Charlie is 9!

Charlie just had his 9th birthday! He doesn't like cake, so he settled on an ice cream sundae. We still aren't seeing any signs from the aftermath of his traumatic birth. He does have slight ticks on and off, but that is supposedly normal for any kid. I guess we will never know. He is the healthier (gets sick less) of my 2 kids and he excels in school. He actually received a letter in the mail last year asking him to test for the gifted program. He really likes video games and his newest obsession is Beyblades.

Charlie is 8 and thriving

Just a small update-Charlie ended 2nd grade "exceeding expectations" on all of his reading, math, cognitive, etc. testing. He is already reading Harry Potter books.

6 and almost aced his first math test!

Charlie is doing so well in school.  His teacher had no concerns at conferences.  Such great news!!

5 and counting

Charlie is thriving in preschool and his teacher even said he is ahead of the game compared to the other kids his age.  Never thought this would happen.  Makes me so proud to be his mom.  The strength and brain power he has amazes me daily.

Charlie is 4!

Just back to check in after another fantastic year.  Charlie is still doing wonderful and is ahead of the game.  He passed his pre-K screening like a pro.  Keep sharing your stories!!  I love to hear from all of you.

Charlie is 3!

Update: Charlie just had his golden birthday on January 3.  He is happy, healthy and thriving.  His language skills are phenomenal. He seems so much older than he actually is.  Sometimes I think that the cooling blanket gave him a boost to his brain power because he is one smart little fella.

Please keep sharing your stories with me!

2.5 year NICU check-up

Charlie just had his last official NICU check-up and we are in the clear!!  He tested above average for a "normal" child in his age group for motor skills and speech, and tested average in the cognitive area.  The neurologist had absolutely no concerns and told us that it wasn't necessary to come back unless we have concerns in the future.  They were very impressed and so were we!  It is amazing to see what your child can do when being neurologically tested. I never knew he could do some of the things that he did.  This was quite the milestone in Charlie's life and it is so exciting to think about how many more he will have in the future.  Cheers to Charlie!

Charlie is 2!

The time has flown by.  Charlie is 2 years old tomorrow!  He is walking, talking and getting into trouble.  He is a very busy boy.  I am proud to say that he is normal in every possible way  (above normal if you ask me).  He was discharged from special education (Birth to Three program) about 6 months ago.  Our therapist said that it is very rare that they discharge anyone, but Charlie was doing everything a kid his age should be doing and beyond so they didn't feel that he needed their services any longer.  So exciting and impressive!

To those of you reading this, please don't hesitate to contact me.  I had 4 people over the past year contact me to tell me how helpful my blog is and I hope it is as helpful for you.  I would love any cooling blanket resources and stories you may have too.

Charlie's 1-year NICU check-up

Charlie just went into the clinic for his 1-year NICU check-up.  He went through some motor, communication, social skill testing and passed with flying colors!!!  What excellent news.  We knew in our hearts that Charlie was just fine, but it was great to get reassurance from the professionals.  The doctors basically told us that we are finally "out of the woods" and that we should not be worrying about any future regression and/or roadblocks.  They said that they would not be surprised if the school district discontinued their services for speech and occupational therapy, but if they were still willing to provide the services, take it!  After all, it can't hurt.  He will still need to go back for future check-ups just to make sure he stays on track.

If you are reading this and going through similar circumstances, keep your head up and just know that miracles can happen.  We will be forever thankful for the treatment Charlie received, which brought him to where he is today.

9-12 months-Charlie is one year old!

Charlie turned one year old on January 3 and what a special day it was!

Charlie continues to meet his milestones and his evaluations still put him ahead of the game.  He is in the 75-90th percentile for everything.  The occupational therapists from the Birth to Three program are still visiting Charlie every other week.  He has completed everything he is supposed to complete at 12 months.  The OT will continue to make her visits until he is walking.  Right now, he takes about 3 steps without any assistance before he topples over.  I think we are almost there.

He is growing up too fast, but we are glad to see he is progressing exactly the way he should be.  His motor skills, social skills and communication skills are exceptional.  What a miracle.

4 months-8 months

Charlie continues to meet his milestones and his evaluations actually put him ahead of the game.  His 6 month check-up with the pediatrician was a success.  He ranks in the 95th percentile for height and 75th percentile for weight.  The occupational therapists from the Help Me Grow-Birth to Three program are actually coming to our home less frequently now because Charlie is doing so well.

