Category Archives: NICU

Throwback Thursday: My, how time flies!

You may have seen a picture in the last post from the March of Dimes event that was a blurry image of some typed words.  If you worked extra hard, you may have even been able to make out those words.  Even though those words were mine, the story was ours, they appeared the same to me the moment I saw them…distant and blurry.  It is not that I was having a visual problem or, perhaps, started the wine a little early, it is just hard to believe, sometimes, that it all really happened.

It feels so long ago that “everything happened.”  I often say it was a lifetime ago, but that is surely an understatement.  If I remember correctly, I wrote those words as the intro to our CaringBridge site that we used to keep friends and family updated for the first year.  It is so strange to even imagine being in that place at that time.

Flash forward to today…we are so blessed with our amazing fighter.  We have incredible plans and opportunities on the horizon and we have incredible new people in our lives.  But, for today, here’s to the memories…

Almost a year ago, my husband, Bryan, and I set off on a trip from our home in Northern California to my hometown of Bloomington, IL.  We were expecting twin boys and my family friends were throwing us my first baby shower.  However, 2 days before the shower, 2200 miles from home, I started experiencing some concerning symptoms and went to the hospital to get things checked out.  The doctors found that I was 90% effaced and 1cm dilated.  I was put in a helicopter and flown to the nearest hospital with a NICU.

Because my babies had not yet reached viability (24 weeks) I was given very bleak expectations.  The amazing doctors at St Francis in Peoria, IL gave me medicine to delay labor and put me into Trendelenburg position (lower half higher than upper half) and there I stayed praying that my boys would stay safe inside as long as possible.

It worked, I was stable.  My husband flew home because he had to return to work and we planned to have him visit every few weekends until the boys were born.  However, the evening of August 3rd, I started having contractions and they couldn’t be stopped.  I called Bryan at 3am and told him he needed to get back to Illinois as quickly as possible.

On August 4th, at 7:52am, Logan Robert was born at 23 weeks 4 days gestation.  He was only 1lb 3oz but he survived.  The doctor was able to keep our other baby, then known as Mac, of Mac and Cheese, in my womb where we prayed he would stay.  I went back into Trendelenburg and Cheese went to the NICU (don’t worry, we officially named him Logan once Bryan arrived that evening).

The next 48 hours were a whirlwind.  Bryan made laps between the NICU and L&D units bringing updates on our sweet miracle day and night.  He never actually slept.  One of our nurses finally gave him scrubs since he didn’t have clean clothes and even brought him Tshirts as our stay grew longer and he hadn’t had a chance to pack appropriately.

Again things seemed stable…

The evening of August 5th, I started having contractions again.  My body couldn’t hold Mac in any longer. At 12:26am on August 6th, Jacob Bryan was born at 1lb 13oz, 23 weeks 6days gestation.

With both boys now in the NICU, we began life in a world we had never really known existed.  A world where things aren’t really one day at a time, but one hour or one minute at a time.  A world where they say “don’t get too high on the highs or too low on the lows” and “it’s a marathon, not a sprint.”  A world where miracles happen every day and God’s grace is everywhere.

Throwback Thursday – Holding a baby the size of an ear of corn

After a baby is born, most moms delight in having a plump, sturdy baby plopped down on their chest.  That was not our reality.  Since Jacob was born over 16 weeks early, after he was born, he was whisked away to the Neonatal Intensive Care Unit.  It was over 2 weeks before I got to hold him for the first time and when I did, although my heart and arms were aching for the moment, I was terrified.


For those who do not know our whole story, Jacob and our angel, Logan, were born when we were visiting my parents in Illinois…2200 miles from our home in California.  Bryan had to return home once things were stable to go back to work and I stayed with Jacob in Illinois.

I remember the day I held Jacob for the first time like it was yesterday.  He was so SO small.  He had an IV, PICC line with several ports, sensors and, of course, oxygen.  He had just made his first attempt off the ventilator and had been stable for long enough that the Neonatologist felt he was stable enough to give “Kangaroo Care” a try.  “Kangaroo Care” is when mother or father hold the baby skin to skin.  It is proven to help regulate temperature and heart rate and is very therapeutic to both parent an child.  After all, they’ve been through A LOT to get where they are.

