Tuesday, May 22, 2012

Great report!

I just have to start this post with a huge PRAISE THE LORD! Ella had her cardiology appointment yesterday. It was the first appointment we have had in 6 months,  which is the longest we have ever gone between appointments by a few months! We heard such wonderful news! Ella is "doing better then any hypoplast at this stage that he's seen!" Giant squeeeeeel! This is amazing because he is the most experienced cardiologist in Oklahoma and Ella has a complicated case that makes her higher risk!

Also our sweet sunshine weighs 27 1/2 lbs. and is 33in tall!!!!!!!!!!!!!! That is in the 80th percentile!!! He told us " heart babies are usually small babies, we just don't see babies here in the 80th percentile!" The whole appointment was filled with "guys she looks just great" and "I mean really fantastic".

Not only is Ella in the 80th percentile of weight and height, but she has done this all by mouth, she has only had the feeding tube after the norwood and glenn for recovery!! Most of these sweet babies struggle with eating so much that they have to have most of, if not all, of their feeds by tube. We have been so very very thankful for this gift!

 Also, Ella's oxygen  had been in the low 80s, which is just fine, but lately on our home monitor she has been upper mid 80s. Yesterday when they checked her she was staying right around 88-89 and even hit 90!!!!!!!!!We are amazed and humbled by her AMAZING journey!!

Ella usually has SEVERE anxiety with all of her appointments, I mean literally shaking badly and full blown anxiety attack. Yesterday when we walked into the room where she is to be weighed /measured/ blood pressure checked/ oxygen/ heart rate, we braced ourselves for the usual melt down and Ella surprised us all by happily stepping on the scale and standing still with a slight smile, we moved on to have her stand against the wall for her height where she stood with slight concern while the man lowerd a board on her head but still no tears or "all done's", then we moved on the checking her oxygen, thinking to myself "this one shouldn't be too bad since we do this at home all the time", then I saw that they had a big plastic clip to put on her finger verses the small soft cloth that wraps around her fingertip at home. I thought "oh boy this isn't going to go well" I said "can mommy put this pretty on your finger?" she slightly hesitated, and then, like a big girl she went for it... no tears, just curiosity. Last of all was the blood pressure cuff, in other words her enemy. She HATES the blood pressure cuff. Well this one was too much, she started to cry and say "all done" we tried forever to get that stupid machine to work, but alas it was taking too long and the blood pressure cuff had to come off without a reading. But she never lost control like usual, she just continued to ask us to take it off as she cried. (side note, today she is playing with my knee brace and wrapping it around her leg and saying "pressure" )We were SO very proud of her being SO brave!

Next we moved on to the room where we had to have her EKG. There were some tears again with the cold gel stickers, but once the EKG was in progress, pictures on my iPhone of Ella kept her occupied (she sure does like to see her own pictures hahaha) then when it was time to take them all off, more tears... those stick very well and they hurt, but she was still very brave and thankfully it was done quick.

Next we visited with the cardiologist, he was very impressed and asked if we thought Ella would be up to doing an echo, because these kiddos at this age sometimes have to be sedated for Echo's because it's hard to get them to be still and not cry. We said we thought she could do it, and so we went to the echo room. She wasn't thrilled about laying down on the table, but I laid beside her and bribed her with my iPhone (thinking it will be a lifesaver for future visits :) ) Again I started her birthday video that her uncle Brandon made for her, and she laid there like a big girl content watching her life flash by in pictures. As I laid by her side watching her pictures and giving each picture an animated narration, I was thankful for how far we had come, God is so good!

