Every so often you hear of a person who has overcome tremendous odds in order to succeed. The journey was long and at times very lonely, and yet with the goal in sight they persevered forward. My niece, Erin, is one them.
Erin was born to an unwed teenage mother. She was loved dearly by her maternal grandmother and adopted Grandma "Net". Through a series of choices made by her mother she ended up with 3 others siblings and mother who dealt with 2 difficult marriages. Her mother succumb to drugs, depression and isolation forcing everyone out of her life. Erin's stepfather moved from job to job due to drug addictions. The addictions of her parents led them to become in trouble with the law due to theft, fraud, concealed weapons violations, and heavier drug charges. Erin as a young child became the mother to her brothers and sister. She cooked the meals, helped try to clean the home, sent her siblings to school and did her best to make sure that she was in school. She carried a heavy, silent burden and seldom talked about her family whenever she was even allowed to come to family functions.
I'm ashamed to say that my family knew what was going on but due to the way my sister had treated everyone, no one wanted to step in and help. I think each one of us will have to answer for that someday.
Things came to a sudden turning point 2 years ago this month. My mother was dying and in a hospital in Salt Lake City. My life was busy; I was working full time and trying to care for a terminally ill parent. Jake was trying desperately to complete his last class to graduate with his bachelor's degree and between the two of us, we were doing our best as young parents to care for our 2 year old daughter. I had just found out I was pregnant and with that came the mixed emotions of knowing I was going to loose my mother and would be having a child that she would never know.
A couple of weeks before Mom passed away I received a phone call from the police at work saying that my sister and her husband had both been arrested and that I needed to go quickly and pick up their kids. I went to find 4 frightened children sitting in the living room with the police as their parents were handcuffed and shackled on the couch. I quickly grabbed some clothes for the kids and took them to my house. I had just became a "parent" to 4 kids who had needs bigger than I knew how to deal with. I was not mature enough to care for those kids.
It was with a heavy heart that Jake and I made the decision to place the kids in foster care. It was really the best choice for everyone, but the looks on the kids faces as I left them were indescribable. Erin, especially, had a hard time dealing with everything that had just happened to her family. She had tried so hard to keep them together and yet nothing was ever going to be the same.
For a long time I used to blame myself for Nathan's health problems. Was in my fault? Did I eat something wrong? Was it because I was caring for my mother who had a deadly strain of bacteria? No, it was the Lord's plan. I have had no regrets since Nathan was born that we placed those children in foster care. We couldn't have cared for them in the way they needed and Nathan at the same time. They were placed with the best foster parents, Doug & Jane and another mother, Carolyn. What a tremendous impact these adults have had on these children. They have been loved and well cared for. The foster care system truly worked for these children.
Jake and I have kept in contact with Erin and have seen the kids several times in the last two years. Erin's parents have been in and out of jail several times. Even on graduation day, Erin's mother was currently serving more time in jail.
Erin graduated with honors from high school yesterday afternoon. She has learned to love our Heavenly Father and lean on Him for guidance. She is slowly learning that she has worth as a young woman and that if she works hard she can achieve her goals. Graduating from high school is just the first in many great achievements that she is going to make. Statistically Erin should have followed in her mother's choices and been involved in drugs or becoming a young teenage mother. She set her mind on a goal and even though she struggled emotionally these last 2 years she made it! Erin has been accepted to Brigham Young University and will be attending college there.
Jake & I are extremely proud of Erin. What a privelege it is to be her aunt and uncle.
Yesterday I took Nathan to see Dr. Siddiqi who performed Nathan's 5 (yes 5!) cleft surgeries. Nathan's mouth is healing very nicely from his final repair and we will need to follow up with Dr. Siddiqi only once this fall in the craniofacial clinic and then on a YEARLY basis after that to watch for Nathan's speech development. That's 3 doctors in the last month and a half that have said see you in a year! I can't even tell you what that means to me for taking off of work and that it shows Nathan is making huge progress!
Now we're just waiting patiently for Nathan's next surgery in June...
That's Ellie's method of going to bed. Notice Sally the blue dog and Cassi her doll with her. Those two accompany her to bed every night. So why did we buy her a bed when a $20.00 bean bag is her choice of places to crash?
...at least that's what he should be called because he's running out of body parts to operate on!
Once again on June 29th, Nathan's going to be back in the PICU at Primary Children's looking like this:
(small side note here: that blue thread coming out his mouth was sewn in through his tongue to hold it down and not block Nathan's airway while he mouth was so swollen on the inside. It seriously creeped me out to know that the doctor had stuck a needle through Nathan's tongue.)
Only this time it won't be on his cleft, he will be having his tonsils out, having his adenoids shaved down somewhat, and then a camera stuck down through his cranial openings to have a good look at why Nathan still is having serious airway obstruction. Jake and I have opted to go this route first. If this doesn't work, Nathan may need his tongue advanced in his mouth.
