Hope Realized

I just noticed the other day what I had written at the top of the blog describing our site. How Sara's sisters hope one day their sister could come home. Written on a day we didn't know if that would ever happen. But that day has come. Neat coincidence - in our mailbox today - her certificate of live birth. 65 days, 5 hours, 24 minutes, and 37 seconds (not that we were counting) from when we walked out of our house to go to the hospital with Jennifer in labor the 5 of us are back together again under one roof. My friends, there just aren't words.....

As I write this (while drinking a caramel shake), Sara is laying in her bassinet to my right as Jennifer bathes Abigail and Emma Grace. No trip to the hospital tonight, just bedtime at 9pm tonight and every night for the next 3 months.

Jennifer and I felt the pressure of leaving today. We had been told that if Sara bradyed (sudden drop in heart rate) while feeding we could be in the unit three more days. So while I gave her a bottle at 9am and Jennifer at 12pm we were sweating bullets. Here Sara, drink this down, no not too fast, oh no, wait, is she choking, what's her heartrate, is it dropping....AAUUGGHH. Pressure. She made it through. The docs gave the ok, half of her stitches were removed, she nursed and away we went.

This is post-op. Still has IV in hand. But she has no oxygen and no feeding tube - that was a first. She never looked back. Has taken every bottle with no problem since the operation. The nurses continually were amazed at her. That's what happens when God shows up!

This one is for the women, the little shoes on her feet. Every nurse made a big deal of them. Whatever - it's an outfit.

Abigail and Emma Grace hanging out in the courtesy room with Uncle Buck while mom and dad talk to doctors and nurses about leaving.

Going home outfit - HELP! Whose pants are these??? They are swallowing me!!!

Snapped up and ready to go

This is the second time Abigail and Emma Grace have seen their sister. The first time was 7 weeks ago when we had to tell them their sister might not be alive much longer.

Hard to put into words how Jennifer and I feel about Dr. Desolar. He was with us the first three weeks when it was dark. He has been with us the last 3 and we've been doing alot of smiling and laughing with him. He's not only an excellent doc, but has the warmth of a father. Jennifer really appreciated that when it was tough. He loves children and works very hard to help them live.

Neat pic Buck, thanks for being there today and getting these great pics

Emma Grace said - Uh, dad, you put her in backwards

Quick, shut the door, lock it, let's go before they change their mind

Sayonara!!

Big Sis has been dreaming of this moment

The New Normal
So what will life be like now? I wish I knew. I know it will involve 3,745 doctors visits in the next 3 months. Ok, maybe the next 6 months. Pediatricians, neurosurgeons, neurologists, heart doctors, eye screening, hearing screening, and weekly therapy visits to the home. Not to mention us learning therapy routines and doing it ourselves daily.

We have to live with precautions we are not used to. Basically if Sara gets the flu or RSV it will be life threatening. Why? Several reasons. She was born with the strep infection and was hammered with antibiotics. Therefore her immune system is weak. She had lung developmental issues. She's a preemie. Any sickness would probably send her to the hospital and back on the vent. Therefore we have been advised to stay home with her as much as possible until the spring. When our girls come home and have been around other children they have to come in, change clothes and wash hands. Same for Jennifer and I. No trips to church, Walmart, mall or other places with big crowds. Limited visitors at home. Pray we will be wise. Pray she doesn't get sick.

Sara will receive the special RSV shot, so that should help. Are all the precautions necessary? No one knows, she might still get sick. But it's a chance we are not taking. After 65 days in the hospital we don't want to go back.

Several people have asked me about the blog. Of course I'll keep it going. Updates will probably be more weekly than daily. But so many of you have grown so attached to Sara, we wouldn't dream of ending this. This has been a journey God has decided for us to go on. Many of you have chosen to go on it with us. You have made the load lighter. We have felt like we have marched through the valley of the shadow of death with an army of brothers and sisters in Christ, friends, and family. In the spiritual realm you have had our flanks and our backs. Thank you, let's not stop now.

Here is part of our family over the last 65 days. These are docs, nurses, and other support staff who have been incredible! Thank the Lord for them, we get to leave, they stay and continue to help the helpless. I wish we could have gotten all their pics, and I hope I spelled their names right. We'll never forget them.

Aunt Aimee

Aunt Ally

Kim

Mary Grace

Jessica

Hope and Rita

Clay and Anne

Rita and Evelyn

Courtney

Fenishia

Neurosurgeon - one proud doc. He said today - I think the Good Lord has been helping your baby. Could there be a bigger understatement?

Kate

Mona

Jennifer

There's more to this story we haven't told. I'm working on putting something together that tells it. All of you are a big part of it - thanks. Your prayers, encouragement, and support have meant the world to us. Jennifer and I look forward to the day we can be that for a family in our situation. I pray God's richest blessing to flow freely in your lives for years to come! With His Love and all our love - go have a milkshake!

Home!! 4:24pm

Pics and details to come later tonight

It's Official!!!

Going home tomorrow sometime after we meet with Neurosurgeon at 1. Somebody pinch me.

It's looking like Wednesday is THE Day

If Sara's CAT scan looks good tomorrow, then it looks like we could go home Wednesday. Nothing is ever definite in NICU except the fact that nothing is ever definite. But right now that is how it is trending.

36 Weeks (9 weeks old)

And probably our last week in NICU. That's right, unless we have an unforeseen setback - this is the week we are going home. Don't know when, still some things to be done, but later this week. She is up to 6lbs 3oz, eating over 50cc's of breast milk every three hours from a bottle, no more feeding tube, and she is eating it in less than 10 minutes. Us, the nurses and doctors are marveling at her. Most think the shunt has relieved whatever pressure she was having on her brain. It would be like going from having a constant headache to no headache. In other words, she feels good!

As of right now she is fatter than both of her sisters when they came home after being born 3 weeks early. Although neither of them spent a second in NICU. I have new pics, but the camera is at the hospital. We are trying to get pics of as many of the nurses as we can who have taken care of her before we leave and while they are working.

Got Sara's room ready this weekend, a little paint, put the baby bed back together, and moved other furniture around. Got the car seat out of the attic and cleaned up. It's getting close. Our church family even threw us a Welcome Home party last night and overwhelmed us with love, gifts, and support. They are awesome and we thank God for them.

6 lbs!!

She was weighed tonight at a touch over 6 lbs! That is after almost no food for the last 2 days. She woke up at midnight, scarfed down 40 cc's of milk in 3 minutes and went back to sleep. She now weighs more than her sisters did when they came home from the hospital.

2 Months Old

That's right 2 months have gone by that fast - but we are getting close. Sara is up to 40cc's a feeding and receiving a bottle every three hours. The neurosurgeon is very very pleased with her progress and he said all she needs to do is #2 and eat well and she is going home. So pray for that.

Her bandages were removed and when she has a bowel movement she will move back to an open crib. Jennifer got to hold her this afternoon - that was sweet. It's getting close friends, we can smell the end of this. Either Jennifer or I are at the hospital now all the time. She takes the days and I stay at night. I am about to head in at 9 to give her a bottle, then 12, then 3, then 6, then home, then church, preach, then back to the hospital. Thank the Lord for a courtesy room. Have a great Sunday!