7.27.2012

aiden's story (part I)

We always knew we would have an Aiden.  We had his name picked out probably 7 years ago.  We just didn't know he would have a partner in crime. 

Aiden is our Baby A.  Ultimately, he is the reason they were delivered.  At 4:30am on Sept. 25th, 2011, Aiden's placenta abrupted.  There was too much blood, and if they didn't operate, we would have lost them.  Thankfully, I was already in the hospital.  

Aiden was born at 5:15am weighing 1 lb. 10 oz.  He was only 25 weeks 2 days gestational age.  Which means I was only 5 1/2 months pregnant when I delivered him.  I can't tell you any more details because I was knocked out.  This is the first picture we took of him:

Birth day

He looked like a salamander.  His fingers and toes were so long and his skin was transparent.  They asked if I wanted to touch him.  I didn't.  I was afraid to break him.  He was intubated, which means a machine (a vent) was breathing for him and his eyes were still sealed shut.  He was bigger than I thought he would be, which was a relief.  

On Day 2 of his life, they were able to take the breathing tube out because he was doing well.  That didn't last very long.  He was re-intubated and that night, he had his first of many blood transfusions.  If you ever wonder if you should donate blood, you should.  Without countless blood transfusions, Aiden would not be here today.  
3 weeks old
 Aiden spent a total of 139 days in the NICU.  Most of those days were spent on some sort of breathing and feeding support.  He spent 8 weeks on a vent, which means he wasn't able to breathe on his own at all.  Once he was off the vent, he would have episodes where he would forget to breathe.  On his worst days, he was bagged in order to begin breathing again.  By the time he was 8 months old he had endured 6 surgeries, and there are more in his future.  He battled an infection that lasted two weeks.  He had pneumonia and a collapsed lung more times than I could count.  There were days when I wasn't sure if we would get to take him home.   

Nov 17, 2011 - The first time I held him
3 months old - 5 lb 4 oz
At 9 weeks old we were told that he had a cleft palate.  This interfered with him being able to feed from a bottle, because his suck was ineffective.  They didn't actually start his PO feeds (oral feeds) until after his due date, which is very late for preemies.  His last few weeks in the hospital were focused on getting him to take all his feeds orally, while maintaining his breathing and heart rate.  He finally came off oxygen a few days before he was discharged and on his last day in the hospital, we were told that he had failed the newborn hearing screen.   


Feb 5, 2011 - No more feeding tube!
Feb 8, 2011 - No more oxygen!
Aiden's main diagnosis is Hydrocephalus.  It it directly related to his prematurity.  Babies who are born before 30 weeks gestation have a high risk of developing an IVH, which is a brain bleed.  Aiden developed a bilateral Grade III & IV brain bleed, which are the most severe.  As a result he developed a blood clot in the ventricles of his brain, preventing the CSF (cerebral spinal fluid) from circulating back through his spine.  Ultimately, this causes pressure on the brain resulting in brain damage.  In addition, his MRI showed evidence of PVL (periventricular leukomalacia) which is another form of brain damage.

Aiden today - around 15 lbs.
Aiden spent the first 5 months of his life in the hospital.  He faced many challenges to get where he is today and faces many more ahead.  But he is fighter and he shows us that everyday.  He has made me more proud than I could ever imagine and he is my hero. 


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