Well I have found something new and fun to do lately.  Four wheel riding!  I don't know why for sure.  Is it the feel of the wind racing around me or the idea that I get to spend more time with my husband?  All I know is that it is the first thing I have done in the last few years that has truly felt like a break from all my responsibilities... Freedom from therapy, catheterizing, stress of illness, especially UTI's... I don't know.  So many different things that seem to bundle up into one big stresser!  I haven't blogged for way too long!  I'm sorry to the people that have been trying to follow Ellie's story.  I guess life has just been too busy.  I feel like I've been on a roller coaster ride full of twists and turns, stop and go, and ups and downs.  

        Ellie is close to being 2 and a half years old now.  She has large equipment in our front room that she uses for therapy each day.  She received her first pediatric wheelchair just before she turned two.  Her first chair was a homemade bumbo trailer with small bike wheels at 18 months.  Ellie had that bumbo wheelchair figured out within a month from when she very first got it.  So she was very ready for her pediatric chair because of that.  It's been one of her biggest blessings in life.  And at the same time there are many times that I think "wow" this is why 2 year olds don't have wheelchairs normally!". She goes all over and is not scared to try anything.  I can't count how many times I have had to stop her from trying to go down the stairs in it.  We've also learned that grass and her wheelchair do not mix.  Her first and only tumble was in the grass.  Luckily it scared her, but didn't hurt her.  

      This year has also been a huge milestone for Ellie when she is out of her chair.  Ellie is now scooting all over the house.  Its great to see her figure out how to get around No matter how strange it looks!  Ellie has terrible eyesight too so after getting her fitted for those, she has tried to scoot farther to the objects that she can now see from a distance.

       Since the last blog, Ellie has had incredible improvement with her hearing.  After a few surgeries, tubes in the ears, and many miracles, Ellie hears above normal now.  Because of the amount of time she couldn't hear and her premature birth, she is still working on talking and saying words clearly.  She has about 70 words that she says regularly now and she is working really hard on two to three word sentences.  In November 2011 Ellie had some pretty serious throat surgery. We discovered her 4+ tonsils (worst tonsils you could ever have) and enlarged adenoids.  Also with that was tons of fluid in her ears as well.  And the surprise was a Laryngil Cleft on her vocal chords.  So after a total throat reconstruction and another tongue clipping, Ellie has had very vigorous oral therapy to help build up her mouth and tongue muscles.  One of her biggest problems right now is that she can't lift her tongue to the top lip.  She can finally stick her tongue out, but not up because her muscles just aren't strong enough.  If we don't fix this she will not be able to talk properly or eat certain foods as she grows so this is a top priority. 

      As far as Ellie's lower extremities, she kicks more but still not enough for those quad muscles to develop in order for her to walk.  Her hips are the worst they can be, but this is a possibility with her condition.  So we weren't too surprised about them going out again.    The other thing we learned in the last year or so is that she has some malformations with her brain too.  These malformations could affect her in the future so we have more info on things to watch for that can be affected by it.  

        All in all, it's a busy life.  Trying to keep up with a special needs child and a normal school age child has its obstacles but I still feel so blessed!  I've learned a lot and I am finally hitting the new normal mark after having Ellie.  Other Spina Bifida moms told me that I needed to give it two years before I could feel somewhat settled and they were right.  Life is good!  Yes, still busy and stressful but good!  I have realized that there are many challenges ahead for our little family. More medical issues are coming and continuing, but I know I can handle it. God is on my side and in my heart.  I can get through anything as long as I remember that. 

       It's funny... Earlier as I rode up over the hill from my parents home, a flood of memories from my childhood came over me.  I ran and hiked those hills only 15 years ago.  I never thought my life 15 years later would have turned out like this!  But at the same time, I would trade it for nothing!  Oh! How I have grown since the last time I went into those hills.  It was great to know and feel a sense of accomplishment for what I've done with my adult life so far.  A lot of my dreams came true and by dreams, I mean the important ones!   The ones that count eternally!  

THE ELLIE PROJECT

Hi Family and Friends!

Our little family has an incredible opportunity with the help of your support. The J Rodie Hope Alliance Foundation, based out of Boise, has agreed to help us with our home situation.  We desperately need a wheelchair accessible home for Ellie.  The amount of support this foundation gets will determine how much they can help us!  This could be as big as a new home if everyone helps.  

So this is what we need you to do – go to the PayPal account below and donate $1, $5, $10, $20... Whatever you feel you can do.  It doesn't matter how much, just that you donate and spread the word about this foundation.  Please pass this on to at least 2 people and ask them to do the same.   Hopefully a chain reaction will blast out of this so the foundation investors can see how much support we have for this project!  The cool thing about this donation is 100% goes to our family project.  

Also, we need this done as quickly as possible.  Please go to the PayPal account and put in your donation.  It's very easy and only takes a couple of minutes.  If you have any questions or concerns, feel free to ask us.  Thanks ahead of time for your support and love!  We know we can count on you guys!!!!  

