The sad thing is that the picture of Nathan tells a little too much about how he knew this was his 4th sleep study! Its the "I can't believe you are putting me through this again!" putout look! He was such a trooper getting the probes on. He didn't fight it or anything. He just sat and played with Woody from Toy Story and watched "Cars".
Last night I took Nathan up to Primary Children's for hopefully our last sleep study in a while. This study was to check the status of his severe obstructive sleep apnea post mandibular distraction.
I hate that they call it "sleep study". Neither one of us slept great... but the good news is that Nathan did not need oxygen at all last night! That is such a big step forward for this little guy. They said his oxygen sats were around 88-90 which is awesome for Nathan at night! If a child drops below 85 then they are required to put oxygen on him. I hope that this is an indication of good things to come as we won't find out the results of the study for another 2-3 weeks. I have an appointment with Dr. Park on August 25th to discuss the results if we don't recieve a phone call from him before then.
Wish us luck that the jaw problem is over with for a while! With the jaw problems out of the way it would do a world of wonder for his heart and particularly his pulmonary hypertension.
The day after Jake came to Chicago, we decided to go see the Museum of Science and Industry. We thought the science museum in Seattle was awesome; this place made the one in Seattle look like it was put together by amateurs. Jake, the textbook version of what a science teacher should be, was in seventh heaven!
There were so many things to do and see in this place. My favorites were the sections on the human body and the weather which included the transfer of energy. The human body section should what the body parts looked like without the skin and muscles. It also had a human heart that had been donated. There was a section that showed the growth of babies in the mother's womb. All of the babies had passed away at different gestational ages and had been preserved for people to see what forms at what stage during a pregnancy. It was very interesting to see.
My other favorite part was the wing specializing in weather. They had a movie on how lightening is created and then had a demonstration on the ceiling above us. Ellie and Nathan LOVED it. We could have spent days at that place. We visited this place on the first Thursday we were there and had previously decided that we would go to Hannibal and Nauvoo on the weekend. If we ever got to go to Chicago again, I would make that the top priority of places to see.
On some level it does. I should do better, but oh well.
For work I had to spend 2 weeks in June auditing companies in Chicago. Jake and I figured that he would not enjoy taking care of the kids for 2 weeks by himself so we opted to make this our "family vacation" for the year. We couldn't afford to fly, so yes... Kathleen (Jake's sister) and I braved the roads and the kids for a 2 1/2 day drive I hope not to repeat for quite some time. The kids were actually very good travelers, but 2 days in a car can be LONG. Jake's sister came out with us to help tend the kids because Jake's work decided that he would have to attend a work retreat for the first few days I was supposed to spend working in Chicago.
Before Jake flew out from Utah to join us, Kath and I decided we had to do a few fun things that Jake wouldn't want to do. The main event was the American Girls Doll Place. Wow! The dolls were incredible! I never had one when I was a girl, but I wish that I had. I bought Ellie the friend of Kit Kitredge (Ruthie) I believe. She has loved that doll and taken exceptional care of her since bringing her home. The store also had a doll salon, a doll hospital, and room for tea parties. It was AMAZING! Ellie has named her doll Emma Lynn Ellinger so it would be the same initials as her.
After the American Girl store we hopped on a bus and visited the Adler Planetarium. It is located right on the shore to the lake. It had such a fun children's area to play in and the kids had a great time. Who knows? Maybe someday one of them will be an astronaut or fly to the moon!
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."