Ella's Journey

Monday, May 14, 2012

Mother's Day 2012

Mother's Day 2010

Mother's Day 2011

Mother's Day 2012

I had a wonderful day celebrating being a mother! Truly being a mother is so amazing, better then I could have ever imagined. To have somebody love you, need you, want you, it's just wonderful! Ella is so big and she is a dream come true for this momma's heart. I never knew what my journey to motherhood would look like, I never knew what I would face as a mother. The fear of losing the little girl who really made my life feel worth while. Being Ella's mommy is perfect. The fear and pain that comes with being a heart mom is just a hint of this life compared to the JOY that radiates from her. Truly, I can honestly say, with my whole heart, that if I lose her, every single moment I would have gotten to spend with her would be worth it. I can't say what the rest of my life would look like, but no matter the future I am honored and blessed to be Ella Dawn's mommy. She is happy 99% of the time, she is ornery enough to be adorable and adventures and obedient enough to earn my trust. She loves outside and all things girly. My wish as her mother is that I will help her reach her potential and help her to face this life that she has been given with an attitude of gratefulness and determination. Where she doesn't feel afraid to live, where she isn't afraid to die. I wish for her to know everyday is a gift, she is not better or worse then those who have a whole heart. She is loved by her maker, and He loves her dearly. The love I have the privilege of feeling towards my sweet Ella helps me trust God with her and my future. If He truly loves me the way the Bible says He does then the safest place we can ever be is in His will. I am human and I would die before I would purposely allow harm near Ella, how much more capable of Love is The perfect God who knows and created all? How grateful I am for that knowledge. Even though I will never grasp the depth of His love, just knowing it's more then my love for Ella let's me know it's enough. I hope you all had a wonderful mother's day celebrating! Never take being a mother for granted, it is a wonderful GIFT! Everyday should be lived to the fullest, make time to love on the little ones in your life, being a mommy certainly isn't the most glamorous job, and for Ella and I it is certainly not a job where I get to get out often, but the days are flying by and for me I love being a mommy every moment of everyday. Every sacrifice, every day that you spend in pj's, every time you miss a full nights sleep, every time you change a diaper, every time you clean up the same mess for the 5th time the same day, every time you read the favorite book again, it's all worth it, it's all a blessing, it's all important. I have seen too many mommy's with empty arms as the days were cut short. As my heart aches with each new loss I see nearly weekly it drives me to love Ella better. Not through fear of the future, but simply realizing the gift of today. Happy Mother's Day, may you Love deeper, this year as you enjoy the blessing of Motherhood!

Special Happy Mother's Day to My mom, you taught me how to be strong when life is hard. You are the only person that I have ever trusted to care for Ella, you listen when I need to cry through the fear of loss. You are the perfect example of letting go and yet still being there. You have been a rock to our whole family. Thank you for teaching me of God's love, for teaching me to love my daughter, thank you for homeschooling me, thank you for equipping me with the skills I have needed to survive since Dec. 20th 2009 when my life changed forever. Thank you for sitting with me when we thought I lost Ella to miscarriage, thank you for sitting with me when I was too sick to live at home, thank you for caring for me in the hospital stays, thank you for encouraging me to keep going when I was so weak I could hardly stand, thank you for coming with me and hearing the words "hypoplastic left heart syndrome" and "open heart surgeries", thank you for delivering the news that she only had a 20% chance to survive when I was too upset to make any calls, Thank you for coming to Dallas to help us for as long as we needed, thank you for being there when Ella entered the world, thank you for sitting with me when Jon and Ella had to leave for her surgery, thank you for taking the first picture of Ella's open eyes for me to see, thank you for helping me through the hardest things I have ever had to face. Thank you for your constant sacrifices, thank you for being the perfect "nana" You mean the world to Jon, Ella, and I. We love you dearly, you are our hero!

