This weekend we had so much fun! Janice and Don came from Illinois to visit us for a couple of weeks. (Don is only staying on the weekends and has to work in California during the week.) Kayden turned 4 and had a birthday party for all of his friends to come and swim in the kiddie pool and jump on the trampoline. The adults sat in the front yard under the cool maple tree and had a good time just catching up on what was happening in every one's lives. Tammy and Ben made yummy kabobs and afterwards we all indulged in creating and eating ice cream sundaes. These are my favorite kinds of birthday parties to attend: low maintenance and the kids still had a great time. Elisabeth gave Kayden a remote control backhoe and was so proud of picking out a toy just for him.
I do have to vent a little here... we brought Nathan along for the party since he has been doing so well from his open heart surgery. Since Nathan has a helmet to reshape his head from spending half of his life lying on his back in a hospital bed he tends to stick out a little bit. One of the moms at the party saw me feeding Nathan from his G-tube and saw how I had to "vent" his bubbles from his belly. Most people are a little taken back by this (I've decided the vast majority of the world isn't ready just yet to see that). She said that she had a niece who also had a g-tube. She then went on to tell me that the niece is in a vegetative state and began telling me all about her problems. I was so grateful listening to her that Nathan's problems are nothing in comparison to that. Then out of the blue she started comparing Nathan to this girl in which the only similarity they had was having to eat through a g-tube! I was flabbergasted! What floored me was when she asked, "Is Nathan ever going to be normal and talk and walk and eat through his mouth?" and when I said yes she followed up with, "How many more surgeries is he going to have before he's NORMAL?" I need everyone to know this: Nathan's future outlook is VERY GOOD. Yes, he's going to need his pulmonary valve replaced in the future and NO, we don't know when. Yes, he has a cleft palate and yes, he will need to have a couple of surgeries to fix that so he won't have food coming up his nose every time we try to give him something through his mouth. No, Nathan doesn't have any neurological problems other than having to deal with an overprotective Mother and a sister who "loves" him sometimes more than she should. No, he didn't have/or need brain surgery and yes, he is going to likely struggle a little with speech. Yes, SOMEDAY he won't have a button in his stomach and yes, Nathan likes some food. Yes, Nathan is only the size of a 4 month old baby and yes, he does have chubby cheeks and looks totally normal. Yes, he will always be followed VERY closely by a cardiologist but that doesn't mean he can't be the starting pitcher for the Boston Red Sox. No, he's likely not going to be a quarterback for BYU, but hey, baseball is the better sport anyway. But you know what? He's going to live just as normal of a life as his older sister. So I'm asking everyone to please think about what you're saying in regards to Nathan before you actually say it. Some of the things that have been said to me in ignorance have really started to bother me. Most of the time I just forget about it because they have no idea what I've been through and I usually don't want to give the hour explanation of what happened to Nathan these last 5 1/2 months. I know I should just brush it off, but this last encounter really, really hurt. Most of the people who read this blog aren't the problems, what I'm saying though is think before you speak even to strangers because you have no idea what they are dealing with.
I'm really excited that Janice, Brennan, & Nolan are here for a couple of weeks. It will be nice to be able to go and do a few fun things with Janice. Tomorrow we are going to see Dr. Sidiqqi (the plastic surgeon) for details on repairing Nathan's cleft. I'm hoping that we'll have some good information tomorrow about what the future plans are going to be.
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."