At 8 months, he continues to be the happiest little baby I have ever encountered.  He is now babbling (saying dadada), crawling, scooting, sitting, standing up with little to no assistance, eating finger foods, and just starting to hit the separation anxiety stage.  So far, there are no signs of any type of brain damage, which continues to be quite a relief.  It is so fun to watch him grow and continuously learning and doing new things every day.

Charlie's Story-The First 4 Months

Bringing Charlie home was a great feeling, but came with a lot of unknowns.  Just like any other parent, we learned something new every day.  Charlie had his own in-home nurse that visited weekly for the first couple of weeks and discontinued their service on January 24, 2011 because he was doing so well.

Charlie had his one month check-up on February 1 with the pediatrician. He weighed 7 lbs 8 oz, so he  gained 11 oz. in 2 weeks. The doc didn't have any concerns and said he is a very healthy little boy.

We had two women (occupational therapists) from Help Me Grow-Birth to Three Early Intervention Program out to our house the same day. This program is a public school special education program designed to serve infants and toddlers who show delays in their development. In Charlie's case, it is more of a preventative procedure. They will track his development until they don't think he needs it any longer.

He is a great sleeper and eater.  He has been meeting all of his milestones and is actually ahead of the game.  Our occupational therapist continues to be amazed at her bi-weekly visits.  He is smiling, cooing, squealing, making great eye contact, rolling over, eating solid foods, has great head control, is grabbing objects at midline and transferring them between his hands, sucking on his toes (flexible fella), laughing, and much more.

On Friday, May 20, Charlie had his 4-month NICU check-up at U of MN Children's Hospital. He was seen by a nurse practitioner, an occupational therapist and a neonatologist. Everything went very well and all of the doctor's were very amazed by his progress and optimistic about his future. They did not see any signs for concern, but reminded us that things could change. He told us that the hospital just received permission 2 months ago to follow and research cooling blanket babies, so Charlie just missed the cut.  I will try to keep posting updated information and research as I find it.  

I continue to be amazed by Charlie's strength and abilities.  I honestly don't think that he would be where he is today if it wasn't for the cooling blanket.  Stay tuned for more posts and follow-up as Charlie meets his milestones and continues to progress.

Background on Cooling Blankets

Four out of every thousand babies born in the U.S. suffers brain damage. Traditionally, there was nothing doctors could do to prevent the lifetime of disabilities that could follow besides supportive care. But now, they're using a simple blanket to save brains and change lives. The cooling blanket is a new hypothermia treatment that may prevent or minimize the long-term consequences of brain injury due to hypoxic-ischemic encephalopathy (HIE), or loss of oxygen at birth: cerebral palsy, cognitive and visual impairments.  Perinatal hypoxic-ischemic brain injury is now understood to occur in two phases. The first occurs during the peripartum period when the fetus's brain is exposed to asphyxiation because of inadequate blood flow supplying oxygen to the brain. The second occurs in the hours after birth and is due to secondary energy failure.

Induced hypothermia (the cooling blanket) aims to minimize the damage or prevent infants from experiencing this second phase of brain injury. It involves placing an infant onto a cooling blanket, which quickly reduces the baby’s core temperature down to 33 degrees centigrade. The normal baby’s core temperature is around 36.5 degrees centigrade. That three degree decrease in temperature actually helps any areas of the brain that are potentially injured. The cooling must be initiated within six hours of birth-preferably as soon as possible. The infant is cooled for 72 hours and then gradually warmed. The babies are monitored with amplitude-integrated electroencephalogram (aEEG), serial neurological examinations, and laboratory and imaging studies before, during and after the procedure. Original research studies on the cooling blanket came out in 2005.  There were three large randomized clinical trials that demonstrated that cooling was safe and that it could help babies with brain injury. HIE babies are divided into three categories – mild, moderate, and severe. Cooling primarily helps babies with moderate encephalopathies.  Cooling is a state of the art therapy that is confined mostly to academic medical centers currently.  It is still very experimental and there has been very little research done.

The cooling blanket is a very simple device. It circulates water, and that water is cooled to a certain temperature. It draws heat away from the baby as this water is circulated and cools their temperature down to 33 degrees.  It’s been shown to be a very safe therapy because the temperatures used are in the moderate category of hypothermia, and complications associated with hypothermia aren't present until you are less than 30 degrees centigrade.

I am still trying to find stats on how many hospitals have the cooling blanket and how many babies have been cooled.

Charlie's Story-Birth

Charlie is one of 30 babies that was eligible for the cooling blanket at University of Minnesota Amplatz Children's Hospital since they started using the new remedy approximately 3 years ago. 

