This picture was taken when I was taking pictures of Nathan sitting up. Elisabeth can be such a character sometimes... she wanted a picture taken all by herself. She is such a cute girl. I can't believe how fast she is growing up!
I'm SOOOO EXCITED for Nathan!!! I can't believe that 2 1/2 months after his heart surgery and a month after his cleft palate surgery, Nathan is starting to sit up!!! (If you can't tell, I'm so happy for him... he can't even roll from his back to tummy yet but if he wants a toy he'll sit up to play with it when put in that position). After so many trials, this has been his biggest gross motor development skill he's started to do yet. He does much better without the helmet on (hence why he isn't wearing it in the pictures), but nevertheless he's doing it! We still have a long ways to go, tummy time is better but it isn't perfect yet. His tortocolis still needs some help (the muscles in his colar bone area are weak and tight), and of course there's always that dreaded eating issue....
I saw Carolyn Quigley (IHH President) last Saturday for Mercydez Haw's garage sale and was talking about some of the other families that are still up at PCMC. It really made me realize that if eating and growing are Nathan's major issues now to conquer (as hard as its going to be), WE ARE SO BLESSED. He isn't still up in the PICU and has been home getting stronger and learning and growing with Mom, Dad, & Ellie with him. Before I knew what Tetralogy of Fallot was and how it was fixed, I remember sitting alone recovering from my c-section at Orem Community Hospital wondering if Nathan was going to live and have a normal life. Life isn't going to a breeze for this kid, but the outlook is VERY PROMISING for him. Heavenly Father is truly looking out for us.
Sterling Alma Larson August 26, 1928 - March 11, 1991
My sister Anne, just called me and reminded me that today would have been my dad's birthday... not just any birthday either. Dad, if he were alive today, would have turned 80 years old. (See Mom & Dad Ellinger - you're just teenagers compared to my dad!) How many 27 yr olds can say that their dad would have been 80? Of course, having a dad that was 53 when I was born made it so he isn't here now.
I don't remember much about Dad, except that he was sick with heart issues which involved several heart procedures (different than Nathan's), and that he LOVED coke and the Price is Right. I also remember the afternoon that he took Janice and I to pick up mom from work and he got lost! Mom was furious when we showed up 3-4 hours late! As Dad was so sick, with one night a year or so before he actually passed away that the family spent the night by his bedside as if he were going to die, Janice and I were bounced back and force between Heidi and Bill's families. The years I would have actually remembered Dad, we weren't really with him that much. I wish that I could have known him better.
Happy Birthday Dad! We miss you and look forward to seeing you again someday!
This week has been full of doctor appointments! Nathan, Elisabeth and I went up to PCMC twice to see Dr. Siddiqi (plastic surgeon)and Dr. Park (ENT). Tuesday I left work a little earlier than I needed to so that we could go see Hollie (Elaina's Mom) and check on how she was doing. After we were done visiting her, we went up to the floor and met Jackson's parents as well. Its always so nice to be able to talk with people who really understand everything we are going thru. These friendships are priceless! Anyway, we got to Dr. Siddiqi's office 5 minutes before our scheduled appointment time only to find out that he had just been called up to the operating room. We ended up waiting for an hour and a half before we were called back to see the Dr and then waited another 20 minutes in the room before Dr. Siddiqi came in. The good news is that Nathan's palate looks great! His head is also growing nicely and he wants to see us back on October 7th to have his head reevaluated to see if we can goodbye to the helmet. He also gave me a scare though; he thought Nathan's tonsils looked big and that the ENT should look at them.
Wednesday we trugged back up to PCMC to visit Dr. Park. Now, Dr. Park is one of my favorite doctors of Nathan's. He did Nathan's jaw surgery. I vivedly remember him calling me at Orem Community Hospital after he had examined Nathan in the NICU to tell me my sweet little boy needed surgery and an ok from me to proceed was needed. He explained everything to me and made sure I was comfortable with proceeding. The day before Nathan's heart surgery we were wandering the halls at PCMC getting x-rays and lab work done and we saw Dr. Park in the hall. He immediately recognized us and asked us what Nathan was there for. I was impressed with all of the kids he sees that he remembered Nathan's name! So, we didn't have to wait nearly as long to see Dr. Park. He told me that Nathan's hearing is great but he was also concerned, like me, that Nathan sounds so "wet" in the back of his nose and throat. He stuck a camera down Nathan's nose and throat to find out what was going on. There is a lot of fluid back there and we weren't really sure why. Long story short, the tonsils are staying put and Nathan is staying over on September 12th (Friday night)for a sleep study to see if he has any apnea. At least this time the overnight stay is considered an outpatient lab proceedure and not an overnight inpatient stay.
I swear that if IHC weren't a "non-profit" hospital, I'd buy stock in it. I'm pretty sure that with Nathan being a million + dollar baby that we'd at least have paid 2 of the doctor's salaries for the year. Come to think of it, shouldn't we be getting "frequent flyer miles" there? A discount at least.....
