This morning I woke up at 4:30 a.m. to get ready to take Nathan to Primary Children's Medical Center to have Dr. Park perform another cleft palate surgery. There was a lot of thought put into Nathan having this operation. All of the doctors in in the craniofacial team said that Nathan needed it done. Not one of them could agree on the timing. Up to this point in Nathan's surgical history, the choice of when was never given. Its always been he needs this and he needs it now! The concern with this operation is that with all of the work we have put into giving Nathan an optimal airway, this could have set us back. Nathan has such a small mouth and jaw in comparison to what he should have. The flap that exists in everyone to close off their nose when they speak is missing in Nathan. He needs that flap! However, he is not and probably never would be a candidate for the operation to help him. So, we improvised... and had to beg Dr. Park to do this for him. Typically children like Nathan do not have this operation until they are 6 or 7. But Nathan is not a typical little boy. He's had several nasal endoscopies this year and did not cry or figit when the camera was stuck down his nose. He is a mature little boy with a lot to say and yet everyone has such a difficult time understanding him. This operation should help immensely. Even more than that - we want to be done for quite some time before Nathan needs anymore operations in his mouth. We are desperate for him to eat through his mouth. We have the potential to be done for a few years till his next open heart surgery. This break could make a significant difference to Nathan!
The surgery is done and it went well. The only issue Nathan is having is that when he falls asleep his airway compresses and his oxygen levels dip down to the requirement of needing oxygen. His poor mouth is swollen and he is having a difficult time speaking. But he is in good spirits. He will be staying overnight for observation and Jake is going to stay here with him. This is going to be the start of good things to come!
I took Nathan to his preschool open house during lunch today. He was so excited to see his teacher at Cherry Creek again. We adore Mrs. Foster and Natalie, her technician. Natalie has been WONDERFUL with Nathan and he loves her so much! I'm excited for the progress that I think will happen at school this year for Nathan. He's having a cleft palate surgery on Thursday. We are a little nervous, but happy to be doing something more for his speech. You wouldn't think that a cleft palate surgery would be a big deal, especially when compared to open heart surgery. I remember Nathan coding in the Intensive Care Unit after his tonsilectomy. This surgery has the potential to go really right or really wrong.
But the big push forward really came this afternoon. I sent the necessary documentation to "Our Children's House" in Dallas, TX to request Nathan be seen in a more intensive feeding clinic there. They are comparable to Primary Children's, but offer a more comprehensive feeding therapy. If Nathan is accepted for an evaluation and is seen as a patient whom can be helped, I will be taking off 1-2 months of my life to take Nathan to Texas to teach him how to eat. We have also looked into the Hershey Penn State program.
I'm feeling scared - mostly for the what-ifs. I want Nathan to succeed so badly and we have been at this for 4 1/2 years. This is new territory even for us; and a costly one. Our insurance will likely not pay - but Nathan is in desperate need for this care. We'll know in a few days a little more information.
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:
On the day I was married, I thought to myself... The is the best day of my life EVER!
On the day Elisabeth was born I recanted that statement when I saw Jake holding her in his arms looking so excited to be a Dad.
Though the day Nathan was born was very scary and many tears were shed for the unknown, I counted my blessings and thought that his life was going to help make mine happier and more complete.
I again recanted my statement when Emmaline was born. I was excited for Jake to once again hold a healthy baby and for Elisabeth & Nathan to have a sister. As I watched Elisabeth and Nathan hold her together for the the first time again I found myself thinking "This is the best day of my life EVER!".
I took these pictures on a Sunday morning when Emmaline was one month old. Though I was a little frustrated that each child wasn't entirely cooperating with me and the camera, I had this feeling of love come over me for each of my children. I am very much in love with each of them and cannot wait for all of the good days to come when I can think "This is the best day ever!". I feel very blessed to have them in my life.
Monday nights for the last three years have ALWAYS been hectic at our house. Its hard when I get home at 6:00 p.m. from work and bedtime is at 8:00. We rush through dinner, try to clean up somewhat, and then pull together a family home evening lesson or activity. Since yesterday was the first day of school, it was particularly hard to get everyone moving to have fun. Everyone was EXHAUSTED from Jake & I right down to Emmaline. We had a fun family activity of making sand art in leftover orange cream soda bottles and then got the kids into bed.
