Hayden goes home (Oct 2010)

Friends,
Please forgive me for being so behind we have had 5 more admissions to Childrens hospital since birth and I am very behind. He is doing fine, but recooping from RSV right now. When we get home I will try to get caught up with more pictures. God bless.

Ellen

Moved to CCU. Cardiac Care Unit

This is a step toward getting to go home.

Big Sis Hallie

Heidi waiting patiently

Big Sis Heidi

Last but not least, Big Sis Hope

Getting dressed to go home.

Precious little Miracle

Going home for the first time.

More to come...

Finally, Haydens birth!!

The Ronald Mc Donald House in Camden, NJ the night before.

10-5-10 6am my smile is a mask. I was terrified!!

Jeremy suiting up for the big event!

again scarred

Here he is fresh from my tummy.

and before his bath. we call this the cheesy picture. lol

The nurse to the left is pumping his oxygen.

Jeremy and my Parents

This was a special moment.
We were shocked when they got me back in my room and settled, Hayden's team brought him in and laid him on my chest. Everyone was crying. In order to do this...

They had to do this!!

He was retaining a lot of fluid.

He had to be vented.

I was still in a lot of pain. This was only a few hrs after his birth.

Hallie (8) was emotional

Heidi (6) was happy

Hope was Hope and is 4. lol

The next day he was all wrapped up and snuggled.
He looks cold but he was under a warmer.

How sweet is that!!

Yay, no more vent!!!

Sorry so late, that's all for now. Its been crazy.
Just so you know Hayden had his surgery Friday,11-05-10 exactly 1 month old.
He did great! His left lung is partially collapsed which was expected and it is holding some carbon dioxide. Today 11-8, it is better and clearing up do to the heavy oxygen treatments he is getting. He started eating from a bottle today, but it will take more time to get him up to where he was before. He is also getting his food through the NG tube. He is still in CICU (Cardiac Intensive Care Unit). They think he may move to CCU (Cardiac Care Unit) tomorrow.

Thank you all for your prayers. This has been the hardest time in our lives but God has done a wonderful work in our family. We have learned so much in this time.

God is in control!!!

Ready or not here HE comes!!

Dear family and friends,
We just wanted to give you an update on Hayden. Everything is still the same as before. Nothing has gotten worse, but things are still bad. We continue to put our faith and trust in God. We know He is still in control no matter what happens.

The C-section is scheduled for this Tuesday, October 5th. Hayden is getting the highest most intense quality of care any children's hospital in the country has to offer. They call it an impact delivery which means we will be in a very advanced OR that they call the Hybrid suite. He will have every Dr. he may possibly need and every resource the hospital has to offer there waiting just in case he needs them. They really don't know exactly what to expect. He may be able to breathe, he may struggle and need a little help or he may not be able to breathe at all. We just won't know until he comes out.

We are so glad the one and only true God knows. The one who created heaven and earth and who has also created our precious son. He knows the future and that is all that matters.

Thank you all for your love and prayers. We will never know how many prayers went up for our son, but we are so very grateful!!

God bless you all!

Hayden update # 5

Well, I know I posted some concerns and God has already shown Himself to us. We knew He would, He always does.

I mentioned briefly a disagreement between us and a couple Dr's out at CHOP. We sought godly counsel and prayed a lot for wisdom. We talked about it again with the Dr's at our last appointment and everything got worked out and we were able to walk away at peace. Not 100% happy, but our son will get all the care he will need and that is what we fought for. We must fight for what we feel is right for him, so that is what we did.

Yes, CHOP is the best hospital for Children, but remember they are not perfect. We do praise God we are here at this time and our son can and will get the best care possible, but there are always bumps along the road no matter where you are.

Also they have nailed down a date for the scheduled C-section.

OCTOBER 5th, 2010!!!
I would appreciate prayers for that as well. I have never had one and am terrified. Everyone tells me I'll be fine, but I am still scared.

Hayden's condition remains the same. We have a lot to do in one month, but God is providing and we are getting things done. My church is having a baby shower for me after church on Sept. 12th. I am very thankful and excited.

Also, I mentioned we had to home school this year due to the fact that I can not work, which was fine. We have done it before and we can do it again. I actually missed Hallie last year. We were concerned how I would juggle a fragile baby just out of heart surgery and 3 girls and school all day. So we excepted what path God put us on and we would do what ever we needed to do to educate our children.

Our Pastor came to us 2 weeks ago and said if we could pay for books and fees the girls tuition was covered!! What? Are you kidding me?!! I couldn't believe it. We weren't even praying for that and God knew what we would need because of our unique and sensitive situation.

Hallie and Heidi started school last Wednesday and love it!! We are so thankful for God's provision and grace.

Thank you all for your prayers. Our next appointment is Sept.15th and 22nd.

Hayden update #4

Dear Friends and family,

We have received so many comments and emails from so many people wishing us well and telling us we are in their prayers. We can not thank you all enough. Some of you are friends from college that I haven't seen in 10 years and you have heard about our baby, found my blog and encouraged our hearts. We thank you from the bottom of our hearts.

We are so thankful for our Lord and Savour who continues to provide for our needs. It was never the plan for me to be a stay at home mom here in Pa. It's expensive here and we were planning for me to get a position in our Christian school here so I would have a job and be with my girls everyday. Well, after we thought our prayers were answered and our Christian school offered me a position, I met with the principal and signed the contract, then at our very first appointment the Dr's informed us with Hayden's condition my working was really not an option. Now as we learn more about Hayden's worsening condition we see how true that really is. Why God has chosen this path for us we don't know, but we except it and trust Him to provide for our needs. Things are tight all the time and we do worry. I know we shouldn't worry, but we do. We are human and worrying is a part of it. Our faith is being tested right now and we may not understand what God is doing, but we do see wonderful changes in our family and how much closer we have gotten and how much we need each other and most importantly how much we need the Lord through all of this.

We are having revival meetings at our church this week through Wednesday. What an amazing 2 days we have had so far. I believe revival started in our home 2 months ago. Tonight we ordained our Assistant Pastor. What a beautiful and emotional service. I was so happy for them. I love going to church. I love being at the church, so any special meetings we have I am always so excited to be there. I most importantly love any chance we get to learn and grow in Christ.

Hayden's update has changed with in a weeks time. It's a roller coaster!! We had an appointment with one of the OB's and a midwife so they could discuss their thoughts and what they think the birth plan should be. We found out the head of the Ped. Cardiology unit is very concerned about Hayden and wants him to have the best care and everything he will need there and ready at birth so this brings us back to the dreaded scheduled C-SECTION. I said this before and I'll say it again. I may be scared of a c-section, but I will do whatever it takes to bring our son into the world the safest way possible. His care is the most important thing.

I can not go into detail, but we desperatly need more prayer. We are having a disagreement with the hospital on a situation. Please pray they will see things through our eyes as broken hearted parents and not a business. We need God to intervene and soften their hearts. Conflict and confrontation was the last thing we ever wanted. It's just more stress and we just don't need it.

Thank you all so very much for your prayers and encouragement. If you have us on your church prayer list please thank your church as well. We will probably never know how many hundreds of people are praying for us and our family. We are so thankful and humbled.