Love,  Earl, Emily, Emma, and Ellie

___________________________________________________________________________________

Friends! PLEASE- Help Support the J. Rodie Hope Alliance to raise funds for 2012 events!!  Your donation of $20.00 or more will earn you a chance to win a JR Hope Alliance Sunshade for your car, t-shirt, bracelets, and a raffle ticket for our upcoming raffle for over 50 prizes. 

THANK YOU! 

https://www.paypal.com/cgi-bin/webscr?cmd=_sxclick&hosted_button_id=E7TN8CK644AKY

 Please pass this onto your friends & family!!! 

  On behalf of the J. Rodie Hope Alliance, thank you!

Website: www.jrodiehope.com

CEO/President: Jason Rodie

Phone: 208.861.4554

Slow and Steady Wins The Race...

I am late updating. But there is not a lot of time in my life right now. Sorry about the pic. You'll just have to turn your head. Lol!

We went back to the spina bifida clinic on the 8th of June. We started off with the hearing test again at Elks Rehab. After her test, she showed major improvement on her most severe hearing loss. Her hearing went up 40 to 50 decibels which means it is showing mild hearing loss. A Miracle! Thank you all for the continuous prayers! It really makes a difference. After we got through that appointment we had a crying fest with my dad. It is amazing to see that her hearing has improved so dramatically. The audiologists were even surprised. (My dad was in Boise for conference meetings luckily at the same time we had appointments.) Went to lunch and then on to the spina bifida clinic. Ellie's right hip didn't change from the last time we saw Dr. Showalter (Othopedist) but we don't really know if it will. We are keeping her in her harness at night until the middle of July and Dr. Showalter will decide then what we should do after that, if anything. Because of the spina bifida, she may just have a weak hip because of the neurotube defect. Dr. Showalter prescribed Ellie her first AFO's. (Ankle Foot Orthodontics- Orthopedic footwear) This foot brace will help her feet not concave and hopefully straighten out. These are also the type of shoes she will have to wear in order to possibly walk. So, this is the biginning of a lot of these braces. We went into Rehab Systems here in Twin, and Mary (the specialist that makes them) cast her feet and legs. She told me that Ellie's feet were the smallest she has ever done. I guess that spina bifida kids do not get their first pair of AFO's until they are atleast one normally. Ellie is once again challenging the medical field. She has done this with so many things. Back to the Boise trip; After we were given another bezillion things to add to her physical therapy from the spina bifida PT and the neurosurgeon gave his stamp of approval, we went back to a friend's home that kept Emma for us and had a nice BBQ and some much needed relaxation time.. On Wednesday morning we went to go see the Urologist for Ellie's first official appointment. Our Urologist is Dr. Waldmann. He is absolutely wonderful to work with and we have heard that he is one of the best we could see. Ellie's Uerodynamics test results were not good. They tested Ellie's pressure levels in regards to her bladder. A normal bladder should only have a pressure level of about 40. Ellie's pressures were 90. (It is a long process to explain why her spina bifida affects her bladder and kidneys. Just think of it as a nerve defect so the triggers to the brain to open everything up in order for her to urinate normally does not work right. There is a message being sent to the brain that is not making it through the entire cycle. If you want to understand this better, call me...) This means that she has to start being catheterized. This is why I have not updated the blog because I am trying to learn how to do this to my little baby four times daily while we are working on getting her bladder to stop spasming completely with medicine that relaxes the bladder so she won't be able to urinate on her own. She has to be given her medicine three times a day too, so hence...I don't have a lot of time for much else right now. We have to cath her because if we don't, she could have the possibility of the urine going up into her kidneys instead of down and out normally. This would cause some serious problems. Even life threatening. So, all in all, 2 steps forward, one step back...slow and steady wins the race. This is definitely my new motto I have adopted. Catheters are scary and hard right now, but when I think that I will be able to possibly have a talking conversation with my daughter one day, I feel that the catheterizing is a good trade off. How grateful I am for her health and strength, for her sweet spirit and her fun personality coming out a little more each day. She is incredible and she is so strong!!! I can't get over her strength. She continues to teach me every day that I can do so much more than I ever thought I could. What an incredibe blessing for our entire family. Emma is amazing with her and her daddy loves her and makes her giggle more than anyone else can. Small little miracles happen every day as she continues to develop and grow. She is now over 15 pounds and 23 1/2 inches long. All in all, she is in great shape. I am finally not crying like I used to and I am finding a routine that works for us all. I am so thankful for my savior, for the fact that He knows me and takes care of my needs. He knows the trials that we all have to face in order for us to become strong enough to return to our Heavenly Father. Slow and steady does win the race and if I keep this in my mind I can continue to do all that I need to so Ellie can have the best life possible!

Rambling....

