10 Months (on June 9th) with our sweet sunshine!

Thankful... thankful is the word to describe how my heart is feeling. Humbled by His grace I sit here and write about the last 10 months. The 10 months we weren't supposed to have, the 10 months that have brought me more joy and more pain then I have ever felt in my whole life. Ella Dawn has forever changed me. I will NEVER be the same. She makes me love deeper, cherish the little moments more, and she makes me want to be a better person. Sometimes I wonder to myself if God really knew what He was doing when He made me Ella's momma, I wondered if I was really the best momma out there for her... surely not I thought to myself nearly every day. But I am convinced that she is the BEST daughter for me! Whether she was sent here for me to change her life, or for her to change mine I'm not sure, but I only hope that one day she will know how very much I love her. Some days this journey seems possible, I just feel like this is the path, okay let's do this. Other times it is heartbreakingly unbearable. Death is all around us in the heart world, and even though Ella is excelling she is always at risk, her heart is working twice as hard as all of ours. Sometimes when I look into my sweet sunshine's eyes my own eyes swell with tears as I thank the Lord for another day. This 10 months has had a lot of pain, but we have also had so many incredible moments. In the last 10 months Ella took her first breath, we touched her hands and saw her sweet face for the first time, we looked into each others eyes for the first time, Ella smiled for the first time, we held our baby for the first time, Ella learned to breath without oxygen, we took our baby home from the hospital, Ella took her first car ride, Ella slept in her crib, she wore her first outfit, she ate from a bottle, she ate baby food, she went to church for the first time, she was publicly dedicated to Jesus, she has for the most part continuously gained weight, Ella learned to roll over, she learned to sit up, she learned to stand, she learned to sleep through the night, she learned to blow a kiss, she learned how to dance, she learned how to say "Dadda" and "Momma", she learned how to say all done in sign language, she had her first bite of ice cream and sno cone, she has learned to eat a solid without throwing up, she has gone through 5 separate surgeries (3 open heart 2 cath) infection free, she had her first Thanksgiving Christmas New Years Valentines Day and Easter, she learned how to drink from a sippy cup,she learned how to feed herself with a spoon, she learned how to drink from a straw, she had her first week without a doctor visit, she had her first pigtails, she went "swimming" for the first time, she went on her first walk, she had her first picnic, she got her first two teeth, she had her first kisses and hugs, she heard "I love you" thousands of times, she made me and daddy cry tears of joy, her diaphragm was healed, She has defeated her 20% survival chance, She has daily made me smile, wow... tears flowing down an abundantly grateful momma's face right now. Thank you Jesus for an incredible 10 months of firsts of many more to come, of LIFE!


                                                  Day one... a precious long awaited meeting

Getting to hold her for the first time

her first outfit

first bottle

breathing all on her own!!

leaving the hospital one month old!

leaving Dallas and heading HOME!

in her crib for the first time!

first Thanksgiving

first Christmas

first Valentine's Day

first picnic

first baby food

learning to roll

first pony tail

first Easter

standing

Baby Dedication at Church

First pigtails and first 2 teeth!

                                                             Learning to eat by herself!

                            Happy 10 months Ella Dawn, what an incredible 10 months it has been! :)

Update... because it's been awhile :)

Well our sweet sunshine continues to grow stronger everyday! We are so in love with her spunky and sweet personality! We see more and more faces and hear more sounds everyday! I have no idea where she gets all her crazy faces ;)!!! Ella has just cut her second tooth and it's so tiny and cute (of course)! She is just starting to rock back and forth on her hands and knees! Also she is getting more balance when we practice her standing! I don't know what she weighs right now, probably around 17-18 pounds or so! She is eating much better, she still struggles quite a bit with any texture. She gags/throws up from time to time when she eats her solids, but she sure is improving! Ella has been sleeping great! She is still pretty skinny nearly 10 months and still wearing size 2 diapers with PLENTY of space to grow! She also is still in size 1 shoes! She is growing tall though, who would have thought she was going to be tall and skinny ;) Her hair is turning lighter everyday. Her tips are still very dark but the roots are getting quite light. I really don't know what else to say in the update, she is perfect!!! :) If you have any questions you would like me to address here feel free to leave them in the comments, and if possible I will answer them! We ask that you continue to pray for Ella, even though she is doing amazing, she is still of course ALWAYS at risk.

