Saturday, February 19, 2011

life is good

Actually GREAT! o.k., that's a little Tony the Tiger, but I don't care.
Max is doing really well.

As of November, Max's 2nd birthday, his cardiologist felt there is no reason to see him again.
We just need to get through this season of RSV/Flu, etc.

Last year, Max and I had to go on complete lock down for the winter season. This year we were not quite as strict but we were still careful.
Spring has come early in Atlanta, but we can't get too comfortable.

There will be a detailed update soon.

Love the life you live,

Tuesday, December 29, 2009

on and on

This isn't so much a blog for vanity as much as it is a blog for sanity.

You see, my son Max and I have been on "lock down" since September 2009 and will remain in our compound until April or May of 2010. Germs are the enemy so we keep them away by staying away from people. Family and friends included. My husband travels for work, so we take extra precaution with him, but other than that our front porch is our best friend and the only way to catch a little sun light.

It all began August 29, 2008 when my water broke at 18 weeks. (PPROM) From the beginning the doctors said the chances of the pregnancy surviving were little to none. If by some stretch the pregnancy went on the chances of our son surviving out of the womb would be very low. All I knew was that my baby had a strong heartbeat, we had avoided labor and infection so we carried on knowing the possibilities good and bad. The doctors were painfully honest but also supportive for the most part. We had a couple doctors that obviously thought we were crazy. At one point one of my doctors felt I was in denial and promptly sent a neonatologist to see me to remind me of the odds and how they were truly stacked against us.

12 weeks in High Risk Pregnancy on strict bedrest. I didn't get up for anything. I did not walk for 12 weeks. I did not sit up for 12 weeks I eventually was allowed to have a bedside toilet which was one step away but I later realized that was only because the doctor felt the pregnancy wouldn't survive so I may as well be comfortable in the mean time. My baby had 0-1cm amnio fluid for the duration of the pregnancy. At 29.6 weeks against all odds our son Maxwell was born. 2 pounds 3 ounces.

Max's lungs did in fact go into respiratory failure around 14 hours after delivery. The outlook was pretty bleak initially. The doctors felt Nitric Oxide was the last ditch effort and it didn't look promising but they felt it was worth a try. It worked.

We had many ups and down in during his time in the NICU. It was months before we truly realized he would survive.

Max spent 4 months in the NICU and special care nurseries at Northside Hospital in Atlanta. The doctors and nurses were simply amazing.

Max came home on March 7th. on March 17th he went into respiratory distress and was rushed to emergency were he was reintubated and was transferred to Scottish Rite hospital where he stayed for 6 weeks. 4 of which were on a vent and again nitric oxide. Once off the vent he rebounded remarkably well and within 2 weeks he was sent home. He has been home ever since.

It has been a rough journey with miracles scattered all the way through it. Through this journey we are learning the strength of this little boy. He is nothing short of amazing. And he has perfect comic timing.

I have been keep a jounal on CaringBridge since March which covers stricly Max. I have come to this blog spot to throw out the universe not just his journey, but mine and my husband's journey also. Maybe someone will read it and relate maybe no one will ever see this. All I know is it is a way to work through this time of isolation and way to put down n words what amazing bonding experience this has been so far and I know will continue to be.

I've been typing for a while...which makes me miss my son. So off to see his shining face.

Thursday, May 7, 2009

Max and the magic hookah.

Max has been home for a week and a half now. It's been wonderful and exhausting.
This is an example of one of the lung treatments that Max gets at home. This one takes about 45 minutes (not fun at 1am). He gets a variety of treatments every 4 hours all day and night. The meds and treatments can take up to 1.5 hours to complete. It's a lot for the little guy, but these will help him get better.

we spend so much time giving meds and treatments that it's always a treat to kick back and relax.
my little man :)