For some odd reason I keep reflecting on what our little family has gone through the past year and I try to compare it to where we are now. When I first found out about Ellie's condition, I cried. I don't believe that I have ever cried like that before the news of hydrosephalis. And now I find myself crying almost just as hard and frequently. I have a dear friend that has gone through an incredible heartbreak recently. Her journey started out with hydrosephalis too. Our paths are quite different regarding this crazy disease. My baby is here and her baby is back in Heaven. Sometimes I wonder why my baby stayed and why hers didn't. But I know that Heavenly Father has a plan for all of us and I also think that maybe her baby was just too good for this life. I feel for my friend and I can't imagine going through what she is going through right now, but in a small way our grief has a lot of similarities. Both of our lives have been forever changed because of this disease and I have found that our reflection on life 's plans are up in the air. We both have no idea where this new world will take us. I hope for the day that I can feel a little in control of my life again, but I have also realized that we are not here for ourselves, even a little bit. Earl and I went out of town last weekend and the ward we were visiting had some incredible speakers. They spoke of service. I have been having a difficult time lately trying to figure out where my old life a year ago fits in with my new life presently. And the truth of the matter is that it doesn't really fit right now. I keep trying to make it work, to balance all of it, but my heart is completely into Ellie and my family. I think it might be this way because of the appointments and therapy that keep me hopping, but also because my perspective has changed. I want to keep serving others and I feel like a failure because I am not even getting anything accomplished in regards to serving anyone outside my family. But how do I do anything full heartedly when my passion for the things I loved before is gone? I guess gone is pretty harsh. I love the scouting program and I still love music and teaching, but how do I balance this along with these crucial years ahead for my daughter? Wow, the famous saying that goes something like "Life isn't supposed to be easy, only worth it..." is very true. Maybe this is the time where family does come first or maybe I haven't given myself enough time to adjust. Is there an adjustment period that ends? What if it really doesn't end and I end up not serving others like I am supposed to. One of the speakers said that those that lose there life to serving others ends up finding their lives in the process. Am I going to be all that Heavenly Father wants me to be? Or will I fall short because I can't figure out how to do it all? And how am I a good example to my children if I can't even figure out how to show them how important it is that we serve others around us and not just ourselves? After all of this mumbo jumbo of rambling on, I guess that my answer is still time... I need time... time to figure out what my Father in Heaven wants me to do...time to sort out my emotions with this entire experience and where I am supposed to go with all of it. Strength is not something you are...I believe it is something we all grow into depending on what challenges we each have. Maybe I need time to build up more strength to handle what is to come. My dear friend has been an amazing source of strength to me. I know that she is much stronger than me and I am looking forward to being able to learn and grow from her strength. One thing that I do know is that I am stronger now than I was before this life changing experience. And although I may not feel strong enough to to do everything I need to every day, I have a chance to build my strength and I hope to be able to add my old life back in with my new life. We have a busy week ahead of us with more Boise appointments. Hopefully Ellie will get feeling better. She is dealing with her first cold right now, but so far is handling it pretty good. More updates to come soon! Thanks for everyone who gives me strength and shows their love toward our family. I don't know where we would be without you...

Another update...

Well, we just returned from another Boise trip. Ellie's hips are now stabilized. The orthopedist told us that he was very surprised because he expected the hips to not ever be stable. She just keeps showing us more strength than any of us expect from her. So, Ellie is now able to be out of the brace during the day. She grew a lot since the last appointment, so they also fitted her for a new hip harness for night time. She now wears a medium and it is so clean!!!!! I love it! Dr. Showalter asked me what I was going to do with her old one. He asked if I was going to burn it because he knows how much I despise the nasty thing. I told him..."Of Course. We are having a big old bonfire for it!" We all laughed. I am so grateful for amazing doctors. We have been so blessed. I am especially thankful for my little girl this week. Not everyone recieves the same results as we have with babies that have special problems at birth. I figure that Ellie must have something really important to teach us. Emma is loving her more and more every day except for when she is watching her Dora show and Ellie starts crying. I have to watch out for that one because the other day, Emma put a blanket over her to muffle the cry. When that didn't work, she went for the pillow and I had to quickly intervene and explain to Emma that she could not do that to her sister ever and that it could kill her. Emma was wide eyed not realizing this. It scared her enough that I don't think she'll do that ever again. And so the sibling rivalry begins! All is well. The blessing was amazing! So many came to support us. I stopped counting after 120 people. Thanks to everyone for all of your love and support. We still feel that we are only beginning this journey with Ellie. Much to learn and many unanswered questions. We learned our first 25-30 signs for Miss Ellie this week. Emma loves it. She is learning just as fast as us. It's amazing. I was scared to start this new journey, but now that we have started I am actually really excited! It is a lot of fun. Ellie will probably be fitted for her (first of many more to come) feet braces sooner than later. We will find out the details on that probably within the next month. Thanks again and again to Aunt Rachel for making Ellie's blessing dress and for teach Emma her sunbeam lessons during our long homebound state. Also, thank you Bethany Cook http://www.setintimephotography.blogspot.com/ for Ellie's pictures. We love them! You are incredibly generous, an amazing woman with so many talents! Thank you for thinking of us and calling us again! We will post more pics soon. Love you guys! Thanks for your continuous prayers, love, and support!