My pregnancy with Charlie was great and without any complications, so I was expecting a pretty smooth/normal birth.  My story starts on Christmas Day, 2010.  I went to the hospital when my contractions were about 2 minutes apart.  They sent me home because I was only dilated to two.  I went back to the hospital on Tuesday, December 28 with contractions and amniotic fluid leakage.  I was sent home again because I was still dilated to two and the fluid I was leaking tested negative.  On Sunday, January 2, 2011 at 11 a.m. I went into the hospital for the third time, after my water broke, with a fever of 104.  I started pushing around 9 p.m. until about 12:00 a.m.  After a double episiotomy and failed vacuuming times 3, the doctor decided that it was time for an emergency c-section. By this time, I could feel everything including the doctor cutting me open during the c-section, so they had to knock me completely out.  Surgery lasted about 4 hours because they cut my bladder. Our amazing little boy, Charlie, was born at 12:32 a.m. on January 3, 2011 weighing 6 lbs 9 oz and 18.5 inches long after being vacuumed for a 4th time during the c-section.  He was born at 37 weeks and 5 days with an Apgar score of 0/6/8 at 0, 5 and 10 minutes.

Charlie's heart rate and respiratory effort were absent at the time of birth because he was stuck in the birth canal for an extended amount of time (they are guessing that my pelvis wasn't big enough to birth a child vaginally).  They presumed he had sepsis because I had an infection in my placenta, which was caused by my amniotic fluid leaking for a week prior to his birth. They got him breathing by bag valve mask and intubation after 30 seconds of being out of the womb, but he was in distress for a longer period of time inside of the womb which led to the emergency c-section.   He was rushed to University of Minnesota Amplatz Children's Hospital where they have a top-of-the-line Neonatal Intensive Care Unit (NICU).  He was in danger of brain asphyxia, so we were SOOO lucky that this hospital had 2 cooling machines/blankets available. Charlie was placed on the cooling blanket and put into a medically induced coma for comfort.

My husband came into the room crying after I woke up from surgery and I was super confused. He told me that Charlie may have suffered from brain damage during the birthing process. I will remember that moment for the rest of my life. I was finally able to see Charlie 2 days after he was born. He was very swollen, cold, stiff, and his head felt like a bowl of Jell-O, but still the cutest baby I had ever seen. It broke my heart to see him intubated, cold, and naked with cords and monitors strapped to every inch of his body.  He was deemed critically ill for the first week of his life.  His neonatology assessment was:

• Critically ill term male infant
• Significant perinatal depression with Apgars of 0/6/8.  Responded well to resuscitation efforts, but at risk for multi-organ dysfunction and HIE.
• Respiratory failure required vent support.
• Hypotension
• Abnormal neuro exam without seizures
• Meets criteria for therapeutic hypothermia
• Presumed sepsis with possible PPROM
• Subgaleal hemorrhage
• Potential coagulopathy
• Potential jaundice

He was taken off of the cooling machine on Thursday, January 6 and started the warming process. His cultures came back normal, which meant he was free of infection/sepsis. We received his MRI results back late Thursday evening and they were as follows:

• No signs of hypoxia (lack of oxygen to the brain)-best news EVER
• Small skull fracture with a very large hematoma (above the brain)
• Small hematoma right above his brain, but behind the motor strip in the gray matter of the brain

We still aren't out of the woods, but the doctor is very optimistic. He will continue to be monitored by the NICU unit at 4 months, 1 year, 2.5 years and 5 years old.  He will also be seen by an occupational therapist from the school district weekly until he is 1 year old.

He just kept progressing every single day. The day after he was taken off of the cooling blanket, he pooped for the first time and was finally moving around. He was taken off of his ventilator and breathing room air.

Saturday night was probably the best night of our lives. He pooped, cried, ingested milk through a feeding tube, sucked on a pacifier and opened both of his eyes! His eyes were completely swollen shut until that night.

Monday, a week after his birth, he was able to eat without the feeding tube.  We stayed at the NICU in one of the family rooms for 3 nights so I could feed him.  The hospital started to feel like a prison, but we needed to get his feeding consistent before they would send us home. Charlie had an ultrasound on Wednesday, January 12 and it came back stable, meaning his fracture was healing and not growing.

On Friday, January 14, Charlie was discharged.  The nurses were all shocked that he healed so quickly.  They called him the "miracle baby." He brought a couple of them to tears when we left. It was a bittersweet moment.  We were happy, but scared to take him home without all of the nurses and monitors that had been watching him so closely for the past two weeks.

There were so many things to be thankful for despite the circumstances.