After the echo was finished and reviewed, it was another visit with the cardiologist. More good news, "the echo looks GREAT guys"!! I was able to ask all my questions that had had written down to bring with me (yes I'm THAT mom) He was patient, and thorough when answering every question. He told us that Dallas would like her to be about 30lbs for her next surgery. Since she is almost there he told us he would text her surgeon in Dallas and let him know how great she looks and give him all the details that He will need to make the decision on when we will be going in for her next surgery. Because of how well she is looking her cardiologist thinks we are looking at next spring/summer but although unlikely it's possible to do it this fall if the surgeon thinks it needs to be that soon. That will give Ella time to get bigger, the bigger the better as long as her heart can stay strong until then! Her next appointment is going to be in Sept/Oct. he told us we could wait another 6 months, but we want to get her seen again before the flu season hits and also in enough time that if we have to go in for surgery she would, Lord willing, be out before the flu season hits (they don't want these kids in the hospital during the flu season if at all possible). So unless for some reason she can't make it to next year, we are looking at about a year until we have to go back!!!!!!!!! As ready as we are just to get  this last "scheduled" open heart surgery over with, we want what is best for her, and we are just fine with waiting.

We also got permission to.... drum roll please... start entering the world with her!!!!!!!!!!! I told him that I was concerned for her to get sick since she has been healthy for the last 21 months, he said "she looks so strong, I think she will handle it great". I told him of my fears of her sats dropping into oxygen distress ranges as with her 2 ear infections that she has had. He said he wasn't worried, and since her sats are so high right now she will be fine if they drop some. We are so excited to begin life with these new freedoms, but we are scared too! So for now we ask for your prayers for wisdom and protection as we SLOWLY begin the process of allowing her to get sick :( We will not purposely let her get sick of course, and she will still be sheltered some until  after her Fontan... who am I kidding, I think she will always be a little bit sheltered! hahaha.

So for those of you that will begin to see us more, remember that just because we are out does NOT mean that Ella should be touched ;) Also if you or a family member is sick I ask no BEG you to keep your distance! This is a HUGE step and adjustment for us as a family, and even though we are thrilled, it will take some time.

 We have poured everything we have for the last nearly 3 years into keeping this miracle alive and well, learning how to readjust our thinking is going to take time. We ask that you spare your judgement, and cover us in prayer and support. Just for the record if you feel the need to walk up and touch Ella without permission you may just get a fist in the face or a foot in the pants :) We will not be comfortable for quite some time, but just like every other hard choice we have made to protect her up until this point, we will continue to make the hard choices for her.

We aren't in this to win a popularity contest, we are just trying to be the best parents we can possibly be to the amazing gift we have been given. As we take our time easing into this new lifestyle, we ask that you don't push us to move faster then the pace we set. We ask that you don't take liberty to "help" us into the world by making us uncomfortable on purpose. We need prayers for strong immune systems, and strength.

Seeing my baby sick is going to break my heart. I will question our decision to have let her out, I will feel like a bad mom. I know the truth is that letting her test her wings (with the cardiologist's approval) is not being a bad mom, it is actually the best thing for her. I am truly EXCITED to see her become all that God has created her to be, and I know that every decision we have made to protect her up until this point is absolutely worthless if I can't trust God with her now. Her cardiologist thinks she is "so strong", he has faith in her ability to face this world and as her biggest cheerleader I will choose to let her live a full life despite my fears! She deserves every chance she gets to have more experiences! I never want my fear to cripple my judgement when it comes to her care. We do have fear, but we also have common sense and MANY doctor's consulting when it comes to her, sometimes limits have had and will have to be set to protect her, but the older she gets, the more freedom she will get to push her boundaries and fly beyond expectation!

She is a "pioneer setting the way for the babies that follow her with her rare condition". We are proud of her and we know that she will provide hope for those facing this journey behind her. It is so surreal to think back 7 years ago she wouldn't have even had a chance. They would have told us that our baby girl would die and we would have left empty handed. Surgery wasn't even an option... wow. We are so thankful that science has come so far and that we have an amazing team of doctors at CMC in Dallas.

So dear, dear friends, please rejoice in all of your answered prayers and don't let up, she will be facing a new mountain as we really test out the strength of her precious heart. May the Lord's will be done as we trust Him in a new way this season! Blessings on you our sweet prayer warriors! PRAISE THE LORD FOR HIS GOODNESS!

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 adventurous 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


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