April 22,2010 A much needed update!

I have recently been told by a dear friend that we have terrible luck. Another friend asked me why the universe was against us. I have to admit that I have had my moments of frustration because of the different things that have been happening to us the past few months, but all in all, we are so blessed! It has been fun getting to know the Elders Quorum a little better. We have a great group of men in our Ward and they are so willing to help when it is needed. Thanks to all that came over to help with our water line. Just thought I would show some pics from that day. I finally have realized (for now... hopefully I will hold on to this insight...) that whatever may happen to us or whatever we may have to endure in this life, there is always a solution no matter what. We are here to help each other through any crisis. Serving and putting everything in the Lord's hands is very important and if we can do this, all will fall into place. We may have to be patient about it and we may go through times where we don't understand the reasons, but the Lord does reveal the reason eventually. Sometimes He is quick to reveal and sometimes it takes years to reveal His reasoning. All I know is that He does this at the right time, the right place, and when we are ready to understand it. How grateful I am for my little family and for Ellie! The Lord knows what He was doing when he sent her to us. She is incredible and doing well! This morning was the first time that she sat with me laughing and smiling--reacting to me for about 5 minutes straight. It was an incredible feeling considering that before this morning, she has had very brief smiles that never stayed. If you blinked, you would miss it. It is so overjoying to see her smile at me. When she was born, she didn't have a facial expression at all. It is amazing to see how far she has come and every little new thing she does becomes another miracle to us. This morning, while I was talking to her and laughing with her, I became overcome with emotion because of this. It is so difficult to not know what the future holds for her and the things that she will be able to do or not do. But, the Lord will give her what she needs. This I know for certain. Our family is so excited to finally be at the end of our homebound saga. Ellie will be blessed on May 2nd at 11:00 am at the Harrison Stake Center. A luncheon will follow. I hope that all who would like to come will come. Everyone is invited to both so please let us know if you are coming. We want to thank all of you in some way for the never ending prayers and love you have shown our family this past year. Call us so we have the correct food count! (208) 733-2059. I will try to not take so long to write the next entry...oh...her medical update for the past month. She is close to 11 lbs now. The Orthopedist believes that her hip has stabilized. They will do an ultrasound on it in May and if all looks good, she will go to part time with the brace. They are planning on bracing her feet as soon as the hip brace is off, but at least she will be able to wear clothes normally with those braces. These feet braces will hopefully help her curled up feet to become straight again. She has been having some acid reflex but the medicine seems to be working. Her uerodynamic test in Boise is coming up soon, so that should give us some more insight on her bladder and bowel control. We still are very happy with our nurse and our physical therapist. Both say that she is progressing all the time. That is what we want to hear. So now that I have made this too long, it is time to post this. Please come to the blessing. We are so excited to see everyone again and to finally show off our beautiful little Ellie in person! We love you and are excited to see you soon!

Ellie's New Look

Ellie was fitted for her first brace last Friday on March 12th. Her Bone Doctor is Dr. Showalter from Boise. We will be going to see him every two weeks for as long as she has it on. We should know in 8 weeks whether the brace will help her hip displacement or not. If it doesn't they will take the brace off and that will be that. We did find out that if the hip harness does not work, she will still have a good chance of walking. So this is great news to us! Ellie weighed in at 8 lbs 7 oz this week. She is getting fat rolls all over and it is pretty amazing to see her looking so healthy. So far we have stayed away from sickness. We are a little more than halfway finished with being homebound. It seems incredible to think that she is almost two months old. She has been such a fighter from the very beginning and she continues to amaze us with her strength and spit fire personality. Her lungs are getting stonger and stronger. She wakes up the whole household when she wants to eat at night. She has figured out how nice it is to be held. This makes it a little tougher for us to get anything done, but she is worth it and babies grow so fast anyway that we might as well take advantage of holding our little Ellie. We still feel an incredible spirt when we are around her. I hope that she will always have that spirit. Heavenly Father is blessing us immensely through angels in heaven and on earth. Thank you to all those that have helped us out in one way or the other, whether you feel it is big or small. All of the service you have done is a huge blessing to us! Thank you, thank you, thank you!

