In my way of trying to keep up with the kids and the things they do and say I have to post this about Nathan: He fired Jake as his dad, which is actually kind of funny since Nathan loves Jake fiercely!
I had gone visiting teaching one evening last week during Nathan's regular g-tube feeding. Jake, bless his heart, was trying to take care Emmaline and Ellie's dinners as well as keeping the house under control. He had fed the kids at the table (which Nathan worked on his eating too at the table) but Jake completely forgot to tube feed Nathan. After I came home we all sat down on the couch together to watch "Anerica's Got Talent". At 8:30 we told the kids it was time for bed. Nathan exclaimed, "But I'm HUNGRY!" At first I didn't believe him, but then the mom in me started to wonder... was he fed? Sure enough when I asked Jake about it he sheepishly admitted that he had forgotten. Nathan was standing right next to me and exclaimed "Dad, You're Fired!" Silly boy. As soon as Jake fed him the next time he became "unfired".
As a mother, I love watching the interaction between Jake and Nathan. Its fun to see them play together and to have such a good relationship. I love to see how Jake is teaching Nathan to treat his sisters and I with respect. I love to see them get excited about football together. I love that Jake sees Nathan beyond his inabilities. I worried that Jake would feel hurt that his only little boy wouldn't be able to do the things like playing football that Jake would want him to. I should feel stupid for worrying about that because Jake has never thought of Nathan in that way at all. Jake really is the perfect Dad for Nathan.
Lately Nathan has been doing much better on his eating skills. This is of course all relative to where he started. Much better is generally taking 4-5 bites of food and swallowing about half of what goes in his mouth. He has finally figured out this summer that eating is as much social as it is for nutrition.
This weekend was an exceptional weekend for Nathan in regards to eating. It actually started last weekend when I gave him a cup of yoplait yogurt and told him if he ate the whole thing he could choose the movie to watch as a family. It wasn't perfect, but in the time it took our family to eat dinner, Nathan had tried to eat the whole yogurt. He was so excited to be able to choose the movie!
This weekend Ellie had a soccer game on Saturday morning. She had done very well at her first go at being the goalie so as a reward, we took the kids to get a snow cone. Nathan absolutely loves the tiger's blood flavor so Jake bought him a child sized cone (of the soft shaved ice) and Nathan ate about a cup worth.
On Sunday evening we made pumpkin chocolate chip cookies. Now if there is one food that Nathan will eat consistently its chocolate! The heavenly smell of the fresh baked cookies were too much for him so he took a cookie and worked on eating it while we watched "Secretariate" as a family. Nathan was an ooey-gooey mess at the end of it, but he had managed to eat one small cookie and LOVED IT! He came over to me to show me the evidence (which was quite noticeable since it was all over his face and hands). When I asked him how much he ate, he rolled his eyes and me and said "Too Much!"
Too much Buddy? At 31 pounds and 38 inches you are the only one in our family who can afford to pile it in!
We are so excited for Nathan's progress in eating. Baby steps... that's what this process is.
We are looking into sending Nathan to Baylor for an intensive feeding clinic for which the child would be hospitalized for aprox 4-8 weeks. That would be a huge sacrifice for our family, but we want Nathan to be able to get rid of his feeding tube. It may take a couple of years, but we have to try and encourage him the best we can. We have one more year until Nathan reaches Kindergarten and we want his peers to accept him as normal. Sigh. Sometimes this whole process is frustrating! But we will get there and everything will be ok.
I can’t believe it’s been a year since I’ve written on this blog. Sure, I have semi-regularly stalked other people’s blogs, but in typical Stephanie style I have neglected my own. And unfortunately, it was my journal. I am determined to not necessarily play catch up, but I do want to keep up!
Today was the first day of school for Elisabeth as a 2nd Grader. She has been growing up so fast and the things that she says and does just floor me sometimes. She is a Tomboy at heart but she does love her American Girl dolls and to get dressed up in skirts and dresses. I find it funny that since starting school, she has always worn a dress/skirt on the first day of school.
This year for school she wanted her hair all curled up. I’m not the kind of person who has patience for that kind of stuff, but since it was her first day of school and she wanted to make a good impression, I happily obliged. Last night she got in the shower and then after I rolled her hair up in sponge curlers. She looked very cute this morning. Jake had a good chuckle last night with Ellie in her nightgown and her hair all rolled up in curlers like a 60 year old woman. Ah, the things we do for beauty!
I have high hopes for the good things to come in school this year. She’s not in the same class as her other friends Brynley and Mia, but I think that will be to Ellie’s benefit. Ellie’s teacher is Mrs. Christensen who is a brand new teacher at Reagan Academy this year, though it is her fifth year teaching. Ellie was very calm and excited to start school again!
And as an insight into Ellie, this is a quote from last February:
Ellie on Nathan getting to go Salt Lake today: “Nathan, you get to go to the upper case of Utah!....I mean capital....”
First Day of Kindergarten:
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."