June 30, 2011. 48 hours after surgery

Ellie has all of her tubes removed except for her IVs, YEAH!!!!! She has had a really cranky day today so they still have her on a pain relief drip. We will be in ICU at least for another day maybe longer, it all depends on when Ellie is ready not to have the pain med drip. God has been good to us... he has a plan...I may not always think it is a good plan but it is Gods plan so it is a perfect plan. I just have to find the joy in every situation and I will have peace with the plan knowing it is his. Ellie is a fighter and living up to her name. She is doing better then the doctors thought she would. God is good.
I want to cry at the number of people who have showed how much they love and care about us this last year. It makes me want to cry when I think about how much Gods love for this one child brought soo many together. Thank you all for your blessings and prayers for our family.

June 29, 2011 second night

It is 9:15pm on the second night after Ellies surgery. I can not beleve how well she is doing. Her breathing tubes are out, her urine tube is out, her draining tube has been capped, her oxygen has been removed, and her brain monitor has been taken off. The only things that are left on her are the pace maker wires (which were never connected to a pace maker), her IVs, and her drain tube. I actually got to hold my baby girl today!!! As I look at her under the covers she looks like my baby girl and not a child that just went through open heart surgery a short time ago. PTL!!!!! For some reason I Am having trouble posting pictures so I will when I get home...take my word..she looks GREAT!

BTW...her cardiologist went to talk to another family today who just found out that their unborn baby has av canal defect and the possibility of down syndrome. The family is also patients of my OBGYN. My OBGYN called me today and asked me If I would talk with the family when we get out of the hospital to kind of help them through what will be the same road we traveled. Lord I wish this road on no one...it has been up and down and really scary. We are not over our hurdles yet and you are already showing me how I can be a blessing to others through the situation that wasn't the road I thought I would be traveling on. I pray that you touch this family as they walk this road...help them see that they are on alone and you are with them. Help them to see that having a child with down syndrome is not a curse or a burden. Help them see that you will be with them through the steps necessary to repair their heart...in the words of a good man I know "The one who made her heart is helping the surgeons repair it. Thank you soo much for your blessings. Help guide my words so I do not say too much or not enough, help them find joy in this pregnancy and birth of a beautiful child sent to them. In Jesus precious name AMEN

June 28, 2011. First night

Ellie continues to do well. However at first sight it broke my heart to see her. I knew she would have all those wires coming out of her but to see them first hand killed me. The nurses have made me turn my cell phone off because it will mess with the monitors which is why I haven't called anyone tonight. The nurses said she is doing good. She is still not out of the woods yet and a nurse stays by her side around the clock. They are giving her around the clock pain an heart meds and watching her closely for every health aspect. It is hard to see her like this. The tube down her throat to help her breath is bothering her and making fluid build up in her throat so they have to suction her throat from time to time and she really doesn't like that. They also have not let her eat yet. They said we will be in ICU at least until Thursday. I will be glad when she is awake and can eat. I miss my baby girl. Please continue to pray. God bless you all.

It was soo hard to see her like this.

June 28, 2011 surgery day

I will be making updates to this post on a regular basis. I will place a time so you will know it is current.

7:28am: They took her back to the pre-surgery room. This is where they give her the medicine to put her to sleep. It tore me up to watch them take her back...she was looking at me like mom where am I going. They said surgery will not start until 9:00ish. This is going to be a long day. There are over 12 people here supporting and praying for her here at the hospital...we are sooooo blessed to be loved. Waiting is no fun.

Here are some pictures before they took her the day of surgery...

 

9:15 - The nurse just came out.  They had a little trouble getting an IV started which is why they started a little later.  She is stable and handling the anesthesia like a champ.  They are starting.  Lord I pray you keep her safe and you are with the surgeons hands as he is working on her heart.  Lord you made her heart and I know you are guiding the surgeons hands to fix it.

10:20 - The nurse just came in and said Ellie is doing great.  She is on the bi-pass machine and is doing great.  There are no issues and everything is as planned.  She assured us Ellie can feel nothing.  I miss her soo much. 

