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!
Saturday, May 28, 2011
Tuesday, May 24, 2011
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! :)
Saturday, May 14, 2011
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!
Wednesday, May 11, 2011
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!
Sunday, May 8, 2011
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!
Friday, May 6, 2011
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
Sunday, April 24, 2011
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 :)
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 :)
Thursday, April 21, 2011
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! :)
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! :)
Wednesday, April 20, 2011
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!!
Saturday, April 9, 2011
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!
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!
Wednesday, March 30, 2011
Wednesday, March 23, 2011
Update = PRAISE
At Ella's cardiologist appointment today we received some incredible news... her right diaphragm is no longer paralyzed!!!!! Jesus has healed her!!!! Jon and I noticed a few nights ago that her sats were really high and she was sleeping, so the next morning I checked her breathing and it looked great to me, then Jon looked at it and it looked good to him too! We were almost positive that it had come back and she hasn't needed oxygen even at night since then! We were hoping that the appointment today would confirm that indeed it had fully come back and will NOT require an additional surgery... and it was officially confirmed!!!! Tomorrow marks 10 weeks since her last open heart surgery and she is doing PERFECT! She gained a pound and a half and grew an inch! The cardiologist said She looked perfect NO COMPLICATIONS!!!! Oh what a WONDERFUL thing to hear! She is still of course at risk of getting sick, so we will still have to take strong precautions especially through the end of the flu season, but overall this is a huge step! We will be able to slowly start seeing more people and going to some events as long as we are cautious, of course Ella is still off limits to other people ESPECIALLY KIDS! But we are VERY encouraged at this new "freedom"! Thank you all for your continued prayers! We ask that you continue to pray for her and our protection from germs and sickness, we also ask that if we come in contact with you in the near future that you make sure that you are not sick at all before approaching us, we have come so far and we don't want to backslide now!! I hope you can all understand how grateful we are for your support, prayers, and understanding with the boundaries! God has been so merciful to us, praise Him, praise Him, praise Him!!!! Have a wonderful day in the Lord!!
Sunday, March 20, 2011
Enjoy your Sunday!
Ella is learning to put some weight on her own two feet!
Our pretty sunshine!
Playing outside with her daddy!Ella went all night without her oxygen and her alarm never sounded! Her sats stayed in the low 80's (PERFECT) !!!!! Her next cardiologist appointment is on the 23rd, we are ready to see how her diaphragm is doing even though we can tell from her oxygen something is getting better! Keep the prayers coming, God is answering them!
Tuesday, March 15, 2011
Coincidence?
So I have been thinking a lot lately about writing this post but wasn't quite sure if it would mean as much to everyone else as it does to me. I guess it's all about why we go through trials in life. Sometimes we never know, sometimes we don't know for a very long time, sometimes we get the blessing of knowing why almost immediately. As this story goes the "reason" was made clear for me almost instantly. I am talking about the story of my pregnancy. If you know me you know it was a challenge. I almost lost Ella twice before we even knew of her heart condition. My Doctor told me I was close to losing my life due to the severe daily/hourly vomiting and weight loss. Every day I felt like I couldn't keep going, almost everyday brought emotional breakdowns. I was helpless and sicker than I had ever been in my whole life. I endured so much over those first several months. I cried, begged God for relief. I prayed for the vomit to stop for the nausea to subside. I had such dreams of what it would be like to be pregnant. I love dressing up and accessorizing, fixing my hair, wearing make-up etc. Unfortunately the "cute pregnant lady" was the furthest thing in describing me those long 9 months. I had high hopes the sickness would lessen as the days, weeks, and months past. I prayed that it would. But despite my daily dis pare and breakdowns I never once wished my baby away. I was told over and over that it would all be worth it! I was encouraged by others that maybe week 13, week 20, week 23, week 30,... would bring relief after all everyone is different. I am not going to lie and say there were times during my month long hospital stay that I wondered if this baby really would be worth it all, but I knew I always wanted to be a mommy, so I would press on. As the days went by I was so anxious to find out if the baby I had been working so hard for was going to be a boy or a girl. I was truly ok if it was a boy but I desperately wanted a girl! I never really said that out loud after got pregnant mostly because if the baby was a boy I wouldn't want him to hear me say that I only wanted a girl. That may seem silly to some, but I just never wanted my child to feel unwanted in any way. Well the day finally came to have the big ultrasound, I was still ridiculously sick but excited to see my baby for the 4th time and