreaking news that our newborn baby boy had a hole in his heart, the thought of surgery and a hospital visit left us feeling numb with fear in the weeks preceding the operation.  My wife, who had spent the last 11 years as a cardiac nurse, knew all too well the risks involved in an open-heart procedure.  The doctors and nurses at LLUCH ultimately provided excellent care for Luka and soothed our anxiety with informative updates during subsequent checkups.  While our son's full recovery could only be credited to God our Great Healer, the staff at Unit 5800 were his closest angels.

 

 
 
 Jaylen during his hospital stay and today.
 
From Jaylen's Mom

The two things I found most helpful during my son’s hospitalization were:
1.    Use all of your support systems
2.    Write all questions down during stressful times since it is easy to forget

 
 
 During Angelina's hospital stay and today.

 From Angelina's Mom

What did I learn? What did I take away, besides the obvious of having to learn more than I wanted to know about the heart and cardiac meds?
1. Your world WILL turn upside down. I know that doesn’t sound positive, but it’s the truth. Fall back on your support system! Allow family and friends to help in any way possible. Don’t decline help! Don’t feel bad asking for help or taking it!
2. It is ok to mourn the loss of a perfectly healthy baby. A friend and nurse on the unit who is a cardiac mommy herself taught me this. By no means does it mean you don’t love your baby!
3. Ask questions!!! Even if you have already asked the same question several times before! I’ve been an RN for nine years, seven of them were as a pediatric nurse. When they are talking about your baby, about open heart surgery it, it just does something to your brain! I would follow everything the doctor said to me while he or she was in the room. And then they’d leave and I would either draw a blank or I’d all of sudden come up with a ton of questions. Thankfully everyone is very patient about this. After all, they want you to be the best prepared as possible!
4. Take care or yourself and the rest of your family. I honestly believe that even though I spent a lot of time at the hospital, I still gave my other two children love, affection, and spent time with them. But when my daughter was finally discharged from the hospital, it was months before my kids would let me go anywhere without them.
5. Educate yourself and your family. It’s a smoother ride when everyone, including the kids, is involved. You’ll be surprised when the little ones ask you regular questions about your baby’s health!

  
 Zoe with nurses on 5800.
 Zoe today.
 

From Zoe's Mom

My life changed and it felt like I was awake living a nightmare when my healthy six month baby was diagnosed with a rare congenital heart defect, ALCAPA. My child went into heart failure with only 8%  heart function. My daughter was stabilized and given open heart surgery. At a year and a half, she had additional surgery because the left coronary artery scarred down and was no longer functioning. At that point, my family was told that the artery was no longer functioning and my daughter would have to live with what she had. My toddler had a very uncertain long term recovery after the heart attack that she suffered at birth. I had no clue what pediatric heart disease was and how it would affect my child’s life. The simple things that other parents took for granted were a challenge for my little girl. The endless tests, office visits, and not to mention the financial burden. The best thing I did was ask questions, take notes, and if I didn’t understand, I asked until it was clear. The two things that I told myself I was going to do if my child beat this was give my child a normal life and educate myself since I had to educate my child with this condition.
    It is now four years later and Zoe is going to celebrate her fifth birthday. She is a recovered child, not cured. She lives every day with heart disease and functions with one artery. The medical appointments are now twice a year and she has been off of medication for one year now. Zoe is in preschool, plays on a soccer team, and is in gymnastics. I could write a book on this four year experience and parents would not believe me. When I tell parents what my family has been through they probably think I am exaggerating because Zoe now is the poster child of a normal healthy little girl.
    Zoe laughs when I tell her everyday how lucky I am to have her.

Other Advice From Parents

Find a support group. I found that even though family and friends love and care about your child, they truly do not understand what it means to be in your shoes. They may not fully understand the emotions and day to day care that you are experiencing because they are not responsible for your child on a daily basis. Finding a support group where families are dealing with or have dealt with your situation can be very comforting; they are able to relate to your situation as they have experienced it as well.

Don't feel guilty. When you have to leave your child, know that he/she is in great hands. Having another child at home, I felt torn about the amount of time that I was spending at the hospital. I had to remember that my older child needed me too. I also found it difficult to feel rested when I would sleep at the hospital because the noise there is around the clock. I quickly learned that being sleep deprived was not only bad for myself, but for my sick child as well.

Create a line of communication. Everyone will want to talk to you to find out how your child is doing. Spending hours on the telephone explaining the situation over and over can be draining. Create a blog, send out emails, or use a website such as CarePages that assists families with telling their stories. These types of communication allow you to share ups and downs with everyone while only having to explain it once. People are able to follow your journey and offer support without hounding you with questions all the time. The communication line also allows you to connecct with other families that are experiencing the same situation as you.