11:30 - The nurse said they are just about at the halfway point.  She said Ellie is doing great and the next time we see her they should be getting ready to take her off the bi-pass machine.

12:35 - She is off the bi-pass machine and her heart is beating like it should on its own.  The surgical repair is finished they are waiting for the bleeding to slow down before they close her up.  The nurse said she would be out within the next hour to let me know when they close her up.  PTL she has the pace maker wires connected but at the moment she doesn't need them.  They said she is doing great...no complications.

1:15 - Surgery is over.  She is all closed up.  She did great.  No complications.  She will stay sedated today and they will start to wake her up tomorrow and remove the breathing tube.  The pacemaker wires will stay attached but she does not need them.  They will keep them on for the next couple of days as a precaution.  Her holes are repaired and the valve is leaking mildly which is what they wanted.  Her brain was being monitored and she had no issues with that either.  PTL it is almost over.  We will get to see her in a couple of hours.  They need to get her settled into her room with the wires and tubes.  Then I will not have to leave her side.  Thank you everyone for your prayers.  Thank you Jesus the skill you gave the surgeon and for keeping her safe.  Please continue to pray as she recovers.  We are on our way to the start of her new heart life.

 

June 26, 2011

Well here we are surgery eve. Tomorrow morning at 5:00am we will be making our way to the hospital were we will start the whole process by 6:00. We went today to have blood work and screenings done. Surgery is a go. Ellie was not very happy that they had to take blood from a vein in her head...I felt soo bad for her. The dr assured me Ellie would feel NO pain the whole time she will be at the hospital and that her life was more at risk driving to the hospital then it will be during surgery. It is all in Gods hands now...everything I can possibly do to get ready is done. Bags are packed, house is well sort of clean, our other two children are attended to. My stomach is in my feet and my dinner feels like it is going to come up...but I am ready. Ellie is ready. God has her in his hands. The next post will be updating everyone about the actual surgery. Thank you all for your prayers...

June 24, 2011

http://m.youtube.com/index?desktop_uri=%2F&gl=US#/watch?v=NtlnIqslRU8

A really great song it makes me think of Ellie...

I was able to be a blood donor for Ellie and a very good friend of mine was able to also. When she was born June seemed soo far away...and now that it is here I wish it was farther away...thank you all for your thoughts and prayers and for extending my prayer request to everyone you know. May god bless you all.

June 23, 2011

We are less then 5 days away from surgery and my heart is racing every time I think about it. I am soo grateful for the skill and knowledge the doctors and surgeons have yet at the same time they are my worst nightmare and I want to run away from them screaming with Ellie in my arms. I know they are going to help her and make her better so she can live a long and happy life yet at the same time I feel like I have to protect her from them. I wish children didn't have to go through things like this. I wish I could bare this burden for her. I wish the lord would have healed her (and I know he still can) and I know he will either through the surgeons hands or before the surgery. People keep telling me she will be ok...everything is going to be alright and what a blessing...it really doesn't feel like it is going to be alright and it really doesn't feel like a blessing. It seems the closer I get to the lord and living right the more obstacles there are before me...those who know me know I haven't had the easiest life, so why does it all happen to me. I know I am blessed...I have a wonderful husband...a loving family...three beautiful children (including Ellie), a beautiful house, a job, a degree, awesome friends, and a god who loves me to the end, but this still hurts and I still want it to be better, and I still want more...I want god to fix her...I want to enjoy her...I want not to look at her and worry for her life both for the surgery and future. I can not wait until August 1, 2011 - then this will all seem like a dream - her surgery will be over and she will be healed...lord please let this be my future...please do not take her, please do not make her have to have a pace maker, please let her heal quickly with no complications....please... In Jesus name amen

Please forgive me for my lack of faith in a time of despair - thank you for your continued prayers and for loving us soo much.....

