2 Months is a decent amount of time to ignore a blog. I usually try to work on it during a break at work or something, but my heart really hasn't been into blogging so it hasn't been a priority.
Hmm, it’s been several months since I’ve written anything and I apologize! Since I honestly cannot remember where I left off in the story, I’ll start back in August. Jake found out that he had an osteochondroma is his right femur. He had surgery on it to have it removed on September 30th and spent about 3 days in the hospital. He hobbled around on crutches for another 4 weeks and was unable to lift the kids or to even bare much weight on his leg. We were so grateful that after pathology examined the tumor it was determined to be benign. Nathan had a doctor’s appointment on October 13th with the general pediatric surgeon about his hernia that he has had in his esophagus for the last year. We were read the reports from his testing in August and the surgeon decided that the hernia had gotten so large that it was posing a substantial risk of tearing a hole in the esophagus. That appointment was on a Tuesday and Nathan was in surgery the following Monday which was 2 ½ weeks after Jake’s bone tumor surgery. I’ve never really complained much about our lives being thrown into such chaos these last 2 years, but I cried when the doctor told me that it had to be done to Nathan and that Jake would be zero help to me. Joey, I’m sure that you haven’t always thought of Janice as being the nicest of people, but she really came through for me. When she found out about my situation she called her mother in law to come watch her kids for 5 days and then bought a plane ticket to come home and help me. She stayed at the hospital with me one day and then played with Ellie at home and took on the role of Martha Stewart in deep cleaning and organizing my house from the chaos. Nathan was a little trooper and only had to stay in the ICU for 1 day and then another 3 days to be watched for the pain and breathing issues.
I wish that I could say that his hernia was the last of his surgical issues, but it’s not. A sedated echo was performed on Nathan during that surgery to view his heart. This was done because another sleep study was done on him in September and the report showed his severe obstructive sleep apnea worse than this time last year. The echo came back and said that Nathan is not getting enough air into his lungs and he has developed pulmonary hypertension. This means that the pressure of the flow of blood from the heart to lungs is too strong. This in turn has made his original heart defect, Tetralogy of Fallot, more serious. The right ventricle is already extremely enlarged and aged on these children. After the first open heart surgery the mechanics of the heart are changed such that the right ventricle will begin to get smaller and the muscles of the heart in that area will start to relax. The echo showed that ventricle to be getting bigger and that the tricuspid valve has a moderate leak and the mitral valve has a mild leak. These 2 valves were not included in the original heart defect. The only valve in Nathan’s heart that is functioning properly is the aortic valve. However, it is not even in the correct anatomical position in the heart. The pressures in his heart are so high that he is burning calories like crazy since the heart is working so hard to function. Nathan has achieved his all time high weight of 21 lbs 2 oz! The dietitian at Primary’s has increased the fat content in his food again to make up for all of the extra work that his body is doing. He is getting fed 40 oz of milk every day and getting 1500 calories. Each ounce of milk Nathan gets has 37.5 calories in it. To put that it perspective whole milk has 19 calories in every ounce you drink. I wish I could eat all the fat I wanted and not gain weight! We need to speak with cardiology to know for sure what this means as far as more heart surgeries and when, but the main problem is the obstruction of Nathan’s airway. Several doctors have voiced the opinion that Nathan should have a trachea placed in his throat to which Jake and I have said ABSOLUTELY NOT. We saw Nathan’s ENT (Dr. Park) on December 18th following a special MRI that views the airway. Nathan's tongue is still a significant problem in blocking his airway. We were given three surgical options and told to get back with Dr. Park by the first part of January.
1). Trachea (He would keep this in his throat for 8-10 years till he grows out of it) 2). Jaw surgery (Distractors and weeks back in the hospital followed by 8 weeks of wearing the distractors till the bone is strong enough) 3). Lip Tongue Adhesion(Sewing the tongue forward and down to his mouth so it is cannot move. This would limit speech and eating and would be for 5-10 years.)
We are leaning towards the jaw being distracted and brought forward again. Our ward will be having a fast for Nathan on January 3rd specifically that we can make the right decision for him and that he will be able to endure the decision and be ok. It was hard when he was a baby, but we just can’t deal with that again. I cringe at the thought.
