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!

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!!!!!

Saturday, March 5, 2011

HUGE PRAISE!!!!!!!!!!!!!!!

HUGE PRAISE! Ella's is off of her oxygen, she may need to go back on it but we are praying that the Lord has healed her diaphragm!!! Please be praying her stats stay up, they are in the high 80's and low 90's and have been holding steady for more then 30 min.!!!!! This is AMAZING!!!! PRAISING JESUS!!!!!!!!!!!!!!!!!!!!!!!!!! Please please pray that her diaphragm has been healed, the doctor said it might come back slowly as in this may be temporary, please pray this is permanent!!!

Also speaking of good news, Ella's heart friend Emma that is waiting on a heart got off her ventilator and has been off over 24 hours!!!!! Jesus is working overtime today! Please keep them in your prayers!!! They are so very dear to our hearts!

Friday, March 4, 2011

picture

They offered me an abortion...
every moment of everyday I am blessed by this 20% chance!