Our children are usually pretty good about going to bed when they are supposed to, but last night they were having a hard time. Nathan, especially, was so tired! Jake tried to put him in bed and Nathan just ran into Ellie's room. He was crying that he wanted to sleep by her in her room. I guess Ellie has been reading stories to him at night before bed and he wanted to cuddle by her and listen to a story. He was crying so hard that Ellie put her arm around him and proceeded to tell him to just go in his room and that when Mom and Dad weren't watching he could come back and cuddle with her. I was standing right in the room when she told him that! I'm not sure if I should have been mad at her or pleased that she wanted to make her brother feel better. So Nathan walked back to his room and got into his bed. I went downstairs for a couple of minutes and when I came back up Nathan was on Elisabeth's bed asleep and Ellie was on her floor with her head on a bean bag also asleep.
I love that my children love each other and try every now and again to make each other happy. I wish I would have taken a picture of them last night, but I didn't want the flash from the camera to wake them. It was very satisfying to see them together like that.
Elisabeth is officially a "grader", the term she gave to the older kids while she was in kindergarten. She wanted desperately to be a "grader" and be at school all day long with her dad and her friends. Today she got her wish. She woke up very excited and ran into my room at 6:15 a.m. to wake me up. She was quite upset at me for not already being up. It had been a long night with the baby and I just couldn't pull myself out of bed! She matter of factly told me I had to help get her ready for school so that she wouldn't make her dad late!
I pulled myself away from the clutches of my soft pillow and a warm baby I had cuddled up next to after feeding her at 5:00 a.m. and proceeded to help Elisabeth get ready. The first drama was that her socks (which were knee length for her skirt) did not EXACTLY go to the same length on each of her legs. After a little adjusting, we moved on to the next problem... her hair. I brushed her hair and flat ironed it to put her headband in. She was very perturbed that her hair length on each side wasn't EXACTLY the same length either. I ended up adjusting the headband and straightening out her hair a bit more and for some strange reason her hair length was the same again! She also needed the perfect breakfast of scrambled eggs. Jake made the mistake though of making YUMMY eggs instead of the plain eggs Ellie had asked for. Oops. Mental note - she is not a fan of fresh tomatoes and ham in her eggs for breakfast. After she picked at her breakfast Kathleen and Shanowa came over. I quickly took some pictures of Ellie outside, Ellie called grandma, and then Jake and Ellie were on their way for the first day of school. I should have taken a picture of her and Jake together, but Jake was frantically trying to pull his life together to get out the door! It was so cute to see them leave together and I'm so grateful that Ellie gets to go to school with her dad.
Even with the drama of the morning, I have to be grateful that Ellie didn't take it as far as my other niece, Jessica. Jessica was such a perfectionist that some days she would refuse to go to church or school because her hair wasn't just right, or her clothes were wrinkled, or she didn't like what she had to wear! There must be something about those girls who are headstrong. Jessica starts medical school next week in St. Louis. I wouldn't mind if Ellie followed in her footsteps! First things first... gotta make it through the 1st grade!
Emmaline was blessed on August 7th in our ward. You would that by having 1:00 church that it would be a piece of cake to get 3 kids ready, take some pictures, have the food for the luncheon ready, and make it there on time. Easy peezy-super cheesy (which is Ellie's new favorite term). Not so. Getting all of the kids bathed and dressed tended to be more of a problem than it should have been. Nathan's dressing needed changing, Ellie had wet the bed, and sure enough just before putting Emmaline's dress on she had a blowout. To the tub all 3 children went, even though they were all bathed the night before so it wouldn't be a problem! It wasn't that getting dinner ready was hard, it was just took time. Emmaline must have sensed that we were in a rush to get ready so she put a halt to all of that by needing to be nursed more than usual. And the list goes on and on...
We were at the church at 12:50. I count that as a small miracle, especially since I had to play the organ that day. After everyone was seated I breathed a sigh of relief that we were there and in one piece!