I follow a blog of a sweet baby named Tripp Roth. His blog is http://randycourtneytripproth.blogspot.com/ In one of His mom's recent posts, she touched on the subject of germs, after learning that her son was fighting an infection. I thought she said it perfectly! She put it this way:
 "I made all new signs- for the back door, over the sink, in the bathroom.  I'm even going to start asking people to take off their shoes when they come in.  I mean, think about it, your shoes are the dirtiest, most disgusting things.  No telling where you've stepped or what you've stepped in.  I should've done that a long time ago, I know.  But it just seems like some people still don't get it.  I know that I wouldn't want the bug I pass on to Tripp's open sore to get into his bloodstream and cause him to be in the hospital.  You know?? ... But I guess not everyone thinks like that.  So I'm here to remind them:)  And it doesn't matter if you just left home and took a shower or if you washed your hands before you left the house... did you touch the door handle? or your steering wheel? or the buttons on your car radio???  All of those places have germs.  And when you come out of the bathroom... I mean REALLY- does that even have to be explained??  So before you touch my little pumpkin's toys... SCRUB HARD."  


Tripp has a very different circumstance then Ella, but the fact that germs must stay away remain the same! It is just so hard when people do not take Ella's condition seriously, mostly because she looks so healthy on the outside. When I read Tripp's mommy's frustrations of people not taking necessary precautions I immediately felt for her. Having to watch your child go through the difficult path life has given them is hard enough. Altering your life more then you ever thought possible to keep them healthy, safe, and as pain free as possible. Then to have someone who either unknowingly or worse knowingly disregards any boundaries that have been set in place to keep Ella safe, truly is so very painful. Look at the pic. above and remember what we are fighting for! I guess some people will never understand unless they experience the fear in a parent's heart raising a child fighting for their life...


Please continue to keep all of Ella's heart friends in your prayers as well as Tripp the baby in the link above that has "EB" Thank you friends for your faithful prayers! We can't thank you enough for all the kind words and gifts that have been sent our way! God is SO good!

videos to make you smile!

So I put up 2 video links, but apparently they were set on "private" and could not be viewed :(  So I tried to post them in the side bar to the right! Let me know if they work this time! They are pretty cute! :)

Pictures!

We had the AWESOME privilege of publicly dedicating Ella at church on Mother's Day! Usually we can't take Ella out of her covered stroller at church because of germs, but we made sure the people on either side of us were very healthy and we "unveiled" Ella for all to see! It was so wonderful to show her off to so many who have diligently prayed for her! She hadn't had her nap because of the time and therefore was a bit ornery :) She was so loud, but somehow I don't think anyone minded! We are so blessed to have such an incredible church family!

my family of three!

                                                                          praying!

                                                                      me and my girl!

                                                                  Daddy and his princess!

                                              thank you all for continuing to pray for miss Ella!

Ella's First tooth!!!

 About a week ago I got some very exciting news!! I FINALLY know EXACTLY how much Ella weighed and how long she was when she was born!!! For some strange reason Texas doesn't put that information on the birth certificate, then when I called the hospital to ask they told me it was private information and they couldn't tell me! I was shocked, and nearly in tears after pleading with them and explaining that the reason I hadn't got the information right when she was born like every other mother was because she had been whisked into surgery right away. I knew they had weighed her because they had to know her weight to give her the right amount of sedation medication. I said "but I'm her mom, I have her social, my social,... please I just want to know her weight and height!" "I'm sorry mam, that is private information... etc." ARG!!! "So you're telling me that this information that isn't even private that every mother is told right away you can't tell me?!" "Yes mam, that's what I'm saying" "I really don't understand, isn't there anyway I can get the information??" After a long debate... " Well you can request a form, fill it out, mail it to medical records, and there is a fee." " I have to   fill out a form, mail it in, and pay to find out her weight and length?" "Yes mam" "Are you serious?!" "Well your pediatrician may have that information on file." "So I DO have another option?" "You can ask."  Well I did try, I called the front desk of the pediatrician and as I suspected they didn't have that information on file, and they could only request it from medical records if I came in person and showed them my ID. So the next time Ella had an appointment I asked the doctor and she told me she would get it!!! About a week later as I was walking through a store, my phone rang,  it was the nurse calling to give me the information I had requested! I grabbed a pen and then, I heard for the first time, what I had been waiting to hear.  " 7lbs 4oz. 19 3/4 inches long"  I felt like I had just been given a moment that I had missed! I was beaming with pride and nearly burst into tears right there! After such effort and 8 1/2 months I thought I may never know, but God is so good! I couldn't believe it! So although this information may seem small, I feel like it is such a great gift to know! Never take the little things for granted!

Also, I have a picture of Ella's first tooth! It's tiny but it's SO cute!

