Wednesday, November 14, 2007

First Months

A quickly got used to his new home. His first obstacle was to get some weight on. He'd go several times a week on a walk to the pediatrician office and get weighed.

He learned to make facial expressions and look at people.

And learned how to speak his mind.


And loved sleeping in his cradle.





A discovered new fun things to play with like pens and rings and his hands.
And celebrated his very first Christmas.






Monday, October 22, 2007

First time home!






The day finally came and Alan got to be discharged to see his home for the very first time. It was a long day. The hospital was new and didn't have all the kinks worked out as far as discharge procedure and prescriptions. Finally got out of there though. Alan tried out his carseat, got dressed up and loaded up to go home. His nice grandma went and picked up his prescriptions during rush hour so he could go straight home.

He had a good drive home. Of course there was traffic but he hung out in his carseat and enjoyed all the new sights busting out of the hospital.





Finally safe at home, things were crazy for awhile. Alan worked very hard trying to grow. Every three hours he took some food in - first by breast or bottle and then from his ng tube. He got it out pretty quickly but still visited the pediatrician all the time to have his weight checked to try to grow him a little bigger. He got comfortable finally being at home. He slept in a cradle in mom and dad's bedroom. Kept mom company during the remainder of her maternity leave.

Tuesday, October 9, 2007

Recovery

Waiting for Alan to get better felt like a slow and agonizing process. Little did we know at the time - a month long hospitalization isn't so bad.



Alan got his chest closed up with staples.













Then started to open his eyes.











Got extubated and switched from ventillator to Cpap machine. One of our favorite nurses, Sarah, made a cut-out binky so Alan could keep it in his mouth even with the Cpap.

And of course learned to make spit bubbles. A very important skill.
And finally - started breathing on his own and getting fed mommy's milk.
And got snuggles from dad.
And finally got to move up to some sweeter digs. Left the CICU and got a penthouse 9th floor set up in the CPCU.
Sweet crib. This is Alan getting one of his feeds. He went home on about half feeding by mouth, and half by tube but caught on pretty quick to where he didn't need the ng tube.

Tuesday, October 2, 2007

Surgery Day

Alan's first surgery was a very long day. We hugged him and said goodbye early early in the morning and watched him wheel back to the OR which is luckily only feet away from the CICU. We spent our time in the waiting room with the grandmas and grandpas. The plan was to complete the procedure without having to go on the bypass machine. We were getting hourly updates from Esther, the surgery liason. We got news that he was done and that his chest was being closed up.

Then.. next thing that happened, Esther came back out and pulled us to a private waiting room to talk with us. Apparently right as he was being closed up, he started de-sating and all his numbers went crazy and they didn't know what was going on but had to put him on heart-lung bypass and go back in. We were terrified. The next update was that Dr. Campbell, the surgeon, had found that the shunt had clotted. He had to go in and re-do the shunt. It turned into a very long day. Finally he was done and able to be taken off the heart-lung machine but had to have his chest left open for a few days because he was too swollen to be stitched back up. Finally at the end of the day we got to see Alan.


He was in rough shape that night and for the next several days. He was on the ventilator. He had tons of meds going into him - about 22 was what we counted. Three chest drains, which pull out excess blood and fluid. He had a Foley catheter in for urine.










Alan's chest stayed open for several days. The opening was covered with a patch. The cool part was that you could see his heart beating beneath the patch. He was very swollen and puffy. We were warned before seeing Alan post-op that he would be difficult to look at. Honestly though we were pleasantly surprised. It was such a relief after that day just to see him.



Saturday, September 29, 2007

Moving day.


This was the day Alan moved to the new hospital. He was one of the first kids transported that morning. He was the first patient in the CICU!
A Flights crew from Kansas City came out to help with the move. They packed Alan up in an isolette and loaded him up in the ambulance. Unfortunately there were space restrictions and so no one got to go along with him. Mom and Dad followed in the car from the old to the new hospital. It was quite the operation. All the kiddos got brought over one by one in the ambulances that day.