With all of our company at our house lately, I have spaced out a few appointments until the last minute or I've completely forgotten about them at all! Last night, Jake and I decided to go to Macey's and stock up on a few items for emergency prepardness. We wanted to buy a 55 gallon water barrel but our little pontiac wasn't built to handle anything that size. After I got home from work, Jake & I called Brian to borrow his truck. We piled into the car with the kids and drove to Brian's house to pick it up with the intention to head to the store, transport our stuff home and then take the truck back to Brian. While I was at Brian's, Nathan's nurse called and said that she was running behind and that she would be to our house in 15 minutes. I had completely forgotten all about her! So we raced home while Hollie waited on our front porch for us to get there.
I was glad that Hollie came; I like having someone consistently weigh him and chart his growth. She also addressed some of our concerns, like immunizations, helmet problems, issues with the button... I'm just so happy to have someone come to us to help us instead of us taking ANOTHER trip to the pediatrician or up to Primary's.
Here's Nathan's current weight, height, and head circumfrance status: (He has his diaper on during his weight)
Way to go Nathan! He's gotten 3/4 an inch taller in the last month and gained 14 oz! That has been his best growth in a month ever! His head hasn't gotten any bigger (its just shifted with the helmet), but he is exactly following his growth curve!
I have to add in this post some Jake and Elisabeth funnies.... these incidences really tell alot about them!
First, Jake is a pretty funny guy with a lot of strong likes. He adores big screen tv's, HD, World of War Craft, his egg cooking toaster, and above all fresh corn on the cob. The other morning we were driving to Macey's and somehow by the old race track we got behind a farmer who was carrying a truck load of freshly cut corn on the cob. The truck was stopped at a stop sign and then lurched forward to go again. One of the pieces of corn fell off of the back of the truck. "Stop, stop!" Jake excitedly screamed. I was wondering what the heck was going on or if I had forgotten something at home. So I stopped the car and Jake jumped out giddy as a school girl and ran and picked up the piece of corn lying on the road. (I just have to add here that we are not that desperately poor; Jake just has serious food issues!) Leave it to Jake to pull a stunt like that!
Elisabeth has been extra concerned lately about her Grandma Ellinger because we include her in our prayers (along with Nathan) every night to get stronger. On Sunday evening I took Nathan and Elisabeth over to her grandparents house to visit for a couple of minutes. Grandma mentioned how much she loves Elisabeth's "Healing Hugs". Last night, Elisabeth insisted that she had to go to grandma's house just to give her a "healing hug". I told her that would be fine but that we'd quickly stop by and Elisabeth could give Grandma 1 "healing hug". Elisabeth was thoughtful for a moment and then added, "Ok, I'll give her 1 healing hug and 1 regular hug". I thought that was pretty funny that she using her little mind to figure out how to get what she wanted. She went off to play and then came back about 3 minutes later. "Mom, after I give grandma 1 healing hug and 1 regular hug, I NEED to play with her dollhouse!" Sorry grandma, I think the hug thing is just a ploy to be able to go and play with your awesome dollhouse! Kids say the darnest things sometimes!
So that's our life of forgetfulness, growth, and the Ellinger funnies!
Last night I took Elisabeth and Nathan with me to Regis Salon where Amy is the manager to get our hair cut. (Only Ellie and I needed a trim, Nathan pretty much only has peach fuzz on his head at this point.) Elisabeth was so good at the salon and I thought I had it so easy with the two of them. Of course, what I was really feeling was a false sense of security.
I came home with the kids and sat down for a minute to unload. Nathan started crying and Elisabeth had an "accident" pretty much at the same time. I took charge of the situation and told Ellie to go to the bathroom, strip off her clothes, and get in the tub. I went to Nathan and started "venting" his belly to help him feel better. Elisabeth was playfully chatting away at her dolls in the bathroom and so I thought everything was ok. As soon as I had settled Nathan down, I stripped off his clothes too to put him in the tub. I walked in the bathroom with Nathan to find Ellie in the tub with Aquaphor smothered EVERYWHERE!!!! The tub, floor, bath mats, vanity, mirror, Ellie's hair and body were all victim to Elisabeth's helpfulness. She had lathered up her body and hair with it like it was her favorite strawberry body soap. I quickly took care of Nathan's needs and instructed Ellie to stay put in the tub. I then put Nathan down to bed and took Ellie into my shower and scrubbed her hair 7 times with shampoo and dry clean towels. It was gross! She woke up this morning looking like she had just had a bath (her hairy was still that greasy). Nicole, our new nanny, spent most of the morning washing her hair with dishsoap. I'll have to see what it looks like when I get home from work.
I felt bad after I did this, but when Heidi's family came home with Jake last night at 10:00 ish (they had gone jeeping up the canyon), I was irate and got frustrated at everybody for leaving that out where she could get it. Ellie even knew she was in so much trouble that she stayed put on her bed and didn't dare budge an inch!
What a night! I was so tired from scrubbing the bathroom that I crashed on the bed when I was done. Being a mom is a completely exhausting thankless job at times!
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."