It is time to update everyone on the new things we learned about Ellie this week. I apologize to those that read this earlier. I messed up my draft somehow trying to edit pics into it so I am having to write it over. We went to Boise on Tuesday and had an all day doctor event. Our first appointment was with the Elks Hearing and Balancing Center. At this appointment we learned that Ellie has Bilateral Auditory Neuropothy. In simple terms, all of Ellie's mechanical parts of her ears work just fine, but in the middle of all the mechanics is the auditory nerve that signals to the brain to hear. Instead of clearness of sounds and words, she hears static with it. It is best described like you are trying to tune into a radio station and the speakers are not functioning correctly. The louder you turn it up, the worse the static gets. She may have good days or moments or bad days or moments. It will be quite interesting to see how this turns out since there is not really a great way to help people with this type of hearing loss. I am inserting an article we found that also might help describe it. "Auditory Neuropathy is a hearing disorder in which sound enters the inner ear normally but the transmission of signals from the inner ear to the brain is impaired. It can affect people of all ages, from infancy through adulthood. The number of people affected by Auditory Neuropathy is not known, but the condition affects a relatively small percentage of people who are deaf or hearing-impaired.
People with Auditory Neuropathy may have normal hearing, or hearing loss ranging from mild to severe; they always have poor speech-perception abilities, meaning they have trouble understanding speech clearly. Often, speech perception is worse than would be predicted by the degree of hearing loss. For example, a person with Auditory Neuropathy may be able to hear sounds, but would still have difficulty recognizing spoken words. Sounds may fade in and out for these individuals and seem out of sync. "
The next appointment was our first spina bifida clinic with Ellie. This is an incredible resource to the spina bifida community because we get to go to the Children's Specialty Center at St. Lukes and in one afternoon we meet with all of the specialists in one location. This saves us on days and hours of follow-up appointments to Boise to meet with all of Ellie's doctors. So while we were there we met with her pediatric orthopedist. He diagnosed Ellie with a weak left hip that easily displaces out of her socket. The only way to try to help her hip become stronger is to put her in a hip harness brace for 1 month to 3 months. Ellie will be in this brace for 23 hours a day. She is being fitted into it next Friday on the 12th of March. There is a possibility that the hip harness does not work because of her spina bifida so we will have to wait and see. We are praying that it will work! It has been a tough week, but eventually we will find our way through her newly diagnosed conditions and be ready to move on and help her with whatever we can. That is it for the update and hopefully all is well with everyone else! Oh, I almost forgot. Ellie also formed an umbilical hernia in the past week, but at least this is an easy fix compared to everything else. Thank heaven for easy fixes!

Hope you enjoy the new pics. Thanks to Katie Dalling Photography! We got some good ones!

Ellie is now 7 lbs 2 oz! It is incredible how much she is growing but it is also fun to have a new born baby for a while! Tomorrow is her month old mark and today is her due date. What is ironic is that when Emma was born, she weighed 7 lbs 2 oz and Ellie is that exact weight today on her due date. So I guess that we can say that she is towing right along with how she should be in a normal situation. It feels good that she is growing so well. We have our first clinic on Tuesday for Ellie in Boise. We will be definitely wiping her out that day. A head ultrasound around 9 am, her hearing test at Elks Re-hab at 10 am, and then her spina bifida clinic at 12:15pm. (This is the big one where she sees multiple doctors in one place...probably between 3 to 4 hours for this appointment.) I think that we will all be exhausted by the time this day is over, but we should have some more information on how Ellie is doing over all and what steps we are taking next with her medical problems. I am actually really excited for the clinic. It will also be nice to get out for a whole day even though it is to Boise again. Earl gets to come with me which is absolutely wonderful. It has been so much easier to go through this with him by my side. I love my wonderful husband! We also took some more photos with our girls on Monday night. She has them posted on her blog too. If you want a peak, it is http://www.katiedallingphotography.blogspot.com/. She spent hours with us at our home and we had a lot of fun trying to keep Ellie happy with pics of her only in her own skin. She was a trooper and Emma was incredible. She hung in there so well! So we now have a lot of photos to choose from. It is really fun having so many pictures! We have never had this before and we are so grateful for them. They are all a priceless treasure that we will forever be grateful for! Hope everyone is doing well! I know that we really need to post some more pics. It is going to happen eventually. Take care. Hope everyone enjoyed the snow we got for a day!

This weekend has been fun and adventurous. We had the opportunity to get pictures done of our family with a friend of ours in our ward. She offered to shoot some pictures and we gladly took her up on it because she is really good! Earl dropped us off at the studio and ran to go get a white shirt for our Eternal family picture. While he was out and about, the transmission went out on the suburban. Yay.... we do have so much to be grateful for but I guess when it rains, it pours. Taking those pics of all of us dressed in white definitely took us away from the temporal things in life and helped us focus on the eternal perspective again, at least for a few minutes until the shoot was over and reality set in. The joys and memories in life that we will hopefully laugh about later! Anyway, our friend put about 8 pictures of our family on her website for anyone to look at. The link to the site is http://setintimephotography.blogspot.com/ if anyone wants to see them. We will also be adding more pics soon. We haven't forgotten. I guess that I am just valuing sleep a little more than anything else whenever I can. I just wanted to thank Bethany for taking a ton of time out of her day to help us get some wonderful pictures of our sweet girls and for waiting so long with me while we waited for Earl to get back with his white shirt. Thank you Bethany. Your time and effort meant so much to us! My parents were able to look at the photos and they loved them. Some of my siblings haven't even been able to meet her yet because of sickness so they really appreciated them!
Things are going well with our sweet Ellie. She is getting closer to approaching 7 lbs now and it is crazy how fast she is gaining. Her eyes are tracking a little better all the time and this week her head rounded out a ton on her sides. Her little head is almost a perfect normal baby's head. I love the precious moments of her smiling while she sleeps and this week she laughed for a few seconds. It was such a fun moment! Emma helps all the time and she is so sweet with her. I got out myself for a time and went grocery shopping last night. It is the strangest thing to see two car seats in the back of our car. I am so grateful that Heavenly Father blessed us with a second child. And especially this little girl. She is perfect just the way she is! Thank you to everyone that has brought is gifts and meals to us. You all have helped us adjust so much easier to our new life. We love all of you!