Then...Now

Mother's Day 2010

Mother's Day 2011

                                                                    Thank you Jesus!!!!
                                  Had to laugh to keep from crying today, oh how very very much I love her!

Mother's Day / Ella turns 9 months!

So much flying through my head these last few days! Mothers day is just around the corner as well as is Ella's 9 month birthday! Also plans for for Ella's first birthday party are in full swing! Crazy isn't it?! Ella has just seemed to grow up so much in the last few days! She has OFFICIALLY...... FINALLY cut her first tooth! Although she is not crawling or pulling up yet, she (with assistance) can stand up! She is learning to stand up in her exersaucer too!! She is sooooo much fun!!!!! All day long I'm just like "this is RIDICULOUS! I love her SOOOO MUCH!!" She wakes up at night from time to time for her passy or a drink from her sippy cup, but for the most part she sleeps great! I really like it when she sleeps 12 hours solid multiple nights in a row, it makes me feel so rested! Last mothers day was my first mothers day! I was 6 months pregnant and SICK. I remember wondering if it would be the only mothers day I would get to celebrate. Here I am a year later feeling so blessed, wow, I'm a MOMMY!!!! I LOVE IT! Many times I have thoughts about what I would do if Ella was to die, wondering if I would really be able to keep going. I usually try to remind myself that God is Good, that He alone will meet all of my needs, that everything He allows He works together for good. When that answer isn't good enough for the painful thoughts, I simply say to myself, the Lord hasn't given me the grace to walk through that because He hasn't asked me to walk through that, If someday I must "walk through the valley of the shadow of death" I can't imagine, but I KNOW He will walk with me. As I felt the sting of pain even with the thought of losing her, I began to think of all the mothers that have lost a child. How very hard that must be especially on mothers day, I began to pray for all the mothers that I know who have experienced loss. I prayed for the pain they must be feeling, I prayed for peace. You see I know a lot of people who have lost children, and it breaks my heart. This situation I have found myself in has opened my eyes to so much suffering, I'm not sure if I was naive or just selfish before, but I had know idea how much suffering and loss there is in this world. I am grateful that my eyes have been opened, yet sad at the reality that is life. So to all the moms that have lost a child, this mother's day know that you are being lifted up in prayer. Everyday has such meaning when I realize all I have to live for! No life is worthless, every life makes an impact on the world. I may be home most everyday all day, I may have very limited contact with others, but I am making a difference in my husband's life and in my daughters life. I have no doubt that not one moment of caring for Ella is a waste, because I KNOW the Lord will use her in great ways! It is my honor to love and care for her. The Lord choose me to be her momma, and even though I feel so insignificant to fill my roll, I remember that He has a plan! I hope I can be half the mom to Ella that my mom has been to me, Love you Momma!!! I am really looking forward to celebrating mother's day this year, knowing that everyday is a gift and that being a mother is truly the greatest honor I have ever been given! Happy mothers day!

To my sweet sunshine,
Ella Dawn you are such a joy, you bring a whole new light to life! You are strong, you are a fighter, you are a conqueror, and I am so proud of who you are becoming! You are almost 9 months old, and although it seems like it has flown by it also feels like you have been here forever! Everyday you bring so many smiles into our home, you remind us that God is real, that miracles still happen, that prayer works! You are growing and learning, you are the best baby I have ever seen! Truly I am honored to call you my daughter. I pray you continue to grow more everyday, that your heart will keep beating strong, that you will know how very much I love you, and that you will feel God in your life. Jesus will ALWAYS be with you my Ella. Happy 9th month birthday, I love you forever like you for always
~ momma

He is RISEN!

Christ the Lord is risen today! Hallelujah!! As a christian this is truly an incredible holiday! This is the day we celebrate Jesus rising from the dead 3 days after His Crucifixion!!!! What an amazing gift!

This was Ella's first Easter and even though I always want her to know the REAL reason we celebrate, we still had some fun with egg hunts and bunny rabbits! :) Here are some pics. to show off her first Easter!

We had a great day together, we just sat around in comfy clothes, watched Ella's new veggie tales and some of my "I Love Lucy" DVDs. We had a big pot of homemade chili to warm us on this stormy day. It hasn't stopped raining all day, we even had hail a time or two! Yet as usual Ella made it feel like a sunshine day :)

prayer requests!