June 16, 2011. Our story

January 24, 2011 began a journey in life I never thought I would have to take.  On this day, we were blessed with a child born with down syndrome and a congenital heart defect called Complete AV canal defect.  Apparently this defect is common among children with Down Syndrome, however, I have never heard about it before now.  Her name is Ellie Mae.  She is 5 months old now.  We have been struggling to help her gain weight.  Due to her heart condition she is on heart medications and her heart is working as if she is running on a treadmill non-stop.  When she was born she was 7lbs 9oz.  At 5 months old she is 10lbs 5oz. It is hard for me to look at this little baby and not worry.  My other two children were well into the 20lb mark by 5 months old.  Little Ellie Mae is still in 0-3 month clothes and still sleeping in her bassinet.  It is amazing to me to watch her stay so little.  I actually get to have a baby for a longer time then most people.  Anyway, she is going to have to have open heart surgery on June 28, 2011 at 7:30am.  It is soo hard to look at her and imagine them "cutting" into her to fix her heart.  I have er on every prayer chain in the whole world that I could imagine.  I tried to save her myself.  I need to remember this is God's will not mine.  One of the hardest things for me as we are walking through this is the unknown.  What is to come.  So I decided to create a blog to help people stay updated on her condition throughout the entire hospital stay and to help someone else who might be facing the same thing we are in the future.  I will try to post something on here again before the surgery and once we are in the hospital I will post daily and post a picture of her progress.  Please feel free to post comments on here I will try to answer them in a timely fashion.  Thank you for your continued prayers and for loving our family soo much.  We all need the prayers.  This is going to be a rough next month or so.  Sorry if this is a rambling mess...it is just a snap shot of how my mind is functioning at the present moment.

The following is the information and updates we posted on a prayer chain request website that gives a little more insight into the world of Ellie Mae

2-10-11
Ellie was born Jan 24, 2011 and she has Down Syndrome and a congenital heart defect called Complete AV Canal Defect.  This is a heart defect that will require open heart surgery sometime in early June 2011.  Please place her on every prayer chain you know...till we can get the whole world praying for Ellie...Lord please heal her...put her heart back together...Thank you for letting us have her here with us...please continue to allow Ellie to touch everyone the way her little face has already done...
You can not imagine the terror I feel knowing that my little baby girl is going to have to face this massive surgery in June. It will be complete open heart surgery. I wish I could have the surgery for her...I pray that the Lord heals her either through the dr hands during the surgery or completely so she doesn't even have to have the surgery...Thank you for extending my prayer request...looking into her beautiful eyes knowing that everyday is a gift and praying to have her again tomorrow...Thank you LORD for letting me barrow your angel...

3-10-11
ELLIE UPDATE: She is doing well...she is gaining weight and growing but the Dr. are thinking we are getting closer to surgery...which we think will be in June or sooner depending on her...because she is starting to show signs of heat failure.  Thank you...please continue to pray for her!! THANK YOU SOO MUCH for passing my prayer chain on!  May GOD BLESS YOU ALL!
Here is some more details of Ellie's conditon:

ELLIE UPDATE 4-8-2011
Ellie's surgery is still scheduled for Early to mid June.  However, God's hands have been on her as she is not having any major health issues and she continues to grow..she is over 9 pounds now...God also gave my best friend a vision that Ellie will be healed and in her visions there were no signs of down syndrome.  I pray everyday that God heals her heart so she doesn't have to go through this horrible surgery...what a testimony it would be to proclaiim the healing of a condition that can not be healed without surgery....LORD I know all you have to do is think it and it is done...please let it be your will...
THank you everyone for your continued prayers


Ellie Update 6-6-2011
Still waiting on the surgery date, the dr said 2 weeks ago that it would be in 2 to 3 weeks.  The anxiety is killing me.  I pray that se doesn't need this surger, and if she does I pray for a quick and painless recovery...and to ease my worry...Praise the Lord she has been doing so well.  She is 10 1/2 pounds and 22 1/2 inches long...Thank you all for your prayers...May God Bless you all!!