Jake blessed Emmaline and thank goodness after much teasing that her name ended up being Emmaline Reagan Ellinger. It was a beautiful blessing. Jake was very calm and collected in his thoughts. She was blessed that she would be a leader. She has such a calm personality and I believe that she will be some day.
After sacrament meeting, we went to the clubhouse and had small luncheon. It was so fun to show off the baby to everyone. After we went home that evening and I had a moment to think while nursing the baby, I decided that was the perfect way to end my maternity leave. We celebrated being a family, which in my book, means more having all of the diamonds or gold in the world. My husband and children are the crown jewels of my life.
It feels so nice that for the first time since having children I am not afraid of my baby. You know that first time you brought home your first child and the thought of "What on earth am I doing?" haunts you? I loved Ellie, but it was very different being a first time parent. Then Nathan came along...if I thought I was scared of Ellie, I felt that I had just walked out unarmed on the front line of a battlefield in the Civil War. It was new and very scary territory. But just like with Elisabeth we were blessed with the ability to be able to learn and appropriately respond to his needs. Emmaline's birth was so much different in that respect for our family. We were excited and felt prepared for her. I can hold her and am still in awe of being her mother, but not afraid to face the challenges that might come with her. I feel very blessed beyond what I truly deserve to be the mother of Elisabeth, Nathan, and Emmaline.
As far as the birth went compared to the other 2 kids, she was as easy as can be. Emmaline was a scheduled c-section. We got to the hospital at 5:30 a.m. (we should have been there at 5, but I just couldn't get myself moving that morning!). The kids had spent the night with Jake's sister, Kathleen, and so we didn't have anyone to drop off. The night before I was reading a book and just couldn't put it down. I had no kids to take care of and I really was into that book! Finally at midnight Jake and I decided to go to bed. I tried my best to get up and moving at 4:15, but I just couldn't do it. We quickly got ready and left our house at 5:15 or so. We arrived at Orem Community Hospital at 5:30. The nurses quickly got me to a room and I got dressed for the surgery. As usual, it took 4 pokes to find a vein for an iv. After dealing with that, I walked to the OR with Jake by my side and slid onto the operating table. No problems with the spinal. The best part was that a friend from my ward, Kayla Augastine, scrubbed in the surgery to help out. Dr. Judd arrived and everything went very quickly from that point. Janice, my little sister, and Patsy, Jake's mother, were waiting very patiently outside of the OR watching it all happen. After Emmaline was taken out, she was shown to me. She had a good husky cry. When I heard it I was relieved! She was not gasping for air like Nathan was. She was big, beautiful and PINK! She looked so much like Elisabeth when she was born. After the operation was complete, the dr's and nurses helped move me to a bed which was when I got so sick! I began throwing up and the nausea and vomiting didn't end till late that night.
Once I was back in my room and made comfortable, Emmaline was brought to me. I almost cried holding her in my arms. I guess I didn't realize how much that moment would really mean to me. I didn't have a 3 minute glance at my child and have her wisked away wondering what was going on. I was able to hold her, smell her, and appreciate that little life that was given to me. She did have a hard time learning how to nurse, but that was so mild compared to any other problems.
The problem with having a c-section is the sleepy, loopy feeling that I always have. This time was no different. After trying to feed the baby, she was passed off to a more that willing Aunt Janice and Grandma Ellinger to be loved and smothered! The best part of the day was when Nathan & Elisabeth were brought to the hospital to meet their new sister. Nathan just kept asking if she was his sister that came out of my belly and Ellie was love-struck!
Nathan sat and read Emmaline Mickey Mouse and Elisabeth kept telling Emmaline that she was her big sister and how much she loved her. There's just something so satisfying about seeing your children respond to another sibling like that.
As for Emmaline's name... Jake and I couldn't reach an agreement on her name till she was 3 days old. I loved the name Emma or Emily, but Jake wasn't to hip on either. Kathleen suggested Emmalyn and Janice said she liked Emmaline. Once I told Jake that Emmeline Wells was such a prominent figure in both Mormon History and American History he was all for that name. At first it seemed like such a proper name for a little baby, but it really does seem to fit her. I was released from the hospital on Friday morning. I felt ready to go home and to be a mother.
