Joy, Peace, Fear, and Hope. These are the emotions that we feel everyday in the CTICU. Our journey has been long and we are realizing a little more every day that it will never be over. We are parents! We are parents to a child with a congenital heart defect (CHD). 1 in 100 children is diagnosed with a CHD. The numbers are astounding. Studies are still being done to see if CHD’s are genetic. So many questions flood our heads because of this. Will our next child have a CHD? If we knew if he/she would, how could we even consider growing our family? How could we put another life through all of this? How could we not ask these questions and how could we play the odds? At the end of the day, we can’t answer any of these questions. For now we take it a day at a time. We wait for more research to be done and technology to advance. We celebrate every day with Owen. We live each day like it is our last. We laugh, we cry, and we pray! We are thankful and feel blessed! Owen is 10 weeks and 6 days old! What a victory! He has survived two life saving heart surgeries! He is a mighty warrior; a miracle! In fact, I wish that there was another word to describe him. In our eyes he is that and so much more. His heart conditions combined are incredibly rare. Partner that with his neuroblastoma tumor and it’s nearly impossible to find another kiddo just like Owen. He has surprised the medical professionals with every turn and daily surprises us with his resilience and fight. Owen is our HERO!
There is a funny thing you feel being a parent in the CTICU. It is like a “Survivors Guilt”. If anything our 76 days in the CTICU has given us an empathy and understanding for each and every family in here. We have felt in the hallways the emotions of lives being lost, lives being saved and families in limbo. You can see the exhaustion and sadness among the staff when a child is so sick and a family is so lost. You can feel the joy and excitement from that same team when a child rises above all obstacles and defies the odds and barriers in front of them. That is the CTICU. Every day you are aware of the other parents around you. You become cautious celebrating a victory, a line or med being removed, or your baby being extubated too loudly because you don’t know what your neighbor is dealing with. You are also cautious not to show too much sorrow because you want your neighbor to keep the faith that all of our children will be okay.
We started this blog when I was pregnant mainly to update our family and friends on Owen’s condition. We never expected to be in the hospital as long as we have. We never imagined that this blog and Owen’s story would touch so many lives and inspire so many people around the world. We are so encouraged by the love we have received and are so happy that our journey will someday help a family tread the waters when they receive the news that their child has a congenital heart defect. With that being said I would like to give some words of wisdom to those families. Consider it our coffee break together. One heart Mom to another.
#1 – Empower yourself! The CTICU is scary. They speak CTICU Chinese in here and you will be lost. You will walk in with your sick child like a deer in headlights, fear stricken, and overwhelmed. Those feelings are okay. Feel them, process them, and then get OVER them. Bring a journal. Write down your questions (trust me you won’t remember them by the time you meet the correct professional to ask them to). Take notes during rounds. Reading these notes will really show you how much your child has improved. Utilize the whiteboard in your room. Write questions on it, goals for your child’s care, and details on your child’s condition. Note: Ask your nurse first! You are sharing your room with him/her. Think of it as his/her office. Don’t just show up and try to take over. That’s NOT how you make friends!
#2 – Research & Ask Questions – I can’t stress this enough. You have one patient. God is the best Doctor but you are the best advocate. You know your child. Whether your baby is one day old or 4 years old, you KNOW your child. Trust your parent intuition. 9 times out of 10 it is right! Ask questions. Use the tools above, do the research and be involved.
#3 – Heart Dance – Be prepared it is very common during our child’s recoveries to experience what many heart families call the heart dance. They sometimes takes two steps forward and one step back. Refer to your notes and you will see that they are still improving.
#4 – Be Positive – Attitude is everything. Try your hardest to keep a positive attitude. Focus on the victories. There will be many. By having a positive attitude you will be able to see all of them. Though some days it’s hard, they are not all bad.
#5 – People will say stupid things. – They will seem stupid because you are under a lot of stress. Try not to explode on kind people. Nurses will ask you all the time if you need water. It’s all they have to offer. Believe me, if they could offer you a stiff drink they would! They are not in the business of torturing stressed out parents. You will be asked “how are you holding up?” and “how are you doing?” multiple times a day. Figure out a response and be prepared. They only ask because they care and don’t know what to say. Before you were a heart Mom you did not know what to say either. This leads me to the next and last bit of advice.
#6 – Friends and Family – They LOVE you! They hurt with you! They want to help and fix your pain but don’t know how. They don’t know what to say because no one knows what to say. Tell them what you need from them. If they can give it to you, I promise you they will. Whether it is a text message every day, a joke, a hug, a shoulder to cry on, a warm meal, anything. They want a job! Reach out to other heart families. Find a support group specific to your child’s condition. BUT, still keep in touch with your friends. They will remind you that life goes on. How great is that? Your life in the CTICU is not forever! You will be home with your friends and family just living life before you know it.
#7 – You will never be the same – Becoming a parent changes you. Becoming a parent to a heart baby makes you look at the world in a much different light. You have been blessed to be your child’s parent. God chose you to watch over this precious child. God knows that you can handle it and you can handle it well.
#8 – Cling to your spouse – You are the only two that get it. He is your best friend, your lover, and your partner. Make decisions together. Do not make a change for your child’s care unless you are both on board. Respect each other. Take breaks, go on dates, and try to connect. Its easy to fall into a routine. Don’t let the stress of it all get in the way of the love you have for each other. Your love is the rock that will get you through.
#9 Have Faith – God chose you. Its as simple as that. Jeremiah 29:11 For I know the plans I have for you says the Lord. Plans to prosper you and not to harm you. Plans to give you HOPE and a FUTURE.
#10 You can do it!!!
I would like to end this with Top Ten benefits of having your child in the CT ICU for 11 weeks
(please read with the sarcasm that I am typing this in!)
10. You can have a glass of wine and fall in to a very deep sleep and not have to worry about not hearing your baby cry in the middle of the night. Thank goodness for night nurses
9. You can finish an entire meal without being interrupted by a screaming baby
8. No one disturbs you while you are trying to pee
7. Diapers are free (if you don’t count them towards your outrageous insurance deductible)
6. You have access to a “babysitter” every night of the week. Added bonus they are fully trained in CPR and advanced life support and they’re free
5. You have access to a Pediatrician 24/7. Don’t have to second guess a slight fever and rush to the ER for having a baby swaddled too tight
4. If you don’t want to change a stinky diaper, you also have a 24/7 diaper changer who is happy to do it
3. You can wear the same 5 outfits over an 11 week period and no one will judge you
2. There is always coffee made and someone else makes it
1. Stress coupled with not so delicious hospital food is a fabulous way to drop the baby weight!