Friday, May 30, 2008
Saturday, May 24, 2008
Madison, Elisabeth & McKenzie
Nathan Ellinger & Madison Olsen
A VERY random thing happened to me this last month. As I have mentioned in an earlier blog, Mary Walker, Nathan's OTPT, comes into our home once a week to work with him. About a month ago we were talking about how rare Nathan's abnormal jaw was. Nathan was never officially diagnosed with Pierre Robin syndrome which is the name of the syndrome where a child is born with a VERY recessed jaw. However, because of his recessed chin and airway issues it only partially explains what may be different about Nathan's genetics. Nathan doesn't only have a soft cleft palate; he is missing both palates in the roof of his mouth. He was also born having no natal teeth. It is assumed by the genetecists and neonatal doctors that Nathan's Tetralogy of Fallot, specific cleft palate (they come in several versions with Nathan's being the most rare), small jaw, and simean crease (only 1 crease in the palm of your hand with is most commonly associated with Down Sydrome) that his syndrome, if it is ever discovered, has something to do with the center of his body, with the exception of his hands, not forming properly. Nathan's problems tend to be more extensive than what Pierre Robin suggests. Back to the story though... Mary said that she is currently working with another mom who had a daughter in February that also has Pierre Robin syndrome. "In fact, you ought to go meet with this mom. You two would have a lot in common to talk about and I think that you'd really get along." She gave me her phone number and so I called her later that night.
When I made the phone call, what I really wanted was someone to talk to who could completely understand my frustration of Nathan not being able to eat from a bottle. I also wanted someone to cry with over having a child who is different and will have some extremely serious needs throughout his life. I called Leah and during our first conversation we talked about our kids and she gave me suggestions of what I could be doing to help Nathan enjoy a bottle a little more. We decided we would meet and we set up a play date. Leah called several days later and said she would have to reschedule because Madison was sick. Her voice sounded so familiar to me and so I asked her what her maiden name was. She told me it was Wheeler and she had graduated from Spanish Fork High School in 1999. I couldn't believe it! We had been in marching band together and Jake's best friend, Cody Jensen, had dated her as a freshman and sophomore. Leah and I had dated best friends at about the same time period. We were also good friends because of Marching Band competitions and concert band. We were so excited to be able to see each other again!
After a month of sick kids and rescheduled doctor visits, we finally were able to get together yesterday. We had such a great time talking about old times and also about our new adventures. Leah has two children out of four with Pierre Robin syndrome. Her oldest, Taylor, did not need to have jaw surgery. It may be that Madison will also not need it. Her challenge is that her baby isn't able to lay flat on her back because her tongue will block the airway and she'd stop breathing. Madison is eating out of a NG tube through her nose. She can do that because she doesn't have a nissen like Nathan. Madison is also extremely small for her age because she can't eat properly either. I loved hearing advice from her and seeing that with work, Nathan will be just as happy as Taylor is. Taylor isn't without problems; she still needs extensive speech therapy, but she seemed very happy and ok with herself. That's what I want for Nathan. Sometimes I worry that as he grows to be older he'll be teased about his speech or the countless scars from his open heart surgery, g-tube placement and jaw surgery. He's a boy and it just may be that he'll be proud of his battle wounds. Who knows?
These are the symptoms of Pierre Robin Syndrome:
Cleft soft palate
Jaw that is very small jaw with significant receding chin
Jaw placed unusually far back in the throat
Large-appearing tongue in relation to jaw
Natal teeth (teeth appearing when the baby is born)
Recurrent ear infections
Small opening in the roof of the mouth, which causes choking
One thing Leah told me that really stuck is that Heavenly Father only gives you those challenges which he knows you can overcome. Jake & I were trusted with this sweet little boy to teach him the gospel and to help him overcome his physical limitations. I can only hope that we are up to the task!