We are home and doing well. Besides the exhaustion, our little family feels complete! We will try to put more pics up as soon as we can. Between Ellie and Emma we stay really busy. Earl and I made the choice to find our dogs new homes. This was probably one of the best decisions we have ever made. Our home is quiet and peaceful. It is much easier to keep clean and I can breathe a sigh of relief knowing that Ellie's incisions are being kept clean no matter where I put her. Thank you so much to all of those who came in and helped so much with getting our home ready for us! There are no words to tell all of you how grateful we are not to be worrying about that in this time of craziness. Ellie has many doctors and they are calling every day for more information and new orders for her care. She has a physical therapist once a week and a nurse that comes in 3 times a week. It is so strange and overwhelming to think that my little baby girl is a part of home health care. It is scary in many ways but it brings me comfort to know that she gets checked on so often. The NICU was a place where my worries were much calmer because of having nurses and machines watching over every part of her constantly. At home, we are now fully responsible and this gets so overwhelming at times. I always thought that I trusted in the Lord completely but have learned from this that I have a ways to go in order to let go and trust in Him. I get so worried that I will not have her for very long and it scares me so much. How grateful I am for a nurse that shares the same religious views as me. It was really good for me to just let my emotions get the better of me and visit with her about our Father in Heaven's plan. None of us ever know when it is our time to go. And if I just let go and let God be in charge (because he is anyway) I will be much more calmer. This is the part where our mortal lives get hard. You just love your family and your children so much that you can't bear to be separated from them for even a time. So my new goal every day as we go through this period is to just enjoy what I have every day and to not think about what the future holds. I have to be grateful for what I have now at this present time. I am so thankful to know that I have a Father in Heaven that loves me and is always watching over me no matter how hard it gets. I am glad to have the blessings of the gospel and the blessings of my husband's priesthood so I know that any of us can get a blessing of comfort whenever it is needed. Angels are watching over us and I hope it continues. Our family will be home bound for a few months. We are not allowed to do much of anything outside our home until this cold and flu season finishes. We will probably bless little Ellie in May if anyone needs to plan to be here ahead of time. Thank you for checking in on our family through the blog. It is incredible to think of the service and love that is out there for our little family. God bless every one of you! Hope all is well!

Ellie's Home!!!

I am sure Earl & Emily will post the details, but me and Debbie (Earl's sisters) got to go to Boise over the weekend and play with Emma until the blessed phone call to pick up Ellie from the hospital!!! We had a great time, and it got better when we reach Twin Falls and actually got to hold Ellie! She is even more beautiful than the pictures!!!
Here are a few pics from our trip:

Aunts Becky & Debbie enjoying Emma & Ellie.Ellie grabbed Emma's finger.
Two very tired cousins finally reaching Twin Falls from Boise.
Because they went wild in the hotel room, loved jumping back and forth between the beds and running from one end of the room to the other screamin. This is a cookie and movie break.
....after spending an hour or so at the pool!

Today's Progress

Today has been a pretty overwhelming day. Ellie is doing wonderful and therefore it is almost time to go home...YAY!...WOW!...SCARY!...EMOTIONAL ROLLER COASTER!...CAN WE REALLY DO THIS?...ARE YOU SURE SHE IS REALLY READY?...WE CAN'T WAIT TO COME HOME! So those are only a few of the emotions and thoughts we have had going through our heads in the last 24 hours. Ellie passed her car seat test with flying colors. She is also eating 2 oz every 3 to 4 hours so I can't imagine her not gaining weight with that appetite. Ellie has a really different personality than Emma did when she was a baby. Emma was so passive and didn't care much when we changed her diaper or how long it would take to get her fed. Ellie is absolutely opposite. She goes from zero to sixty in about 2 seconds! Her lungs are very well developed. You should hear her scream. It is absolutely nuts. This could take some getting used to. But with it all said, she is a keeper. Although we are going home soon, we will be keeping the blog going after getting home too. Ellie will not be allowed too many visitors throughout RSV season. So please call before coming. We have to take many precautions before allowing anyone to come in. We have been organizing her home care and Doctor appointments. This is an incredible feet in itself! We are preparing as much as possible and we are so grateful for our wonderful blessing that has come into our lives! Thanks everyone for your prayers and support and help! We could not have gone through this hospital stay witbout you! We know that our journey with this little one is only beginning and how grateful we are for eternal families! We will try to keep everyone posted as time goes. These next 2 days could be very busy. We will be putting new pics up too. One last request for all of you...Please add all of the other babies and families and parents that are in the NICU dealing with such incredible issues to your prayers. Some are progrssing slowly...some are getting better faster than others and some are going home to Him before all of us. This has been such an emotional time for so many here. Please say an extra prayer for those that we are leaving behind. We love you all!

