This morning I woke up at 4:30 a.m. to get ready to take Nathan to Primary Children's Medical Center to have Dr. Park perform another cleft palate surgery. There was a lot of thought put into Nathan having this operation. All of the doctors in in the craniofacial team said that Nathan needed it done. Not one of them could agree on the timing. Up to this point in Nathan's surgical history, the choice of when was never given. Its always been he needs this and he needs it now! The concern with this operation is that with all of the work we have put into giving Nathan an optimal airway, this could have set us back. Nathan has such a small mouth and jaw in comparison to what he should have. The flap that exists in everyone to close off their nose when they speak is missing in Nathan. He needs that flap! However, he is not and probably never would be a candidate for the operation to help him. So, we improvised... and had to beg Dr. Park to do this for him. Typically children like Nathan do not have this operation until they are 6 or 7. But Nathan is not a typical little boy. He's had several nasal endoscopies this year and did not cry or figit when the camera was stuck down his nose. He is a mature little boy with a lot to say and yet everyone has such a difficult time understanding him. This operation should help immensely. Even more than that - we want to be done for quite some time before Nathan needs anymore operations in his mouth. We are desperate for him to eat through his mouth. We have the potential to be done for a few years till his next open heart surgery. This break could make a significant difference to Nathan!
The surgery is done and it went well. The only issue Nathan is having is that when he falls asleep his airway compresses and his oxygen levels dip down to the requirement of needing oxygen. His poor mouth is swollen and he is having a difficult time speaking. But he is in good spirits. He will be staying overnight for observation and Jake is going to stay here with him. This is going to be the start of good things to come!
I took Nathan to his preschool open house during lunch today. He was so excited to see his teacher at Cherry Creek again. We adore Mrs. Foster and Natalie, her technician. Natalie has been WONDERFUL with Nathan and he loves her so much! I'm excited for the progress that I think will happen at school this year for Nathan. He's having a cleft palate surgery on Thursday. We are a little nervous, but happy to be doing something more for his speech. You wouldn't think that a cleft palate surgery would be a big deal, especially when compared to open heart surgery. I remember Nathan coding in the Intensive Care Unit after his tonsilectomy. This surgery has the potential to go really right or really wrong.
But the big push forward really came this afternoon. I sent the necessary documentation to "Our Children's House" in Dallas, TX to request Nathan be seen in a more intensive feeding clinic there. They are comparable to Primary Children's, but offer a more comprehensive feeding therapy. If Nathan is accepted for an evaluation and is seen as a patient whom can be helped, I will be taking off 1-2 months of my life to take Nathan to Texas to teach him how to eat. We have also looked into the Hershey Penn State program.
I'm feeling scared - mostly for the what-ifs. I want Nathan to succeed so badly and we have been at this for 4 1/2 years. This is new territory even for us; and a costly one. Our insurance will likely not pay - but Nathan is in desperate need for this care. We'll know in a few days a little more information.
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."