Wednesday, January 30, 2008

Long Day........

Yesterday was a long day, but we are home and it is over. His g-tube site is healing well, she said it looks great. He still has a little PDA so we will have to keep following up on his heart, but everything is fine. No word yet on the brain ultrasound, but they weren't concerned in the first place, just covering all the bases. Alex was so good, he missed both his naps while in St.Louis, but stayed happy, and smiled for all his friends when we visited the NICU, some of those wonderful doctors and nurses qualify as family now, we love them.

Monday, January 28, 2008


I caught a sweet moment with Alex and Joel sitting on the couch together.

Things will slow down soon!

Tomorrow we go to St.Louis for a NICU follow up, basically they weigh him, and increase or decrease his feedings, at his last follow up his feedings actually got decreased because he was getting too fat! He is 17 pounds at 4 months old, this puts him in the 75th percentile for his weight, his neonatologist wants him to slow down on the weight gain, but I say he almost died let the kid have some fat rolls. Tomorrow we also have a echo to hopefully look at his heart for the last time, the structure of his heart is normal, but since he had pulmonary hypertension when he was born they want to follow up, I pray for the last time, as this will be his 4th echo. They are also going to do an ultrasound on his brain, and GI will be looking at his peg tube and tummy to make sure everything is healing normally. After tomorrow our doc appointments will start to slow down, he has an MRI in Feb, and then we will schedule a date for his surgery on his spine. Once this surgery is over we will be over the big stuff!!!!!

Wednesday, January 23, 2008

I need to take a breath!

This is how my calendar looks:
Yesterday was physical therapy
Today was speech therapy 8:30am
Tomorrow occupational therapy and ST in Springfield (which we love)
Parent teacher conference on Monday
Tuesday we go to St.Louis for NICU follow up, a heart echo, a ultrasound, and a GI follow up
Then Wed the cycle starts all over again,
I have to pump 4 times a day some where in between all this, and feeding Alex every three hours, and lets not forget I have two other kids who probably have forgotten who I am. Forget about laundry, and house cleaning, (thanks mom):)
I need to take a breath, but Im under water..................

Tuesday, January 22, 2008

A better day...............................

Today was a better day, Alex had his visit from Chris his physical therapist, and did such a good job, we are working on his shoulder strength, he hates tummy time, and the only way to get strong shoulders is pushing up on your tummy. Alex is getting alot better with his hands, it seemed to happen after he was waking up from the anesthsia Friday, maybe it was the drugs triggering his muscles to move and get stronger:)???? Whatever it takes, right:)
Joel made it through swimming lessons without crying, and so like all good parents do we took him to buy a new Wii game, hoping to motivate him to enjoy swimming, ahh the American way.

Monday, January 21, 2008

I miss my baby having a tube in his nose!?!?!?!?

Our wonderfully created routine is all messed up, we had a flow going that has been disrupted by this new tube. I know it is the step in the right direction, but we have to get sleep, and a routine in order to survive. So right now I miss my baby having a tube in his nose, I bet no one has ever said that before. Today Alex gets his 4th RSV shot, I heard it is bad this year so we are thankful that he qualified to get this.
Today is a hard day.

Sunday, January 20, 2008

Ready to share

I havent been ready to share the news that out third son Alex, was diagnosed with RTS in the NICU. The news hit me hard, and I am still recovering, grieving, hoping, and learning. One step that I am ready to take is to share this news and this blog site with all of you. One of my fears is that Alex will be labled "that boy with the syndrome", I know all of you that love us, and love Alex wont lable, but you will love him for whoever he becomes. So here I go, taking a step forward in this new journey in my life. I have to take it for my family, for myself, and for my ALex.