Heart Moms Unite!

When I got off work on Friday I was determined to do something I had been putting off for about a month. After our first meeting with Roxanne she connected me with a heart mom in Texas who has a six year old with Landon's diagnosis. I had been wanting to call her, but just never knew when a good time would be. I didn't want to interrupt her day and it is quite odd calling someone across the country, whom you've never met, to talk about personal issues. That night I was determined though so I called before I did anything else. She answered and I explained who I was and asked when a good time to talk would be. She told me that actually right now was perfect.

She asked me how I was doing and I told her that we're doing good, that's it's getting easier the more we find out and learn about everything. I could tell right away that she wasn't convinced and I realized that this is one person who truly understands and I can be completely honest with. I began to open up to her. She told me that the hardest times for her were when she was pregnant because once her son was born she had something to focus on. We shared our feelings of helplessness. She told me about their story. Her and her husband had been married five years when they found out at their first child's ultra sound that he had HRH/PA + IVS. She was very surprised that Landon is HRH (hypo plastic right heart) because this is so rare. She told me that it is very hard to find people with the same diagnosis as her son. She had to look out of her state, which is what I had to do also. We shared about how we both longed for information about our child's condition, but how scarce it is on the internet and anywhere to find.

Then I began asking questions, they just flowed. I wanted to know about her son, I wanted to know about his delivery, his surgeries, bringing him home, how he is doing now. I learned SO much from what she told me. Some things brought such encouragement and hope and others confirmed some of my fears. She told me that her son is now six years old, he has completed his three surgeries and from looking at him you would never be able to tell that he has a heart defect. He is active, plays soccer, and enjoys doing what every other six year old boy does. She told me all this and then added, but he isn't normal Natalie. You've got to understand that although his surgeries are done, he will always have HRH/ PA+IVS. It isn't something that can just be fixed, it is a part of who he is and will be who Landon is as well. She told me that although he plays soccer and is active, he can only run for short amounts of time. She said just like any child with special needs, like asthma or something, he must be carefully watched. When he overexerts himself his skin begins to turn a bluish color. This was very sad for me to hear because running is such a passion of mine. Knowing Landon will never be able to experience long distance running was disheartening.

We talked about our feelings of aloneness and how inconsiderate others can be with what they say. We agreed that others just try to relate to what we are going through, but they can't. We shared stories about hurtful things that have been said to us. It was so healing to be able to talk to someone about this and realize that I'm not silly for feeling hurt. She told me that people were quick to tell her how much doctors can do now days, she told me she would reply, yes, but they can't give my son a new heart. I was impressed by her heartfelt honesty. I have gotten to the point where I just agree with what others say and give the impression that I am fine because it is so much easier then people trying to make me feel better or knowing that I make them feel awkward because they don't know what to say to me. Seeing how she didn't stop sharing her true feelings with those around her made me realize that I often dismiss my feelings because I don't think anyone really wants to know or could possibly understand.

We shared in our feelings about our marriages and how they have been effected. She was shocked when I told her that Landon was our surprise, that me and Ryan just got married in June and found out we were expecting in August. She just sighed and said "oh hon, that's a lot." Her understanding brought much needed healing to my heart. She truly does know just how much we have gone through... so quickly. She shared about how hard it was on their marriage because they handled it so differently. She needed to talk about it and cry, but her husband didn't. She said he handled it "like a guy, and she handled it like a girl." I could really relate with that.

She told me that one of the most important things that I must do is grieve. She said I have to grieve the loss of normal, that it's ok to do that. It's ok to cry, be angry or depressed. I have to allow myself to go through the crazy emotions that rise up in me because I did lose something. She said there will continue to be disappointments to grieve. Life will not be like I imagined, but I will find that that's ok. Grieving is a process and I have to go through it so that I can embrace the life that lies ahead of me. I took this to heart.