Even with all of that, Nathan is the sweetest little boy. He loves to play cars, to be read to, and to be cuddled with his BYU blanket in tote. He is very smart with a language comprehension of a 2 ½ year old. I know that really isn’t that far ahead of his age, but after spending so much time in the hospital and recovering from surgeries that it huge for him. He is signing on a consistent basis 17 -18 signs. He has had a few temper tantrums, but being able to communicate with us has helped a great deal. He is even starting to take small sips of water and his milk from a sippy cup. He hasn’t been able to drink more than an ounce over a half an hour or so, but it is progress. He has finally developed separation anxiety and boy does he have it bad! I can’t even walk up to the podium in Sacrament meeting to conduct the music without him screaming and crying at the top of his lungs. I feel grateful though for those screams because another one of our heart buddies lost his battle the day after Thanksgiving. His mother wrote on her blog:
As Dallin H. Oaks said, "When we give thanks in all things, we see hardships and adversities in the context of the purpose of life. We are sent here to be tested. There must be opposition in all things. We are meant to learn and grow through that opposition, through meeting our challenges, and through teaching others to do the same."
I love the strong advice that Dallin H. Oaks offers. He states that "we should thank God for our adversities and pray for guidance in meeting them. Through that attitude and through our faith and obedience, we will realize the promises God has given us. It is all part of the plan." He also reminds us that "God offers us opportunities for blessings and blesses us through our own adversities and the adversities of others, we can understand why He has commanded us again and again to “thank the Lord thy God in all things” (D&C 59:7).
I haven’t yet figured out why so many babies similar to Nathan have far more serious developmental delays or diagnosed syndromes that are manifested in Nathan and yet are not conclusive as to why he doesn’t have more profound problems. I don’t understand why some babies like him are allowed to live only a short time with their parents and why he is still with us. He is doing so well that people who don’t know him have no idea what is going on inside his body because he is such a happy adjusted toddler. He will have serious speech and feeding issues, but if he can take it in stride, so can we as his parents. I’ve learned that we can do our best as his earthly parents but ultimately it falls to our Heavenly Father to meet his needs if we but will just ask.
Ellie is still being herself. She decided she didn’t need to wait until she could go to school to learn to cut hair and took a pair of scissors to Nathan and cut down to the scalp. He’s such a happy kid that he just let her. I cried and realized that children have two parents to care for them in case one has a nervous breakdown! Ellie told me she wanted her hair cut and so Amy did a great job and gave her a cute little A-line bob. I’ve had MANY compliments of how great it looks on her. Plus, Amy has convinced her that only Amy gets to cut hair and not Ellie. Ellie spends the majority of her days running circles around the babysitter and pestering her little brother. We’re grateful for preschool so that for 6 hours a week she is getting that extra help in putting her attention where it should be.
We’ve started a new Christmas tradition this year. We bought the book “The Elf on the Shelf”. It comes with an elf, but the elf stays at the house during the day to watch the kids and then goes to Santa at night to report. Every night the elf comes back to the house but in a different spot. It’s been fun for Ellie to go and find the elf. The elf also leaves elf “poop” of white marshmallows behind when she has done something well. We are having a good time with it and are anxious for Santa to come. Hopefully he will bring tickets to Disneyland that Ellie is desperately asking for .
After Christmas we are going to my brother’s house in California. We have been working on genealogy and have discovered that my dad and his brothers and sisters have been sealed to their dad’s second wife and not their birth mother. Not much is known about my Grandma Larson since she was adopted and died in childbirth in her early 30’s. When we go to California we will be going to the temple with Bill and his wife to seal my dad to his mom. It will be fun to do temple work that hits so close to home.
As for myself, I just plug away at work and do my best to be a mom to Ellie and Nathan. Oddly enough in all of this stress Jake and I have found that our relationship is stronger than ever before. I have been working really hard to lose weight and am starting to see some good results. Liz Rosenbaum has become a personal trainer and so I have been going to her 2x a week to work on weight training. My work offers a program if an individual’s BMI is over a certain point that they are given $100 a month to use on a gym membership, trainer, or whatever to help them lose weight. I’ve been working out in our clubhouse with 3 of my friends in the ward at 5:00 a.m. and also doing my best to eat right. It hasn’t been easy, but I’m down 50 pounds since my jaw surgery in March. Like I said to Amy when I got Ellie’s hair cut, I hate the diet and exercise is the right answer! Even though I’m getting up so early, I have loved having an association with friends and I feel really good. I should have started this right after Nathan was born and not waiting until last July to get started.
I hope that everyone had a good Thanksgiving and that Christmas will be a happy time for everyone.
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."