Monthly Archives: May 2013

Lessons Learned

Besides the crash course in nursing, cardiology terminology, medical terminology, and overall medical information that I have learned through Carson’s journey he has taught me so so much more. I try really hard to look at the positive, and stay positive. I, like anyone else have my moments of weakness but these are just some of the amazing things I have learned through Carson’s journey:

To never judge: I hate to admit it but I used to be one of those people who would see a toddler walking around with a pacifier in their mouth and think “Geeze, those parents are lazy,” or “Don’t cha think he/she is getting a little big for that thing?” I always thought to myself that when I have children as soon as they are walking the paci goes. Well the truth is Carson looks like a normal one year old, walking around with a huge, ugly, hospital-type paci hanging out of his mouth. However, Carson is not a normal 1 year old. He is a 1 year old who has very few things that are huge comforts to him, his paci being one of them and I will not even consider taking it from him till he is done with surgery and healed.

Be careful what you wish for: We always want our babies to stay babies and so many moms have said “I want him to stay small forever.” I was one of those moms too. Cardiac kids have a hard time gaining weight and its a constant battle to make sure Carson is getting at least enough calories as he burns. That kid is always out of breath, and I am always trying to feed him. He is 17 months old and only weighs 19.5 pounds.

Never give up: This goes for anything in life. But especially for heart parents! We hit many bumps in the road, and most things don’t go as planned. I have learned to roll with the punches and just keep on going. 

Question things: A parents intuition is a strong tool. I have learned to always ask questions. I have a journal I keep with Carson’s information in it, and I write questions in it and take it to his appointments when needed. There never is a dumb question, and the more knowledge you have the more comfortable the situation becomes.

It’s okay to say no: as a parent we have the strongest voice for our children. It is okay to say no. When they tell me Carson needs a specific procedure done I always ask why. I want to know that it really is necessary and if I do not think it is I say no. While in the hospital I sometimes send people away because of the timing. Cardiac kids are hard to draw blood from, I have learned that I can say no, or I can tell them they can only try once.

Set a good example: sometimes I am grateful that my friends and family get to see me through this journey. Never once have any of them tried to tell me “you need to do this with him….” I always research things, and I always try to make the best decisions for Carson and our family. I have friends tell me about their family’s trying to tell them what to do with their children and I am so grateful that my family trusts everything I do with my son. 

Stand your ground: sometimes I have to tell friends and family they cannot come over. It has nothing to do with them and everything to do with my son. At first it was hard. I used to always want to get out of the house. Now I am okay with staying home as long as I know my son is ok. For the next few months we will be staying home, and limiting visitors. My son comes first, period.

Enjoy the little things: I have seen so many babies and children lose their lives to congenital heart defects. It breaks my heart every single time, and it hit home. It always reminds me how fragile my son’s life really is (as if I need a reminder). I always try to enjoy the little things and not rush. When we go grocery shopping I set him down, and hold his hand as we walk into the store. He veers off sometimes and goes to a bush to smell it, or touch its leaves. I let him, we smell the bushes together. I love to see his eyes light up as he explores new things.

You can never have too many pictures: do I even have to explain this?

Co-sleeping rocks: I don’t think there is anything better than being snuggled up to your heart baby as you both sleep. Getting to hear and feel their every breath and just knowing they are ok.

Make up your mind to do something, and do it! when I found out about Carson’s heart I knew things I had planned would change. I knew that I probably wouldnt get to delay his first bath, or have the direct skin-to-skin contact right after he was born. I knew that I was going to be at one hospital and he would be at another. His heart defect would take a lot of things away from me, and most of them were not in my control. However, the one thing that was in my control was breastfeeding. I knew that this journey was not going to take breastfeeding my baby away from me. I set my mind up to do it, no matter what and although it was hard sometimes, I did it and I still feel so accomplished today. He made it to 15 months breastfeeding before he self weaned.

Take things minute by minute, hour by hour, or day by day: sometimes things can be so overwhelming with Carson. I have to be on top of everything. Medication has to be given 5 times a day at specific times and somehow all of them have to be refilled at different times during the month. Sometimes Carson is more blue than normal, sometimes he is fussy and I have no idea why, sometimes things just happen and most of the time I have no control. I have learned to take things minute by minute, hour by hour, and day by day. I try to not get frustrated when he is throwing a fit for no reason, because there are heart moms who would give anything to have those moments with their babies again. Getting overwhelmed is so easy and on days where I feel like I am climbing a never ending mountain I just focus on the small task ahead instead of the big one and that is what I am trying to do today. 

I am so grateful for my son, I am so grateful that he is here, that he is a fighter, that he is hard headed, and that he is MY son and I am HIS mom. I know I will continue to learn and grow. I will continue to have moments of strength and weakness. I will continue to keep on keepin on and I will continue to love my son with every ounce of my being. 

I’m sick of being strong

Can I be weak, just for a moment?

This is the hardest thing I have ever done in my life.

If you haven’t heard on Facebook let me fill you in.

Carson went for his sedated echo on May 15th. He rocked it, and his heart function looks great. His cardiologist was waiting for his surgeon to get back from vacation to talk to her about surgery. She is back and I got the call today that he will have a cath before surgery and then surgery about a month or so after the cath. After I got off the phone with his cardiologist I got a call from the nurse practitioner who deals with caths. We scheduled a date: May 31st….

Thats NOT EVEN TWO WEEKS AWAY!!!!!!!!

Its a minor surgery.

Its scary.

and its one step closer to surgery, one step closer to me having to hand my baby over to the amazing hands of the surgical team.

I thought last time was hard….This time I have had an extra year to get even more attached to this amazing young boy my son is becoming.

How do I do this?

If they could just sign a paper guaranteeing me that he would make it through it would be a little easier.

I just feel like screaming.

I am a single mom now. I am pregnant (which was planned by the way). Although Nick helps out a lot we are not in a partnership anymore.

I have an amazing family, and an amazing support system but all of that doesnt fix my sons heart.

I wish he could be loved better. He has so much love, if he could it would be done by now.

I wish I could go through everything for him.

This is not the way things are supposed to be, Im not ready.

Please pray for him, pray for me, pray for the surgical team, just pray pray pray.

This surgery is a blessing. He wasnt supposed to have this surgery until age two or three because his cardiologist and surgeon didnt think his heart function would be this great this soon. This surgery means that Carson can walk to his Grammy’s house, which is next door by the way, without getting out of breath. This surgery means a better quality of life, a almost normal life. Its just getting through it.