Friday, May 4, 2012

moments

Ella can make me smile and laugh and cry tears of joy and sadness all at the same time. I have been reading up on where Ella should be developmentally according to her age, I like to do that since she doesn't have normal pediatrician visits. I want to make sure I'm teaching her what she needs to learn. Usually she is right on schedule and even occasionally advanced. This time she was advanced in speech and a few other things that have to do with how much she knows, but physically she is a bit "behind". For instance it says she should be able to undress and dress by herself, eat with a spoon and fork, go up and down stairs alone, run. While she can go upstairs with help, going down seems to scare her. She can eat with a fork with help, but a spoon is just to messy since she is still eating thin baby food. I guess that brings up the question "why is she still eating thin baby food?" Well Ella still deals with a slight oral aversion and while she can eat several solids, she can not eat enough for it to be her main nutrition. Right now gaining weight for her next surgery is important, so we will continue giving her whatever she needs to pack on the pounds! I'm not going to worry about it, just going to keep doing the best I can to help her learn and grow as she develops new skills. Ella and I are getting more used to the medical alert bracelet. In fact she has asked to put it on several times and she has had it on for just about 24 hours straight as I type! She has been adjusting way faster then I thought she would. I see it and I have caught myself with a tendency to kinda look away or feel sadness and I choose to look and smile because she is my miracle... a bracelet does not define her. I guess most of you would think her scars would be harder to see, sometimes they are. One scar in particular makes me tear up nearly every time I see it. It's not the big one down the chest or the little ones all over her belly from drain tubes, it's not the ones in her groin area, it is the little line on her wrist. It was cut open with a scalpel for a necessary access. They couldn't get the line in and had to cut her, for some reason that scar makes me ache. I can't really explain it. I guess I don't have to. I was sitting the other day thinking about some of the other dear sweet heart babies that are struggling, and all the sudden I remembered the time that I set holding my severely sick baby when she was less then two weeks old (I don't remember the exact day it was, when you are in the hospital 24/7 for nearly 30 days, time and dates seem to disappear) I was holding her when all of the sudden she crashed she would have died without instant assistance. Their wasn't even time to put her back in her bed, all the nurses, and respiratory therapist worked on her, they had to bag her (help her breathing even though she was already on the ventilator) My heart stopped and I sat helpless looking at my baby as her life seemed to be fading out of her body. tears streaming down my face I was paralyzed. Nurses tried giving me encouraging words as they worked so quickly, "she's going to be okay mom" "we're getting her, she's coming back up". They are trained to be fast and calm, I remember feeling like Ella didn't like me, that maybe I wasn't a comfort to her. The very first time I got to go see my baby at her hospital the day after she was born, I remember she cried and even though it was a silent cry, because the ventilator was through her vocal cords keeping her from the ability to actually make any noise. Still her sweet perfect eyebrows wrinkled up and her whispered cries were very obvious. I felt like she was upset that I wasn't with her, I thought that since I didn't get to hold her that she didn't know me. Jon had stood by her side the entire night and when he walked up to her and gently patted her she calmed right down. I was devastated that I couldn't fix her cries. When she crashed in my arms later the feelings that I was already dealing with all came down on me and I felt like even after 9 months in my womb she still didn't know me. I remember feeling guilty that I didn't feel as strong of a connection that I had felt while I was pregnant it almost felt like she was a different baby. My pastor's wife, Jamy, told me that it takes some time and that I would feel that gradually. She was so right, it took a very short time before I knew that I had a connection with Ella and motherly instinct enough to drive the nurses crazy with questions and "demands" on how Ella was cared for. I hadn't thought about that moment in quite awhile, I have a feeling that more and more of these memories will slowly creep back into my memories as I allow them in. I still can't believe we have to go back... again. Just doesn't seem like I can do it, but I will. I will because every joy we experience is because of her previous surgeries and the future Joys we will experience as we watch her grow up will be because of the next surgery.

This picture was the exact moment she was placed in my arms for the first time (not the time she crashed) It all hit me at once that she was mine!

Tuesday, May 1, 2012

Father's Day contest!

Hey friends, I have entered Jon in a Father's Day contest. If you have followed Ella's journey you will have seen the amazing sacrifice and devotion he has given for Ella! He is our hero, the rock that keeps us steady. If you have time PLEASE vote for him by following this link http://www.ivillage.com/hot-dads-contest-0/6-b-435770#450073 He is the one with blonde hair on the swing with Ella leaning on his chest. The picture is titled true love beyond his years. Not many dad's in their 20's would sacrificially love like he has! Thank you friends! If you would be willing to share this with others who follow Ella's journey and ask them to vote too that would be great! Thank you all for your love and support. I hope this doesn't offend anyone that I am asking this, please do not feel like you have to vote, this is just a little something I want to do to show him how proud I am of him as a daddy! <3