We talked about her delivery and their time in the NICU. She told me that although my doctors will probably plan to induce me, like hers did, she advised me not to. She said that right now the MOST important thing for Landon is weight gain so it is crucial that he stay in me for as long as possible and gain as much as he can. Her son weighed 8 Ibs when he was born. She told me he was the biggest baby in the NICU, but he lost a whole pound the first week. It is very hard for babies with heart defects to gain weight once they are born. I asked her about breastfeeding because this is something I think is really important. She told me that this was also extremely important to her. She said that once her son was born they took him away and she wasn't able to hold him until days later. Hearing this broke my heart, that has been one of my biggest fears that they will just take Landon away from us right away. She told me it was devastating, but she just began to focus all of her efforts into pumping milk for him. She told me she thinks it was critical to his success that he received that nutrition and to her recovery that she had something to focus on. Another thing she warned me about that made me very sad was, she told me, that if delivery ends up being difficult in any way, meaning he is having a hard time coming out, they will do a C section. They will not want ANY extra stress on Landon's heart so if they see ANY warning signs they will do a C-section, they just will. This made me very sad because that is one thing that I really don't want to happen. I have been told that I can deliver vaginally, but what she said make sense, and happened in her case. She told me to prepare emotionally for the delivery. She said it took her a long time to get over her sadness about it not being what she imagined.

I asked her what it was like bringing her son home. She told me that he was only in the NICU for a week after his first surgery and they were able to leave the hospital with no equipment hooked up to him. She told me for that you have to be extremely careful with babies with hearts like Landon's because their immune systems are so fragile. They kept their son in what she called "lockdown" until his second surgery was completed at six months. They didn't introduce him to hardly any new people because of the likelihood of him catching something. She said after he recovered from his second surgery they threw a big party.

I asked if she has any other children and she joyfully told me that she has another son who is 8 months old. He has no heart defect. She told me she is just amazed at how easy he is. He is strong and healthy. They waited 5 years to have another child, partly because they wanted to focus all of their focus and attention on their first son and partly out of fear. She said something that I thought was really profound. She told me she had to reach the place where she felt they were strong enough to have another child with a heart defect before they started trying. She said that by the time they had their second child she would of been ok if they got that news again because, yes, it was hard, but they have seen the outcome. She told me that her son is so special and his experiences have made him who he is.

We ended our long conversation with agreements to keep in touch and share blogs with one another. I hung up the phone feeling so encouraged. I feel blessed to be a part of this strong group of woman around the world who call themselves heart moms. We don't need lengthy introductions because our hearts are already connected. It was healing for me to talk to someone who understands the fear and pain. I can only look and imagine the future, but she can look back. Look back over years of hard times and joyous times, she can recall the feelings and offer the wisdom she gained through it all. This is such a beautiful thing.

I want to share this poem that was written by a heart mom.

I could quote terminology
There's stats that I could give
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix, aspirin, Captopril
It's wondering... Lord, what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks
It's feeding tubes, calories, needed weight gain
It's the drama of eating ~ and yes, it's insane!

It's the first time I held him (I'd waited so long)
It's knowing that I need to help him grow strong
It's making a hospital home for awhile
It's seeing my reward in every smile.

It's checking his stats as the feeding pump's beeping
It's knowing that there is just no time for sleeping
It's cats, x-rays, and boo boos to kiss
It's normalcy that sometimes I miss
It's asking, "Do his nails look blue?"
It's cringing inside at what he's been through.

It's dozens of calls to his pediatrician
(She knows me by name. I'm a mom on a mission)
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser
It's watching him sleeping ~ his breathing is steady
It's surgery day and I'll never be ready.

It's handing him over (I'm still not prepared)
It's knowing that his heart must be repaired
It's waiting for news on that long stressful day
It's praying, it's hoping that he'll be okay.

It's the wonderful friends with whom I've connected
It's the bond that we share, it was so unexpected
It's that long faded scar down my child's small chest
It's touching it gently and knowing we're blessed
It's watching him chasing a small butterfly
It's the moment I realized I've stopped asking, "Why?"
It's snowflakes that fall on a cold winter's day
(They remind me of those who aren't with us today)
It's a brave little boy who loved Thomas the Train
Or a special heart bear or a frog in the rain
It's the need to remember we are all in this plight
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow
It's finding the strength to have hope for tomorrow.

And no we'll never be the same
It's changed our family
this is what we face each day
This is a CHD

~Stephanie Husted, Heart Mom
Linda T Young, Hope for Families of Children with Congenital Heart Defects (Kindred Press, 2010)