Thursday, May 22, 2008
Every week the occupational therapist, Mary Walker, comes into our home and works with Nathan on eating from a bottle and developing appropriate motor skills so he doesn't lag behind other babies his age since he will have spent nearly 3 months of the first 5 months of his life in the hospital intensive care units. Nathan refuses now to eat from a bottle. He doesn't get any suction and we've discovered that because he doesn't have control of the bottle he simply won't take it. He will thrust his tongue and push out the nipple. We make a special effort to squeeze milk into his mouth with a syringe to help him learn to properly swallow. We are very lucky that Nathan doesn't have a full on oral aversion and its his LOVE of his fingers that makes it that way. Nathan will soothe himself by sticking his thumb and pointer finger into his mouth at the same time and sucking on it. He is also learning to like his binkie and chew toys. He has an extremely tiny mouth which is comes with his Pierre Robin like syndrome. It makes it hard to stick much of anything in there. but boy does he sure try! Jake and I encourage him as much as possible to suck on his thumb! (The future dental problems with this are going to be endless!) If it encourages him to like things in his mouth, hopefully it will help him like food in there too someday! Jake & I are proud of our little "thumb-sucking" legacy we have left for Nathan.
The Bob: I LOVE IT!
Nathan the day the distractors were taken off: (Notice how far his jaw was moved!)
Nathan at 4 months old:
Although there are scars on the side of his face still, every day they are getting to be a little lighter. I think as a teenager he may want to grow sideburns to cover them! He is getting to be such a cute little guy!
Monday, May 19, 2008
I want to be able to enjoy the time I have with my kids while they are young but I constantly find myself trying to move onto the next thing such as dinner, baths, going to bed etc. that I miss those precious moments in between. I also feel pulled down by the constant cleaning, cooking and other maintenance items around the house.
So my question is: What do you do to simplify your lives to enjoy your families?
Friday, May 16, 2008
I have to say how much I love Primary Children's. The nurse practitioner assigned in the Same Day Surgery area took us right under her wing and helped us with everything she could possibly think of. She got me spare diapers, a heated blanket, bigger socks, a binkie, and extra tape for Nathan's g-tube. She helped me calm him down because he was so angry after not eating since 3:00 a.m. this morning. The anesthesiologist's name is Maria Fabroccini. She is wonderful!!! Nathan has been under her care several times with different surgeries for his jaw, nissen, g-tube and distractor removal. It was nice to see a familiar face who already knows Nathan.
So as we sit here in the waiting room with all of these nervous parents, we feel like old pros. This hasn't been the first time we've been here and it is far from being the last.
Tuesday, May 13, 2008
Jake & I paid off the last of our debts this morning excluding our house. (Wouldn't it be great not to have a mortgage payment anymore though!!!) We have no student loans, no credit card debt, no car payments, no hospital payments for Nathan, etc. IT IS THE BEST FEELING IN THE ENTIRE WORLD!!!
So what are we going to do with all of the extra money we're not paying out every month for debt? SAVE SAVE SAVE. The only reason Jake and I didn't fall flat on our faces when Nathan was born was the extra money in savings we had until insurance money and our tax refund came. We'll save up a good down payment for a new car within the next year or so and we'll put money away for rainy days and other medical necessities for Nathan. Alas though, even though we'll be saving a ton of money by not having any debt to speak of, the cost of living has risen so much for food and gas that we won't have tons of money left over every month either.
I just had to post our awesome accomplishment!
Tuesday, May 6, 2008
Jake and I are cleaning up and decorating the toy room (more pictures will come when it is finished.) Ellie thinks it is up to her to take on the painting. She has painted several walls when we weren't looking. This morning she was up to her "helpful" self and started painting the walls when I went upstairs to pick up Nathan. When I came back I saw what she had done and grabbed the paint roller from her. With an exasperated tone I said, "YOU ARE DRIVING ME BERSERK!" She turned around and calmly looked at me. With a very nonchalant tone she replied "Nuts, Mom. I'm driving you nuts."