Saturday, April 28, 2012

Life

Life is good, Ella is amazing. Everyday brings new words and facial expressions, new abilities as she discovers more talents. Ella is getting so big, I see her everyday and if feels like she is bigger every time I see her.. Ella is 34 1/2 inches tall and weighs 25 lbs. she is 20 months. According to the old wives tale if you double a child's height when they turn 2 that is roughly the height they will be full grown. Ella still has 4 months to grow before she turns two and she is already nearly 3 ft.!! Oh my, I may have a 6ft. daughter some day :) She will be tall and beautiful! I am so grateful that she is growing so well, eating was a bit of a challenge in the beginning and still is from time to time, but over all she is doing fabulous. We purchased Ella's first medical alert bracelet. When I went online to order it, I felt sad that they had to make medical alert bracelets in a toddler size it didn't seem fair. When it came in I looked at it and didn't think it would fit it seemed so tiny, but it fit perfectly. It looks so small, it breaks my heart. It's not like I can ever forget about her heart defect, but something about having to wear a bracelet all the time feels like I'm branding her or something... like she is "tagged". It's hard to see it on her tiny yet chubby wrist. I am taking it slow, and easing her into wearing it. We are starting with wearing it when we go "out", not that we really go out much, but we like to take drives around town just to get out of the house sometimes and she would need it if we got in an accident. She doesn't like it anymore then I do, she will play with it, but if I try to put it on her wrist she cries. I have to remind myself that it doesn't define her just like her scars don't define her. I have to remember that even if their were no outward signs like blue fingers, toes, and lips, her heart would still not be whole and it would still be broken. This is life, it is going to be normal for us someday. At some point down the road maybe a tiny medical alert bracelet won't bring tears to my eyes and sadness in my heart, maybe someday I'll be better at this whole heart mom thing. I have to try, to continue to not only except it but to embrace it. I have to be able to face it and not avoid it, other people in my life and in Ella's life will have the luxury of walking away if it is too overwhelming, they won't have to stay if they feel uncomfortable. Ella, Jon and I will never have one moment for the rest of our lives that this isn't in the forefront of our minds. I have to be strong because I want Ella to be strong. I want her to feel normal, I want her to see her medical alert bracelet and think of it as a safety device, nothing more. I want her to get excited to order a new fun color, not cry that she has to wear one. I'm not going to pretend to know what she will feel, and I expect that she will have many many days that she feels sad, or angry, because of her limitations/daily medications etc. but I'm going to do everything in my power to help her approach life with the attitude that life is worth LIVING, that she has a second chance to live her life. I want more then anything for her to live without constant fear and feeling sorry for herself, I want her to know that she is STRONG. She has come so far and beaten so many odds, she is a fighter, a survivor!

Tuesday, April 24, 2012

Monday, April 9, 2012

Easter 2012

Ella's Easter Basket!

She is serious when it comes to chocolate bunnies!

My sweet girl!

Hugging her bunny after biting off it's head!

Egg hunt!

It was a great day just the three of us! This Easter I find myself so incredibly thankful for the gift given to us all! I think about the sorrow Mary must have felt when Jesus died, and what JOY must have consumed her when 3 days later he AROSE!! happy resurrection day! Today is Ella's 20 month birthday!!!! What a wonderful life I have being her mommy! She is such a wonderful little girl. I know I make it sound to good to be true, but it is just that amazing! Ella is talking so much now, She walked up to me a few days ago and started touching my face and said "Momma beautiful, Momma beautiful" Then she walked away saying "happy, happy, happy," Then she sat down and picked up her Christmas story book and "read" it saying "Jesus, Jesus, Jesus"! She LOVES to say "prayers" at dinner and bedtime, She often says "Ella beautiful" and she laughs at nothing and makes us laugh too! She is very encouraging and likes to say "Good Job" and "Yay" She is showing good manners and says "bless you" when we sneeze she says "please" and "thank you". She says "No thank you" and "all done" when she is finished. She goes to bed without a fuss, she eats good, she plays alone well, she doesn't do something after she knows it is a "no, no" She loves to watch "Boz" in the mornings and she likes to "snuggle snuggle" She is constantly giving unprompted hugs to Jon and I! She will just walk up and wrap her arms around our legs and squeeze tight and say "ohhhhhhh" It melts my heart every.single.time. She said her first sentence last week, She came up and gave me a hug, and while hugging me she said "I love you so much"! It was so sweet, brought tears to my eyes! She really is quite a hugger, she hugs everything, stickers, chocolate, toys, hats, books... anything. She is so sweet! She is as perfect as they come. No I'm not making this up. She is AMAZING! I say it a million times a day, Jon and I both talk about how unreal she is at least 10 times a day! On her fussy days, she is smiling 90% of the day. She rarely cry's at all. I could go on forever, but I have a feeling no matter what I would say it would never accurately describe how wonderful my miracle is! I hope you all had a wonderful Resurrection day!
Remember to check our youtube channel for new videos of our Ella! "amyladawn"