As an older woman in my ward put it, Emmaline is the reward for taking care of Nathan. Before having kids I couldn't understand how you can love your children so much and each of them on an individual basis. I love Nathan for who is he and what he has overcome and will yet overcome. I love Emmaline and feel so blessed that she is healthy and content. To be a mother of 3 has been an interesting change, but a welcomed one.
Elisabeth has been participating in the Reagan Reads program at her school. Her goal every month is to be the first one in her class to be part of the 500 Club, which is a group of kids that read 500 minutes every month. Ellie has been a member of the 500 club every month of this school year. They get rewards like free miniture pizzas from Pizza Hut, an ice cream from McDonalds, or a hamburger from Burger King. Her reading abilities have really picked up since January and it has been nice to see the progress she is making!
Yesterday KSL's Chopper 5 paid a visit to Reagan Academy since it is one of the top schools in the state for the number of minutes tracked on KSL's Read Today program. Ellie was chosen by her teacher to be one of the "greeting group" of students that got to go meet the Easter Bunny. She was SO EXCITED to be chosen. At dinner last night we were talking about how her day was at school and she told me all about the helicopter and meeting the Easter Bunny. I told her that when I was in school that I didn't ever get to do anything that cool. Jake piped up and said when he was in elementary school he was able to meet Govenor Bangeter. Ellie was very unimpressed. "Dad, that is no where near as cool as meeting the Easter Bunny!" Apparently meeting a fictional character outranks the leader of a state.
All of that aside, having this visit and seeing herself on tv last night made Ellie even more motivated to keep working on her reading. This is a great program that KSL offers to the kids!
In January I began my term as the acting treasurer of Intermountain Healing Hearts which is a non-profit organization that supports families with loved ones of congenital heart defects or onset childhood heart disease. We are so excited that this year the organization will be adding a 5k to its list of events. We are working towards raising money for the Heart Camp in August which is a family camp for heart families that is held at Camp Wapiti. If you are a runner and/or knows someone who loves to run - this is for a great cause!
This year I will not personally be running (with a pretty good excuse of being 36 weeks pregnant :), but next year I plan on participating even though I have never been that great of a runner!
Registration can be done through IHH's paypal account. The registration form is as follows:
Jake's grandmother, Marion Ellinger, passed away on March 18th in Sacramento, CA. We drove to Northern California to hold a memorial service for her with Jake's sisters Kathleen and Kristin. Since it was snowing heavily in the Sierra Nevadas and Donner Pass was closed, we opted to drive to Las Vegas, then over to Bakersfield, and then up to Sacramento. We were fortunate that we were able to stay at Jake's Uncle Tom's home in St. Helena.
We arrived in St. Helena on Sunday evening. The following day we drove to Sacramento to meet Sheena and Maryn at the Nut Tree. We were disappointed that the rides were not open yet for the season, but the kids still had a good time playing with each other on the wooden horses, the teeter-totter, and the merry-go-round. I am so grateful that my kids have cousins so close to their ages that they can play with!
On Tuesday morning we held the memorial service at the LDS branch chapel in St. Helena. What a beautiful spirit we felt. Jake's dad, Bruce, gave a wonderful history on his mother. Kathleen and Sheena sang a duet, Jake gave a talk for the children on what happens to our spirit after we die, I played a piano solo, and Kristin helped the children sing "I Am a Child of God". Libby, Mallory, Elisabeth, Nathan and Maryn sounded WONDERFUL! I think grandma would have been very proud of their little voices that sang with such conviction. Even Nathan tried to sing some of the words and to be somewhat reverent. We also gave a memory of grandma and talked about her for a little while.
I wished that we could have stayed a couple of days to enjoy being together as a family, but alas, with the snow clouds looming we drove home after the luncheon for the funeral. It was much better to drive home on I-80 than the detour we took to get there!
I know that Grandma was not LDS, but her character and convictions in life helped to shape many other's lives. Her choices brought about many grandchildren and great-grandchilren who are pretty special people. We will miss her dearly.
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."