Again, I was thrilled to finally hold my baby, but also terrified.  He was only 12 inches long and had emergency bowel surgery only a week earlier.  To make matters worse, Bryan was back in California, so I couldn’t even share the experience with him.  Although, we certainly tried.  Unfortunately, technology failed us and we couldn’t connect the FaceTime to let him watch it all.  You can hear him in the video running around trying to find a solution.  His tone may sound rough, but he is just frustrated things are not working out.  We made the best of it and had wonderful helpers video the whole experience.  I share it with you now.  Our sweet little fighter when he was so small.

Throwback Thursday – 3 NICU’s

Most families haven’t ever set foot inside a Neonatal Intensive Care Unit.  We certainly hadn’t before “everything happened.”  And, through our journey, we can now say that we are quite well versed in 3 of them.  The three were very different and each had its pros and cons.

Children’s Hospital of Illinois, St Francis Medical Center, Peoria, IL

This is where it all started.  Our first glimpse into this world.  If this all had to happen, I couldn’t have asked to be at a better place.  The unit was brand new and state of the art.  We even had our own room.  There are not words to describe the how amazing the team is.  They cried with us, celebrated with us, held our hands and, most importantly, truly loved our baby. 

Reading Jacob his first story.
Reading Jacob his first story.

There’s the Neonatologist who came in on his day off to check on us and Jacob after his emergency surgery when he was only a week old. The APN’s who came by our room after their shift just to check on us…and I truly mean us, not just Jacob.  The respiratory therapist who told 290jokes to keep us smiling. The cardiologist who came back from vacation early to do Jacob’s PDA surgery and, although reluctantly, agreed to recite the song I had written for Jacob to get through this new obstacle.

Jacob's PDA surgery song.
Jacob’s PDA surgery song.

The Neos, who, every single day, would put up with my million questions as I attempted to get every bit of information into my notes so I could relay it all to Bryan.  The Infectious Disease doctor with his crazy shirts.  The surgeon, who’s gruff shell melted away as he told me what an amazingly strong little boy Jacob was.  The patient support team who worked behind the358 scenes, not only cheering us on, but helping us get home.  Even the unit secretaries who made sure we had a place to stay on the scary nights and made us feel welcome each day. 

A bib made especially for Jacob by one of the Unit Secretaries.
A bib made especially for Jacob by one of the Unit Secretaries.
Our core team of day shift nurses.
Our core team of day shift nurses.

And the nurses.  Oh, the nurses.  They are truly angels on earth.  We had parties when he finally tinkled.

Jacob's first tinkle after his first surgery.  We prayed and sang and waited so long for it!
Jacob’s first tinkle after his first surgery. We prayed and sang and waited so long for it!

They taught me how to change his teeny tiny diapers.  The schlepped countless bottles of milk back and forth as I was constantly pumping.  The lifted me up when I was feeling down.  They prayed with us, were scared with us, cheered with us and cried with us when we left.  The checked on us when they were off or working in another neighborhood or unit.  They left us little notes and never minded my calls through the night to check in. 327 They are our family and always will be. 

The only possible con of this amazing place was its location.  It is 2000 miles from our home and an hour from my parents house.  Bryan had to fly back and forth on weekends and the trips were never easy.  One was such a disaster it took him over 24 hours to get home.  It was incredibly difficult to be separated through this.  I am so grateful to my parents and my extended Illinois family for their support through it all. 

The other NICU’s hardly stood a chance to even compare to CHOI, but they tried.  After 2 months, when Jacob was stable enough, we had to leave…but that’s a story for another day.


Wow! How far he has come!