The move went smoothly and Alan got to his new unit safely. The new facility of Children's Hospital is much nicer than the old. Its pretty and clean and spacious and has rooms for the families.

It was cool being the first kid over there.

Alan was pretty cozy in his new bed. He spent his second weekend at the hospital hanging out waiting for his surgery.

Tuesday, September 25, 2007

First Snuggles

Kangaroo
















One day after going out for a walk, we came back to Alan's bed to a suprise... he was being extibated (getting breathing tube out). This was a perfect opportunity to do some Kangaroo Care (bare skin chest to chest holding that is proven to be medically beneficial to the baby - apparently its what kangaroos do).

It was nice to finally see our handsome little boy's face. Oh and here was when binky first got introduced. He has switched to a slightly different style since but Alan and Binky have been attached every since. It looked so huge when he was that tiny.

















First Feeding

Here was Alan's first tastes at the bottle. He had breastfed immediately after birth but hadn't gotten around to any eating during several days of NICU drama and being intubated.


Saturday, September 22, 2007

NICU days

Alan spent his first week in the NICU at Children's being kept stable until a surgical option could be considered. He needed to stay on blood thinners to keep his Ductus Arteriosus open - its a connection between the pulmonary artery and the aorta in the fetus that normally closes up after birth. His first few days he had to stay intubated (with breathing tube in) to control his apnea spells until a proper dose of meds could be reached.

Alan had lots of visitors. Both his grandmas and grandpas were there with him lots. His aunts and uncles all came to see him - Derek and Claire and Luke and Jaime and Lacey and Jacob. and Cousin Cammie and lots of friends - Kristin and Sarah and Rodney and Mary and Henry and Pastor Aram and Pastor Erik and Debbie.

He had lots of great nurses taking care of him but it was a very scary time.





Friday, September 21, 2007

The diagnosis


Alan's diagnosis was Pulmonary Atresia with intact ventricular septum. Above is a beautiful drawing by Dr. Steve Goldberg who is absolutely the best. Here is a good link to find out more:
In Alan's case, his pulmonary valve, which is where blood exits the right side of the heart to go to the lungs was completely blocked in utero. This made his right ventricle, which pumps to the lungs underdeveloped and pretty much useless. To treat him , the plan was a 3 stage surgical process to ultimately leave him with a Fontan circulation, which would leave him with one functioning pumping chamber of his heart.
The first stage, the BT shunt would be performed right away. It is a tube between the subclavian and pulmonary artery It was a temporary measure to give him some circulation to his lungs until he could grow big enough for the next stage.
He went to the heart cath lab his first week to get checked out further and to have his atrial septum opened up. Alan was born right before the hospital moved to their new building so scheduling his surgery was difficult. He didn't get his operation until about 10 days old in the new hospital.


Thursday, September 20, 2007

September 20 2007

This was the day Alan came into our world. The day started at midnight. Jenna woke up to her water breaking and shouted some expicatives. Got up and spent 4 hours watching Ghost Hunters while contractions began and then headed off to the hospital. A pretty uneventful birth process and our 5 pound; 9 1/2 ounce little buddy made his appearance around 1:30 pm.


We spent a couple hours feeding and snuggling during his awake and alert time. Then we let him go off to the nursery for some of his initial care while Jenna slept off some epidural and Rob got some much needed food.


Here's what he looked like fresh out in the world.
















And here he is all cozy bundled up!

As the afternoon progressed though Alan started showing some symptoms. His complex CHD (Congenital Heart Defect) was undiagnosed prenatally. It was finally decided that he would be transferred to Children's hospital that night. Very scary for all - Rob accompanied Alan in the ambulence and Jenna stayed behind to be discharged first thing in the morning. At Children's, Alan had a rough go of things the first night and ended up intubated. Cardiology spent a good amount of time that first night and the next day with the ECHO trying to diagnose him and come up with some treatment options.