Growing in Grace

Sorry I do not have pictures. We r back in the hospital with Hayden for the third time this month.

He was in on New Years Day for RSV-Broncialitis for 3 days then sent home.

January 14th we were in our local ER because his breathing was bad again and he had a fever. His fever came down and his breathing got better so they sent us home. The next morning his fever was back, his breathing bad again and a puss pocket had formed over night at the bottom of his incision. I called the pediatrician and she said go straight to CHOP.

I got to CHOP ER and a Doctor recognised us and came around and listened to Hayden's breathing. She walked back around the desk got on the phone and said "I need a bed for a Critical Respiratory infant now!". I was shocked. I had no idea he was critical. They got us right back and got him on oxygen. His fever was over 102. close to 103.

They put him In CICU (Cardiac Intensive Care Unit) for 3 days on oxygen. His fever didn't want to come down. Day 3 it finally did. We were in CCU for another 3 or 4 days and went home.

Jan. 29th back at CHOP. It is his incision again. We got here around 4pm Saturday and got into out room around 1am Sunday. We were exhausted. Hayden has been miserable. He had a fever again of 102.8. The stitches from the surgery are inside Hayden and are supposed to absorb into the body. Well, Hayden's body is rejecting the knot at the bottom like a foreign object and is trying to push it out, thus the puss and infection and fevers. It seems to be a vicious cycle. The Doctors say it isn't very common but it can happen. Hayden's just lucky I guess.lol

God is in control. He knows what we need and He will heal it in his timing. Please pray for healing for Hayden and Gods continued grace through it all.

God Bless,
Ellen

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.