I stand corrected. She was indeed driving me nuts!
Sunday, May 4, 2008
Nathan loves to be propped up to see where the action is.
Elisabeth (looking like a "ragamuffin" as my mom used to say when our hair and clothes looked that bad!)
Even though Elisabeth still treats Nathan like one of her baby dolls, she loves him immensely. She had climbed up next to him and was reading the book as best as she could to him. I think as they get older, Nathan is going to follow her around like a puppy dog. I firmly believe that she is likely going to be the one that helps Nathan the most to overcome the speech problems that he is going to face with his cleft palate. She LOVES to sit and talk to him and read him stories.
This is a Mic Key Button. It has a balloon inside of his skin holding it in place.
Since Janice, Sheena & Heidi have never seen what Nathan's button looks like I wanted to post a few pictures for them. The button has a cover across it that covers the port that the extension tube set connects to. During the day we bolus feed him (meaning we attach a large syringe to the connecting tube set and let the milk drain through over a half an hour or so using gravity). At night he is connected to a machine that pumps milk from a bag at a little over an ounce an hour. This goes on for 12 hours at night. At night he is fed about 14 ounces of milk and during the day he gets about 7-8. He has such a little tummy because of the Nissen and can only tolerate between 2 - 2 1/2 ounces of milk in his belly at a time. We are working on trying to up his feeding amount during the day and lessening the amount of food he gets at night. Right now because he is fed at night, he sleeps from about 9:00 p.m. to around 9:00 a.m. (I'm so spoiled. Now if only Ellie did that too!)
Up until 2 weeks ago we really didn't have any problems with the button. Now granulation tissue (which is the body's way of trying to close the hole on the foreign object) is forming. As the button is still relatively new I still can't put the steroids on the wound site to keep it from forming. Hopefully in a couple of days the doctor will prescribe some cream for Nathan's button. We don't know for sure how long Nathan will keep this. He has to be able to get all of his nutrition by mouth, which until after he has his surgeries we won't even know for sure.
Friday, May 2, 2008
First off, I wish I'd have pulled out the camera to take a picture. Maybe Jake and I wouldn't have been so mad about what happened and maybe just maybe Jake would have been smiling more while cleaning up after our natural disaster inspired by none other than Elisabeth.
To start off Jake and I have a tradition of every Thursday night watching "The Office" and "Lost". The house needed a little straightening up and so during the commercials Jake and I would race around the house with Ellie trying to pick up her toys, finish the dishes, etc. We made it through "The Office" of cleaning during the commercials when Elisabeth announced to me that she was going to go play with her babies in her room. "Finally some peace and quiet", I thought to myself. I was too tired to remember the number 1 cardinal rule of motherhood. Silence is golden only during naps..... not during playtime. Jake and I watched the next segment of TV until the next commercial came on. We got up to do our thing and I went to put some toys away in Elisabeth's room. To my horror EVERYTHING from Ellie's desk and chest of drawers was taken out and thrown in the middle of her room. She had then pulled out the baby powder to change her baby's bottom. She could have stopped there and I wouldn't have been so mad. However, she took the baby powder (in the largest size you can buy) and proceeded to fill ALL OF THE DRAWERS with it (for a grand total of 9 drawers). The entire bottle, which started out full, lined everything from the carpet to the bed to the clothes that she dumped on the floor too. Her room was definitely powder fresh as the bottle stated.
Instead of timeout, Jake and Elisabeth (mostly Jake) cleaned everything up. In what took 10 minutes or less to create caused an hour and a half of clean up. I don't think Jake wants me to ever buy another bottle of baby powder in my life. He swore up and down that he was going to have some kind of lung disease because of what he had to inhale. (I think Jake was very sweet to just start cleaning up without me even asking for help). We ended up not being able to watch "Lost" at all!
So the next time anyone wants to trade a child for a day... maybe Meticulous Maryn would be a better choice over Untidy Ellie.