*Patsy, I know we originally told you it was going to be July 14th. However, I got home and realized that our insurance plan year starts over again on July 1st. Since we already maxed out our insurance this year, we won't have to pay for that operation. We'd pay out the nose for it first thing in July. The doctor's office told us that was the earliest time to do it since it will only be 7 weeks out from Nathan having his cleft surgery.
Yesterday I had to take Nathan up to see Dr. Siddiqi and Dr. Park for a look at his cleft and his airway. Since the appointment was at 9:00 a.m., I told Elisabeth that if she worked hard at completing her chores this week that we would go to the Children's Museum. That was enough motivation for her and her chores have been done all week! What a difference that has made to how our house looks!
Patsy, Jake's Mom, was so good to come with me and the kids. She brought Elisabeth up to Salt Lake so I wouldn't have to take her to the doctor's offices. Its nice having a grandma so close that likes to do fun things with us. Both of the kids adore her!
We had a good time playing in the house, pretending to be fire fighters, making a butterfly sun-catcher, touching a frog, drawing, building towers out of blocks to outlast an earthquake, and just enjoying my kids. Sometimes I think I get so busy taking care of Ellie's & Nathan's physical needs, that I don't help development their emotional needs as well. I really do enjoy just sitting and watching them play.
I decided that since we are up at Primary's at least twice a month still, that I would buy a year pass to the Discovery Gateway. It will be a nice treat to look forward to on the days that we have to go up and sit and wait for doctors. Plus I think that it will be nice for Jake to have something to do with the kids this summer.
Nathan's nurse came to our house last night to check on him and get a weight, height, and head circumference on him. Here's where's he at:
Weight: 17 lbs. 4 oz. (considering a month ago after having the flu he was down to 16 lbs 4 oz this is great!) However, that puts us way in the outer range of not being anywhere close to a "chart". In fact, the nurse joked that Nathan is in "total outer darkness" territory. That's Nathan though and if I'd been through what he has, I'd be struggling too. We'd like to see him at 18 1/2 pounds by the end of July.
Height: 30 inches (10th percentile)
Head: 46.1 centimeters (25th percentile) His head is the only thing that has grown on a consistent basis since he was born. I'm glad to see that because its also showing normal brain growth.
Nathan's favorites: tubtime (particularly splashing with his sister), being held by mom, dogs (he can't talk but he can mimic a "woof" sound), and following his sister around, and babies.
Nathan's dislikes: being weighed, seeing a doctor, going to a stranger, sitting on grass, or being put in the sandbox. You'd think a little boy would love grass and sand, but hopefully that will come.
Ok, so I haven't been very good at updating since Nathan left the hospital. He was able to come home on Sunday, May 3 after only 2 days in the hospital. That has to be a record for him! I think though that the doctors have a better feeling for Nathan and also that they understand that Jake and I are capable of taking care of him and his equipment at home just as well as the nurses would at the hospital.
While Nathan was able to come home faster, he also has grown very leery of everyone around him except for Mom and Dad. Even then, sometimes Dad isn't good enough. He's been VERY clingy this week. I can't blame him. I think this is an age appropriate thing too as Nathan is old enough developmentally to start to become aware of strangers. Ellie didn't really go through this phase very long, but if I remember right Kristin's girls were that way for about 9 months. Correct me if I'm wrong Kris.
Nathan still isn't walking with his 16 month mark coming up on the 22nd. We were warned by his physical therapist that Nathan will be closer to 18 - 19 months before that happens. He'll walk with a push toy, but doesn't have the balance or stamina to do it on his own yet. He can, however, now crawl down the stairs by himself when he really wants something. He's making progress and even though its little by little, he's still coming along!
I had a nice Mother's Day with Jake giving me a Willow Tree figurine and an outside rocker from Cracker Barrel. I'm excited to use it for watching Ellie ride her bike or scooter in our driveway. The primary children made a card to their mom's where each of the kids were asked how they know that their Moms love them. Ellie responded: "When she plays with me and my brother". I need to remember to sit and enjoy my kids instead of being so busy trying to get everything in life done that I hardly spend one on one time with them. It was a sweet reminder.
This is Jake by the way. We are out of the PICU and onto the Children's Surgical Unit. These are the best rooms in the hospital, but I digress. We got down to the floor and we heard a sound that we had never heard in a hospital before, dogs barking. Our new nurse asked us if we would like to meet the new dog. Nathan was really fussy as he doesn't like driving around in his bed, so we thought seeing a dog might cheer him up. Sure enough, we were right. A couple minutes later we met Rusty. Rusty is a golden retriever who is part of Intermountain Therapy Animals. Donna Olsen brought Rusty in and he laid down next to Nathan. At first Nathan was a little unsure about the dog and was still crying, but Donna had Rusty speak. Rusty barked and Nathan got the biggest grin on his face. He would giggle every time that Rusty would speak and he sat and patted Rusty for a good 15 minutes.