Well friends although Ella is doing very well, we have just discovered we may have a new hurdle to jump with her eating. She does well with milk and stage 1 or 2 baby food, but she has a STRONG oral aversion to anything with texture. At first I just thought she didn't like fruit puffs, so after some friends suggested Cheetos and her pediatrician suggested the same we gave that a try still the same reaction gaging/vomiting. Of course being on a ventilator 3 times we knew this may be a problem with her eating, but since she had been doing so well we felt like we may have dodged that bullet. So this seems as though it may be a long road and we may consider speech therapy (they work with helping babies with oral aversion) but in the mean time I ask that you be lifting her up in prayer as she endures such sever anxiety. I also ask that you pray for wisdom for Jon and I as we enter this new journey with our heart baby. We know this life will be full of new hurdles and we can't even express how comforting it is to know so many of you are lifting Ella and us up in prayer! Also on a side note Ella and I have caught a mild stomach bug :( Not sure if it really is mild or if it's about to hit hard, we are praying for the first! This is Ella's first time to be "sick" and although so far it isn't hardly bad enough to mention, it is scary. Mostly because we see the results of us starting to let the outside world in or rather us venturing out into the outside world, and well quite frankly it's hard!!! On another side note, Ella has gotten so much more mobile lately, meaning she is rolling all over the place, she also is starting to repeat the sign language for "all done", and she waves bye bye!... and... SHE SAYS "MOMMA"!!! I had to wait 8 months, but it was worth it :) Anyway that's it for tonight, thank you all so much for praying... these requests may seem small to some, but they are so important to us!

P.S.
As I'm typing this I can hear our little sunshine over the monitor, she is in her crib making the sweetest sounds! Just thought you'd like to know! :)

Update on Doctors visit!

Ella had her pediatrician appointment on Tues, and she is getting caught up on her immunizations :( So she had to get a shot, she was so brave! I was wondering how she was doing on just "normal" baby things, so it was good to get up to speed on what she should be doing and eating! I was relieved to know that we are doing almost everything just as we should be!!! Big sigh of relief for this first time momma! She is small for her age but she is following a growth curve so they aren't concerned. Also it is common for heart babies to be small anyway. She is just over 8 months and she is weighing 16 lbs. 3oz. and she is 28 in. long! Due to her 3 hospital stays, and all her recovery time she is expected to be set back with her development (crawling, walking etc.), even though her mental state is normal. So her doctor asked all the questions concerning her current abilities and to our surprise she was completely on track on one category, and she was just under normal for her age on all of the others! It was a great report!!!! The doctor was VERY pleased and so were we! Then today Ella had her cardiology appointment and she had great sats, great blood pressure, great EKG, great echo cardiogram, and we don't have to go back for 4 MONTHS!!! Yahoooo! They said to still be cautious with her because we still want her to stay as healthy as possible, but as far as her heart health all is great!  Now we just have to do our part to keep it that way! Thank you for your continued prayers for our sweet Ella Dawn!!!

Ella's heart friends:

Please be praying for Charlotte http://tousey.wordpress.com/  , she had her last open heart surgery today (this will be Ella's next surgery)

Also Please keep miss Emma http://www.emmajanae.blogspot.com/ in your prayers as well, she is still waiting on her heart transplant, but she is doing so much better then expected in the waiting process!!

Happy 8 months Ella Dawn!!!!

Wow 8 months... how did that happen?!? Regardless of how fast it went by, it has been FILLED with countless sweet memories! Ella is doing remarkable, she is off oxygen and is showing no signs of any complications! She is on aspirin (thins blood to help heart function) , enalapril (blood pressure) , prevacid (stomach ulcer) , and Maalox (acid reducer). She is not even wearing her heart monitor every night anymore!!!! That is exciting because it is a step forward, but scary because we don't have an alarm that will go off if something goes wrong. It hadn't sounded in several nights but being able to glance down the hall from my bed and see her heartbeat and her heart rate and her oxygen number somehow gave me peace of mind. I guess I can't always have her on a monitor... so we have to Trust. Trust that she will be ok, trust that God will wake us if their is a problem, trust that this is a good step!

I want to ask you all to keep this family in your prayers tonight http://reflectionsbykrista.blogspot.com/ This little girl has HLHS. She is also 8 months old and has been in the hospital since she was born waiting on a heart transplant... as of 4am this morning a heart has been donated to her! I cried as I read this I was so happy for this family, but I also cried because I was sad for the family that lost their baby today. I was moved by their generosity to donate their sweet babies heart, knowing that one day we may be waiting on a heart and the gift of a life for a life. Please pray for the two families involved in this situation.

Well here are a few pics. to comemorate 8 months of the unbeliveable blessing that the Lord has givin us!