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.

Quick Update

Ellie has been a little on the tired side today. This morning was her first minor set-back. She has been fighting so hard that she decided to take a break for a bit! She is on a respirator because of some sleep apnea spells. This can be typical for a little girl with two neurosurgeries in one day and for a major change in brain fluid pressures. Time will tell when she will be breathing without assistance again, but the doctors are not concerned. I think she is just needing some attention and a little break. Her head size has gone doown 2 cm and she loves to squeeze our fingers. Her surgeries went very well yesterday and she is continuing to improve in other ways. It is really too soon to know anything factual about her conditions. Time and patience are the doctors answers right now and she is in very good hands. We are loving her more every minute! Stay tuned for before and after pics. Earl will try to post some more tomorrow. We love all of you! Thanks for your support!

Say hello to Ellie

This is Ellie early this morning (1/27/10) we were saying hello and getting her ready to go to surgery this morning.

Ellie also discovered mommy's finger and held on for a little while. I also just wanted to show you how small her hands are.

She was the life of the party yesterday (1/26/10), and guilty enough to get some prints taken for legality purposes. We will keep posting as we keep getting updates ourselves. Much love to all of you and thank you for all the prayers and care.

Congratulations on the new addition

I'm so glad she has arrived. I am sure that life will be a challenge for awhile but what a relief to know that she is safely here and that you can now start to get to know her. My prayers and thoughts are with all of you. Love you.
Deb

Tomorrow's Plan

It is still too early to draw any conclusions of her permanent condition. Although some assessments have been made to hold to the doctors suspicions. We did get confirmation that she will have her back closed and have the shunt inserted at 7:30 in the morning. We will find more answers as time passes. Tomorrow will always bring one more answer with a question. We still have to remember she is a month early and still has a lot of developing to do.

Happy Birthday Ellie

Ellie was born at 10:21this morning. She weighs 5 pounds 6 ounces and is just over 18 inches long. We were excited to see her breathing on her own. There are a few questions will hopefully get from the neurosurgeon this afternoon.

Love you and praying for you guys! Anxious to see this beautiful little girl! :) Love Power and Stacie

Prayers, Hugs, and Love to you all!!

From our family to yours we send our thoughts and prayers to all of you!

Well Earl and I are trying to figure out how all of this works. I apologize to all of you because I accidentally sent you the wrong link. We will try to fix it, but if for some reason we mess it up so you can't get into the blog, let us know through e-mail or phone. We are trying to figure this out before Tuesday. All of you guys should be able to get info on her condition and make comments if you would like. Thanks for being understanding and flexible. I just don't know enough about computer blogs, I guess.

I want to thank my dear husband for setting this up for us. I think that this blog will be very therapeutic for all of us involved. Especially in the next week or two to come when things could be so critical. This will also help us with less phone calls to make. I love my family and I am so excited to meet Ellie! If one of us can figure out how to post pics on here, we will definitely do that too! Only 4 days left and on goes the countdown!

The Honor of the first post

So Emily called me from Boise and let me know that Ellie has a birthday now. It is officially going to be on Jan 26th in the year 2010 at 2:30 pm. I am also offically opening this site to comments from the peanut gallery. We will also be posting pictures soon.