We are so grateful to all the nurses and doctors who have helped Nathan along all this time, but it is volunteers like Rusty and Donna who make our visits special. So once again this is a shout out and a thank you to Donna and Rusty for making Nathan's stay a little more comfortable. We also want to thank the volunteers from the Forever Young Zone who find toys for Nathan to play with. They are so good at picking out toys that he loves.
While we hope that Nathan doesn't remember any of this, Steph and I will always remember the special people who helped us and Nathan through these times.
This was posted on: http://www.wsoctv.com/health/19270986/detail.html
This is important to us because we know that Nathan's going to need a new pulmonary valve with his heart defect.
Congenital Heart Disease Posted: 11:04 am EDT April 24, 2009
Congenital heart disease refers to structural abnormalities of the heart that are present at birth. According to the American Heart Association, every year, about 35,000 babies in the U.S. (about one out of every 1,000) are born with some type of congenital heart defect.
More than 35 different types of defects have been identified. Some defects lead to a hole in the wall of the heart, a malformed or missing chamber or improper positioning of the blood vessels that connect the heart, lungs and body. A heart valve defect may involve a missing or malformed valve, failure of the valve to fully open (valve stenosis, or narrowing) or an inability to close completely, causing blood to leak through (valve insufficiency).
Replacement of the Pulmonary Valve
The pulmonary valve is a one-way valve that controls the flow of deoxygenated blood from the heart to the lungs. A child born with a defective pulmonary valve may not need immediate treatment if the problem is minor. But in serious cases, the defective valve interferes with the ability of the heart to pump blood into the lungs, eventually weakening the heart muscle. In those instances, doctors may recommend a pulmonary valve replacement through open-heart surgery. An incision is made into the chest to access the valve. The diseased valve is removed and replaced with a cadaver or artificial valve conduit (tube with a valve inside) that connects the right ventricle to the pulmonary artery.
While pulmonary valve replacement can greatly improve a patient’s quality of life, the average lifespan of the device is only about ten years. Thus, patients face multiple surgeries to replace the worn valve as they grow older. Thomas Jones, M.D., Pediatric Cardiologist at Seattle Children’s Hospital, says re-operation is technically more challenging because the surgeon has to cut through scar tissue. The surgery is also riskier for the patient, due to an increased risk for bleeding and infection.
Surgeons at select U.S. centers are now testing a new type of replacement pulmonary valve, called the Melody™ Transcatheter Valve. It’s obtained from a valve section of a cow’s jugular vein. Jones says the jugular veins of cows are about the same diameter as the pulmonary artery in humans and have well developed valves.
Instead of making an incision into the chest, the Melody valve is placed nonsurgically, via a catheter. The stent is closed to compress the valve and placed onto the tip of the catheter. An incision is made into the groin and the catheter is fed through a leg vein up to the heart. Once in place, the stent is expanded to open up the Melody valve inside the worn out valve.
Currently, researchers are testing the Melody heart valve in children who have already had valve replacement surgery and need another replacement. Preliminary studies show the valve can be successfully and safely implanted and, at least in the short term, leads to improved heart function. Jones says placement of the valve from inside of the body avoids the pain, recovery and potential complications associated with open-heart surgery. Although the new valve is not expected to last forever, investigators are hopeful it will reduce the total number of surgeries patients will need throughout their lifetimes.
In addition to Seattle Children’s Hospital the Melody Transcatheter Valve is being studied at Children’s Hospital Boston, Morgan Stanley Children’s Hospital of New York-Presbyterian Columbia University Medical Center, Miami Children’s Hospital and Nationwide Children’s Hospital in Columbus, OH.
For information on congenital heart defects: American Heart Association Congenital Heart Information Network March of Dimes National Heart, Lung and Blood Institute
This afternoon we took Nathan back up to Primary Children's Medical Center to have his cleft palate repair, again. He was just so happy this afternoon and had a great time playing with the toys in the surgical prep area. He only screamed when the nurses weighed him and checked his length. Nathan knows now that having those things done is a sign of something bad to come!
Ellie did the sweetest thing before we took Nathan up to the hospital. Grandpa Ellinger and Dad gave Nathan a blessing and before we left, Ellie gave her prized "Sparky" dragon to Nathan to take with him. She loved that toy and so it said a lot that she would let her brother take it with him to make him feel better. As hard of a child as she has been to deal with lately, its moments like this that I'm glad that she's ours. Now if only she hadn't made our food storage area a winter wonderland with the flour...that story is better saved for another post.
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."