So, thanks to a special helper, I was able to catch up on some organizing today.  Love you, Lolli! Since we are still working on unpacking from “The Great Flood of 2014,” I have plenty of boxes to go through.  I came across some trinkets from Jacob’s first NICU, Children’s Hospital of Illinois in Peoria.  I cannot say enough about the AMAZING staff there.  I promise, we will come back to see you all one of these days.  In the meantime, check this out!!013

A special shout out to nurse Robin for making this card for Jacob!  We love you all!!

An here’s one when Jacob was about 3 months old.  I think this was the day of Jacob’s renastomosis surgery.  I will write more about Jacob’s 9 surgeries another day.  It certainly was taken at Sutter Memorial.  What an amazingly tough little guy!



So, what does “defying the diagnosis” mean?

Jacob has been given an laundry list of diagnoses.  First came profound hearing loss, then cortical blindness and potential cerebral palsy.  We even had someone tell us “your son will never see, hear, walk or talk.  No matter what you do.”  As you can imagine, we were terrified.

Thankfully, we found The Institutes for the Achievement of Human Potential.  After reading the book What to do About Your Brain Injured Child by Glenn Doman, we knew we had found our hope!  The team at IAHP has been working with and successfully treating brain injured children, like Jacob, for 60 years.

what to do

You see, all of these labels that he has been given are simply symptoms of the brain injury he sustained at birth.  That is actually GOOD news because it can be fixed.  Our goal now is not to just live with these diagnoses, but to help Jacob heal and overcome them!

When Bryan and I attended the What to Do course at IAHP we learned a VERY important fact…brain growth can be slowed, brain growth can be stopped AND brain growth can be SPEEDED!  The best part is that the research the staff has been conducting over the last 60 year has uncovered just how to do that.

Our class with the staff at IAHP. Can you find us? Its like where’s Waldo!

It is really simple actually.  The staff uncovered the critical steps in child brain development and what causes these steps to occur.  We simply replicate this natural process with increased frequency, intensity and duration to rebuild the damaged pathways.  You’ve probably heard of neuroplasticity…well, they have been doing just that all along!

Jacob at his first IAHP visit
Jacob at his first IAHP visit

The other extremely important factors are giving Jacob the best nutrition possible so he has everything he needs to regrow the damaged tissue, improving his breathing and creating an environment that is ideal for his development.  I will write more about Jacob’s nutrition, respiratory program and what we do to give him the best possible environment in another post.

What this adds up to is a very intense program of stimulation and opportunity in recognition of the orderly way the brain develops.  Jacob does therapy all day every day. Every minute is on purpose.  At our last revisit, another mom asked me how many hours a day we spend on Jacob’s program.  The simple answer is all of them!  Yes, its a lot.  Yes, it takes a team. Yes, its hard.  But, YES, its working!  The clearest evidence of this is the change visible in Jacob’s brain via MRI.

Jacob Scans

This may be hard to understand at first, but just look at the increase in the dark parts of the scan on the right!

So, here we go!  Off to prove the naysayers wrong and delighting in every minute of it!  I look forward to posting videos of Jacob’s incredible improvement.  I welcome any questions and I cannot recommend more highly that everyone read the books written by Glenn Doman and the staff at IAHP.  They help both hurt children and well kids!

No time like the present…

July 25, 2014

Two years ago, possibly to the day, our world was turned up-side-down.  One day, my husband, Bryan, and I were hopping on a plane to my hometown, Bloomington, IL for a baby shower for our twin boys and the next I was strapped to a gurney, loaded onto a helicopter and given the most devastating news I could imagine.


Our world, since then, has been far, FAR different than we ever imagined.  We’ve walked hallways we hardly knew existed, had conversations we never fathomed and prayed harder than ever.  We also met some of the most amazing people, who have shared so much love and support, and we’ve also learned so much about life, love, faith and human development.  We have fought extraordinary battles and have had amazing victories…with plenty more to come.


My hope, with this blog, is to share our story and empower other families to fight for their children.  I must stress that I am NOT a doctor, therapist or a writer.  I am a mother.  I hope that our story helps, heals, brings a smile or inspires you to believe in the amazing power of children.  I hope you enjoy our story…