Yesterday morning I checked the website for the IHH website for an update as to Nathan's heart friends. We have gotten to know several of these families and the struggles that they are going through. Like I was telling Jake's mom, its nice to be able to talk with people who really understand what you're going through. For example, I was able to talk to a couple of different mom's about what it felt like for them to hand their babies over to Dr. Hawkins knowing that a heart/lung bypass machine was keeping their baby alive while their child's heart was intentionally stopped to be repaired. The understanding, love, and empathy shared by this group with all of its members is almost like the love shared by immediate family members. One family in particular, the Brimley's, have had an especially difficult trial. Their son, Isaac, was born in January a few weeks before Nathan. He was born with the the congenital heart defect of HLHS, which basically means he was born with only half a heart. His parents extended themselves to EVERYONE in the group with warm welcoming hugs and visits to others in the hospital. While Nathan was in the PICU after his open heart surgery, Isaac was in the room next to him in the quiet corner where the heart kids are kept. Jessica and Paul made a special point to come and visit Nathan and talk with us. They made us feel so important and loved, even when their child was fighting for his life. Isaac was able to go home for 9 days and then he was brought back to the PICU for increased problems. On Saturday night he returned home to our Father in Heaven.
I can't imagine what they must be feeling. Its hard to understand why some children with CHD's are allowed to stay and others are taken home so quickly. I held Nathan most of the day yesterday and had a hard time leaving him to go to work this morning. I also spent some time last night laying awake and wondering what my mom must have felt when Beth passed away. The reality of how fragile life really is hit home quite hard last night. Our thoughts and prayers are with the Brimley's as they go through the grieving process. Isaac was a fighter and will surely be missed by all who loved and knew him.
1 in every 120 babies are born with a heart defect. What if that ONE was YOURS?
Our Little Man
We unknowingly became elite members of a world no one wants to be a part of on January 22, 2008 with the birth of our little boy, Nathan, but looking back we can't imagine life any differently. Nathan has had to endure 21 surgeries in the first 25 months of his life including open heart surgery for Tetralogy of Fallot, jaw surgery at 3 days old, 5 cleft surgeries and many surgeries involving his airway, ears, and eyes. He has a g-tube which he uses as his sole source of nutrition. In February 2010 he underwent a second jaw distraction as he was showing signs of right heart failure.
Nathan is our little hero; our witness that prayers are answered individually and that we couldn't be blessed with better family and friends to support us.
One day my world came crashing down, I'll never be the same. They told me that my baby was sick. I thought, "Am I to blame"? I don't think I can handle this. I am really not that strong. It seemed my heart was breaking. I have loved him for so long. I will not give up on this child. I will listen to your advice. I will give my son any chance. No matter what the price. I will learn all that I need To help my baby thrive. I'll even use that feeding tube. My child must survive! Will he need a lot of therapy? Will he gain the needed weight? Please God, help me do this. As I accept our fate. When the monitors beep at night, it serves as my reminder. How many parents would love that sound. Tomorrow I will be kinder. As another Angel earns his wings, I run to my baby's bed. I watch him sleep for quite a while. I bend down and kiss his head. I cry for the parents whose hearts have been broken. I look to You wondering why? Oh Lord, I just can't know your ways.... no matter how I try. And yet, I trust you hold his life, and guide us through each day. My mind says savor each moment he's here, but my heart begs, "PLEASE let him stay"! From pacing the surgical waiting room, to sitting by his bed. From wishing for a good nights sleep, to learning every med. From wondering, "Will he be alright?", to watching him reach out his hands. With every smile my heart just melts, despite life's harsh demands. For all who see that faded line. I look to them and smile. You see my child is loved so much. I would face ANY trial. That scar I trace with my finger (It's the door to his beautiful heart). God must have known how much I'd love him (Just as He loved him from the start). A heart mom is always a heart mom. Now wise beyond her years. For those who have angels in heaven, Our hearts share in all of your tears. Every day I will try and remember, I was chosen for him (and no other). I will always embrace that beautiful day....... When I became a "Heart Mother".
~Stephanie HustedMommy to Braeden HLHS post FontanCarepage name: babyhusted
I "borrowed" this poem off of another blog. I'm not sure who the author is, but it truly touched my heart.(Original version found at http://garyandcamille.blogspot.com Thank you!) Heart Poem:
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday. And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."