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.....