Max’s Story

On April 14th,, 2005 my mom noticed that I wasn’t moving as much as I used to. She went to her doctor and after lots of tries to get me to move…I arrived at 10:44 pm. I was three months early, but very determined to make a statement in the world. I weighed one pound, nine ounces (715 grams) and I was thirteen inches long. I really would have liked to stay on the inside, but it just wasn’t meant to be. My temporary home became the Neonatal Intensive Care Unit(NICU) at UCI hospital in Orange, California.

My first week in the NICU was rough on everyone. I had some awesome nurses looking after me; Jen, Lisa, Sheila, Maria, Barb, Jill, Robin, Ane and Nancy. First I had little tubes that went into my umbilical cord that delivered my food, just like in Mommy. Then I had to have all kinds of drugs to help me regulate my blood pressure and relax me. Mommy is sure I had more drugs in one week than she’s had in her lifetime. I also had to be put on a ventilator to help me breathe. I did not like this, not one little bit. Meanwhile, I had lots of X-rays and ultrasounds, too. Oh yeah, I had to wear these funky shades because I was a “ruddy” color and needed light therapy to help my bilirubin go down. On April 22th I pooped on my own! Everyone got very excited about this….what’s the big deal? Week one was a strange, surreal experience for all of us. Mommy and Daddy were here all the time and every night they sang to me at 10:44pm….”Happy 5th day, Happy 6th day, to you”….they’re so corny!

The medical hurdles I have had to endure or over come:

  • 4/17/05 Echocardiogram found an open PDA valve in my heart
  • 4/18/05 Platelet infusion
  • 4/19 2nd echocardiogram found PDA closed with meds
  • Intubated and switched to an oscillating ventilator
  • Changed to CPAP machine on 4/19/05
  • Started feeding on breastmilk 4/20/05
  • Brain ultrasound to check for bleeding…none 4/20/05
  • 4/21/05 Moved to isolette bed
  • NO AMIMAL PRODUCTS sign on my bed from Barb
  • PIC line put in 4/23/05 to deliver meds etc
  • 4/23 no more food…funny color bile
  • 4/24 re-intubated
  • 4/25 caffeine added to daily meds to prevent apnea
  • 4/25 Daddy is CMV negative and O+…gives blood for Max
  • 4/26 back on oscillationg ventilator
  • 4/26 adverse reaction to Ativan…jerking everywhere
  • 4/28 fluid building up around lungs
  • 4/28 started feeding again
  • 5/2 I weighed 2 lbs today
  • 5/5 Diagnosed with Chronic Lung Disease
  • 5/6 Mommy got to hold me for the first time!
  • 5/7 Daddy held me for the first time!
  • 5/14 First month birthday…back on CPAP
  • 5/17 Swithched to VaporTherm…oxygen mask with vapor
  • 5/26 Nasal CPAP…to cut down on nose bleeds
  • 5/26 I weigh 2lbs 13.75 ounces
  • I’m making a funny noise called “Strider” when I breath. They are giving me lots of different breathing treatments to try and fix this
  • Dr. Sills thinks I have a floppy Larynyx…I might outgrow this
  • 6/4 I weigh 3 lbs!
  • I’m trying really hard to breastfeed, but it’s not really working…I like getting that milk really fast with the feeding tube
  • 6/10 My “strider” is getting worse
  • 6/14 Maria insisted that an ENT look at my throat today…he says there’s something below my vocal cords and they will have to do surgery
  • 6/15 I go into surgery and Mommy and Daddy freak out for the next 3 hours! Turns out I had a sub glautic granuloma (fancy word for a growth) that was blocking 80% of my airway. Dr. Ahuja was able to remove it through my throat so I didn’t have to have a tracheotomy . . . .whew!
  • I didn’t wake up for 30 hours after the surgery… .but now I can BREATH. now I’m ready to go
  • I gain weight rapidly and everyone is impressed with me. I move to Room 3 (Feed and Grow room) where it is much quieter and I get a real crib
  • July 2, 2005…after much discussion…I finally get to go home. Around the NICU in 80 days…I see an after school special on me