Eating Progess

For babies to leave the NICU they have to meet 3 requirements which include: maintaining their own temperature, gaining weight, and taking in all food by mouth. Thus far Ellie has conquered keeping temperature and gaining weight so is just lacking the food intake. We have ventured to give her bottles and she likes those quite a bit. She has to intake full doses of her food by mouth for 24 hours which started at 10:00pm last night so that process has started. Emily has noticed that Ellie has been waking up 30 min before her feeding time ready to eat. One final test is the car seat test which is placing her in the car seat for 4 hrs and checking to see if her heart and respritory rate drop in that time period.

New Pictures

Ellie is a sucker for a binki. The binki has been helping her become stronger in sucking so her feedings will go better. It also is very good for her in particular because it helps her relax and stay calm while being stimulated.

We finally caught someone while they were wide awake this morning, so we took the opportunity to take some pictures. Even after taking this picture, her eyes have become more and more focused on things and it is so much fun to just sit and rock her back and forth while she stares into mom and dad's eyes.

Silly Expressions turn out to be factual...

Earl and I found out that some silly expressions people use to describe a behavioral moment they may have can actually be known as a medical condition. Our poor little Ellie is tounge-tied...literally. So everyone has a string-like cartilidge that runs from your bottom back area of your mouth underneath your toungue and it should run to the back area of the bottom of your toungue. Well Ellie has been trying really hard to nurse. She has been pretty successful a few times but she really gets frustrated with it and tuckers out pretty fast. We figured that she just needed more time to get used to it because of her prematurity. Well there is probably some truth in that, but our physical therapist also discovered that Ellie's toungue is being held down a bit (or a lot!) because her cartilidge runs from the back bottom area of her mouth almost to the tip frontal area of her toungue. No wonder she is struggling and frustrated with nursing. And the medical term for it is toungue-tied. This turns out to be more common than we know. In fact it may be genetic because one of Earl's sisters had it when she was small. Although, Ellie's is so bad that it affects how she eats and it will definitely intervene with her speech later on. Wow! The poor girl can't even put her toungue up to the top of her roof of her mouth. We also found out that she has no gag reflex. We will have to see what the NICU docs decide to do with these issues. Atleast we know that they should be able to surgically fix the toungue-tied problem since it has been pretty common for years. We shall see what happens there.
Sorry we have not posted any more info for a few days. It has been a crazy week so far. Ellie has graduated from an enclosed Giraffe bed to an open crib(or bassinet). She is now able to wear clothes and so far is keeping her body temp up on her own. Once in a while her temp is a tid-bit low but nothing an extra blanket can't fix. The nurse gave her a bottle of my milk for the first time last night and she did rather well with it. She is now up to full feeds (We will see how she handles it) and she is no longer on an I.V. She has made some incredible steps to getting her closer to go home. In fact, the only thing left for her to do is taking all of her food in orally. The only problem with that is it sometimes takes the longest to get there. So we are still not sure when we will be home but we are much closer than we were last week and that is a blessing. She is now laying flat on her back and her head is getting a little more round and normal looking all the time. Ellie is incredible. We will try to have some new pics up later today. Thanks again for all the prayers. We are truly feeling all your love and support! Thanks again for all of that! I hope that you are all doing well.
Signing out!
Emily and Earl

Emily's Post

Today has been an incredible day. Ellie has been very sleepy all day and it is just so much fun to hold her and watch her contentment. She has some great nurses. Her nurse this weekend is a sweet and wonderful woman. Her name is Julie. She not only takes care of her every medical need but she finds time to put cute little bows in Ellie's hair and makes sure her bed is made girly and fun-like every day. She has been so comforting! Ellie woke up this evening and decided to really try to nurse. My lactation consultant, Joan (I call her MY WOMAN) is incredible and with her help and Ellie's growing strength, our daughter had her first very successful feed tonight! We are hoping that she will continue to get to the point where she will be strong enough to nurse all the time! We have a very good chance of that happening! I love this little girl! What an incredible journey we are on and although there will be future times of stress and struggle, it is completely worth it! I thank my Father in Heaven for this opportunity to care for such a special child of God! How wonderful it is to feel so close to our Father in Heaven. So I know that most people just want to see pics so here we go:
Grandma is finally getting the chance to hold Ellie and there is no explanation for how excited Grandma Hunt gets to hold her! So, just for you, Grandpa Hunt, here is a pic to make you envy Grandma enough to get on the bus and get here so you can finally hold your new grandaughter!