hopefully find out the gender! Going into the ultrasound I remember telling the tech I bet she has the most fun job, she said well sometimes it is but other times if there is bad news it is the hardest job. I remember her saying she got so frustrated with parents that would come in just wanting to know the gender and didn't even ask if the baby was healthy. I thought to myself " well this is my 4th ultrasound, I guess I never thought something could be wrong now." She continued to scan all the different features, and finally she somewhat solemnly and abruptly said "and it looks like it's a girl." No build up or are you ready? Just plain and simple. I remember thinking, "someones not to enthusiastic today." But I turned to Jon and grinned ear to ear. I asked her if she was very sure and she said yes! I remember thinking it's a good thing it's a girl because having a girl is my dream, and I am never going through pregnancy again! Now I have my girl I'll never have to do this again. Truth be told I wanted at least three kids maybe more, but after the 21weeks I had already endured 1 sounded just great, especially since it was a girl! I asked the tech if everything looked good (I didn't want to be one of those parents that she assumed didn't care because they didn't ask. Even though I knew the first three ultrasounds were great.) She said yup everything looks good. Then she went on and said sometimes they like to take a second look at things just to make sure. I remember thinking that seems kinda out of place, but I was so excited and extremely nauseous and this being my first baby I just pushed it out of my mind telling myself I'm sure they just say that to everyone to cover their bases. We went on to announce our great joy that Ella Dawn would be the new addition to our growing family! I know you've heard the story from there about the phone call and diagnosis so I won't tell it all again, but after we heard the devastating news, all that I had been through seemed worthless. I felt like She had no hope, I felt like my dreams had been ripped out of my grasp. I felt sorry for myself for all I was going through. I asked God why. Why did I have to be so sick that I couldn't even enjoy the precious moments I had been given with my daughter. At that moment I felt like I would lose her, and I determined that regardless of how sick I was I would treasure every moment with her. I had tried hard to focus on the "prize" at the end of the sickness, and I had cherished every little flutter and thump. But after the 23 week ultrasound the days seemed to mean even more. Then at the 25 week ultrasound when we got even worse news, well I really really didn't understand how or why this was all happening. I prayed for God to heal me so that I could treasure her more and enjoy the time I did have with her, knowing in my heart that that time could be coming to an end soon. Yet God didn't take the vomiting away, He didn't give me my energy back, He didn't give me my strength back, He didn't... I couldn't understand why on earth this was happening. To have a sick pregnancy, or to have a baby that may die after birth are both horrible but together it was what I felt to be very unfair. I trusted God, but I didn't ever think I would understand why I had to endure the sickness part. Instantly after word began to spread of Ella's condition people began to pray. People's lives began to change, their prayer lives grew, testimony after testimony flowed in and Ella is still making a difference to this day. It breaks my heart that she is and will go through this forever, but at least good is coming out of it. She is making a difference through her sacrifice. I was just sick... ugly and sick. I wasn't strong or joyful, I wasn't thriving... I was barely surviving. I don't even know what would have happened without my husband and my mom. I never turned my back on God, but I did wonder multiple times a day why He wasn't taking away this sickness and letting me have some treasured time without nausea. Well not long ago I was just thinking about how much I love Ella, and how hard it is to watch her in pain. Becoming a parent has helped me realize that the love a parent has for a child is indescribable and God loves me so much more then I love Ella! Loving Ella has given me a hint of the feelings God has for His children, I have to say WOW God's love is so much more than I realized. Anyway I was thinking about the pain she was feeling and how I know that the pain she is going through is for her good, of course I'm not all knowing and I don't ultimately know why she is enduring all this. But I thought to myself how glad I am that she isn't old enough to ask me to take away the pain, to ask me why, and to cry tears as she begs me to stop all of it. I know that God loves me dearly and I know He hurt for me as I begged Him daily for a break. I also know that He was loving me by allowing the suffering. He didn't leave me alone, He encouraged me through His word at just the right times! He encouraged me through friends and family. But He had to let me continue to fight. As I enter into the next part of this post, I want to just say that I am not saying that what I went through during the pregnancy is anywhere near the pain and suffering Ella has endured. I guess I have feared people would read this and not get the idea of what I have learned and merely see me making light of Ella's condition. So I ask that you keep in mind the comparison is merely something God has shown me! I really find this so exciting, It has strengthened my faith in God's plan! I want to share with you some "reasons" why I feel like I went through what I did.
During my pregnancy I experienced: Since Ella was born she has experienced:
a 4 day hospital stay a 4 day hospital stay
a month long hospital stay a month long hospital stay
a picc line (feeding tube) TPN a picc line (feeding tube) TPN
my first surgery her first surgery
a 4 inch scar (c-section incision) a 4 inch scar (chest incision)
blood sugar testing (from TPN) blood sugar testing (from TPN)
severe vomiting severe vomiting
trouble gaining weight trouble gaining weight
gall bladder crystals/sludge gall bladder crystals/sludge
I am sure their are even more that I am forgetting. Before my pregnancy I had never been in the hospital, I had never felt comfortable with talking to people in power or strong authority figures. I hadn't experienced any of the things on the list above before I got pregnant. I learned so many things during those 9 months that prepared me for the next season that we are living out now. I grew so much during the pregnancy, I learned to cherish every moment. I learned to be an advocate for myself and for Ella. I learned how to communicate with those in powerful positions, top surgeons, special pediatric cardiologists, social workers, insurance companies, pharmacists etc. I learned to continue when the road is hard. I learned to put Ella ahead of myself. This is a pretty big step for such a naturally selfish, wimpy person like myself! I remember when God reveled to me the incredible (in my opinion) similarities between what Ella and I had experienced. Yes Ella has endured way more then me, but I believe that I experienced enough to understand a little bit of what she has been through. Without that experience I would have been lost. I feel like God did everything He could to help me but He wouldn't take it away because the purpose was so important. He did little things along the way that I know was Him giving me a hug, he has done things since Ella's birth that I feel are Him giving me a hug. He has given me many blessings along the way that just keep me trusting. I know that God is good, I know that He doesn't always give us what we pray for, but I know He gives us what we need. Thank you Jesus for the difficult pregnancy for my suffering, for my discomfort. I know that sometimes we don't ever know why, but I am so grateful God has shown me so quickly why I suffered like I did. So maybe you don't find it as exciting and faith building as I do, but I have no doubt that God is in control! As a parent myself I have began to learn that true love is not always what the person you are loving wants. I am amazed at God's unconditional selfless love for His children, what a perfect example for parents!! So to all those doctors that told me my sickness was just a coincidence... I think you're wrong, my God is so much bigger then coincidence!
During my pregnancy I experienced: Since Ella was born she has experienced:
a 4 day hospital stay a 4 day hospital stay
a month long hospital stay a month long hospital stay
a picc line (feeding tube) TPN a picc line (feeding tube) TPN
my first surgery her first surgery
a 4 inch scar (c-section incision) a 4 inch scar (chest incision)
blood sugar testing (from TPN) blood sugar testing (from TPN)
severe vomiting severe vomiting
trouble gaining weight trouble gaining weight
gall bladder crystals/sludge gall bladder crystals/sludge
I am sure their are even more that I am forgetting. Before my pregnancy I had never been in the hospital, I had never felt comfortable with talking to people in power or strong authority figures. I hadn't experienced any of the things on the list above before I got pregnant. I learned so many things during those 9 months that prepared me for the next season that we are living out now. I grew so much during the pregnancy, I learned to cherish every moment. I learned to be an advocate for myself and for Ella. I learned how to communicate with those in powerful positions, top surgeons, special pediatric cardiologists, social workers, insurance companies, pharmacists etc. I learned to continue when the road is hard. I learned to put Ella ahead of myself. This is a pretty big step for such a naturally selfish, wimpy person like myself! I remember when God reveled to me the incredible (in my opinion) similarities between what Ella and I had experienced. Yes Ella has endured way more then me, but I believe that I experienced enough to understand a little bit of what she has been through. Without that experience I would have been lost. I feel like God did everything He could to help me but He wouldn't take it away because the purpose was so important. He did little things along the way that I know was Him giving me a hug, he has done things since Ella's birth that I feel are Him giving me a hug. He has given me many blessings along the way that just keep me trusting. I know that God is good, I know that He doesn't always give us what we pray for, but I know He gives us what we need. Thank you Jesus for the difficult pregnancy for my suffering, for my discomfort. I know that sometimes we don't ever know why, but I am so grateful God has shown me so quickly why I suffered like I did. So maybe you don't find it as exciting and faith building as I do, but I have no doubt that God is in control! As a parent myself I have began to learn that true love is not always what the person you are loving wants. I am amazed at God's unconditional selfless love for His children, what a perfect example for parents!! So to all those doctors that told me my sickness was just a coincidence... I think you're wrong, my God is so much bigger then coincidence!
Monday, March 14, 2011
Thursday, March 10, 2011
picture and update!
So although Ella isn't off oxygen all the time she is off MOST of the time!!! We hook her up when she is sleeping but during the day for the most part she is cord free!!! Oh this makes me squeal with delight! I can't tell you how much easier it is to do things around the house with a baby and not having to drag a cord all over with us! Also her eating is still a struggle but she has had some great days recently! As you can see in the picture she is getting nice and chubby! :) Thank you all for continuing to pray, she still needs a better more consistent appetite, and also her right diaphragm is still paralyzed.
Sunday, March 6, 2011
update on oxygen
So after Ella fell into a deep sleep her monitor sounded letting us know that her oxygen level had dropped below 70. We had to turn it back on while she was sleeping. This is still a huge encouragement! It is very normal for her oxygen level to be lower while she is sleeping, but they don't want it in the 60's. Anyway her stats used to be in the 50's-60's while she was awake when we took her off the oxygen. Now while she is awake and off oxygen it is 80's-90's!! This IS improvement! So we know that her diaphragm has not completely healed yet, but we also know something good is taking place inside our little sunshine!!! Thank you for your continued prayers!!!!!
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