We thought Aunt Rachel would enjoy an up-close picture for her to be able to give kisses to Ellie as much as she wants. Isn't she so beautiful! I think she has a lot of features just like her big sister Emma.

Had to get a picture of her very first bow in her hair!

This is our cabbage patch doll picture. She just looks so sweet in her little cacoon.

Today's New Progress

Ellie is still off the respirator and is still doing well on her own. Today was an experimental day to see how she would do with new things. As you can tell we tried holding her along with giving her a pacifier which she both took a liking to.


We went as far as to put milk on her pacifier and she went really went crazy so we tried breastfeeding which was a small success. Of course over time she will become a pro.

Another big change for us was having Emily graduate from the Hospital to moving across the street to the Ronald McDonald House. Emma is Modeling the lovely bench in front of the house. This place is amazing, I am surprised at how blessed this house has been by the charity of the community. I am very grateful for places like these and humbled in what great work as taken place here.

More Detailed Information

I feel that I have extended family and friends who are new to Ellie's condition and not sure what is going on, so I'll try to catch everyone up.

Discovering Ellie's condition:
At 18 weeks we discovered in the first ultrasound that her ventricles were enlarged. Simply put ventricles are a holding container for cerebrospinal fluid. This fluid is what we shall call "water" it circulates around the brain along with going down and back up the spinal cord. We needed to keep a very close eye on them to make sure they didn't get too large. As the ventricles continued to enlarge they can put pressure on her brain. So through Emily's pregnancy she went in quite regularly to measure ventricles. Through testing of why the ventricles were enlarged we discovered our baby has Spina Bifida. I would encourage you to google it, I have found out some pretty interesting articles explaining it. Very simply put part of her spinal cord didn't fully develop. Nerves on the spinal cord are a continuous communication train/chain fortunately her communication was disputed toward the end. The caboose of the train includes bowl and bladder control the next 5 cars are her leg control. The higher the number the more control she has so car 5 is feeling in the feet. This is where the doctors were guessing the deformity has occurred. Last week even though Ellie was 35 weeks her head was measuring to be the size of 39 weeks and the ventricles were enlarged enough to be concerned.

Ellie's B-day (1/26/10):
Yes we decided that her late grandmother's (Gail Hansen Petersen Emfield) birthday would be the appropriate day to have Ellie come. Our baby did absolutely fantastic that whole day. Her vitals were great and she was breathing all on her own. She impressed the doctors with making it 36 weeks in the womb and being a complete fighter when she came out. Because shew as doing so well it was appropriate to give her surgery the following day.

Surgery day (1/27/10):
For some background on the surgeries to be performed. First part of the surgery will be working on the deformity on her back. The deformity of the spinal cord is quite low on her back and a small opening which are both very good. It is a very intricate process closing up the opening on her back which was guessed to be 3 hours. Second part of the surgery is giving her a shunt in her head this is a small device designed to drain the fluid out of the ventricles. The ventricles enlarging was a slow process that gradually put pressure on her brain and to reverse the pressure will also have to be a slow process. The brain does not do very well with quick changes. It is also guessed to take 3 hours to complete this procedure. We were very happy our doctor did a very incredible job on our little baby. She handled 5.5 hours of very intense operation extremely well. Again this little fighter was breathing on her and was doing absolutely fantastic.

Recovery: Day one (1/28/10)
Emily and I checked on her early morning and she had been doing really well but was worn out. The first two days have been intense and I don't blame her for sleepy. Ellie had decided that she was a little tired and wanted to give the nurses excitement and would forget to breath once in a while. For safety and to give Ellie a little rest they have put her on a respirator for a little while. She actually breaths a fair bit on her own but she does need some assistance (she's only 2 days old give her a break). The pressures in her head have been decreasing and have been doing really well. We do have some concern with her legs she physically has nerve damage at car (lumbar) 5 possibly4 but at this point only showing feeling up to lumbar 3 and 2 which is hip level. All we can do is wait to see if it is nerves, muscle development, part of the pressures of the brain or something else. Time will tell so we just have to wait and see.

Recovery: Day two (1/29/10)
Ellie has still been needing some breathing assistance we still don't blame her for being on the tired side. We are waiting for her to show us that she will continue to breath on her own. We are also still waiting for pressure in her head to still go down. There are a number of other tests we are needing to complete which we won't be able to until Monday. These tests will need her to lay on her back which she is unable to due to her back surgery. We are so very proud of her and can't wait to see what tomorrow brings. We all want everything fixed right away but in the baby world it unfortunately is different and takes time one day can make a big difference, so we have to see what tomorrow brings. We love you and can't say thank you enough for all that you do and for your prayers.