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.


There’s nothing better than a good night’s sleep

Ahh…sleep. Why must you elude me?

My sweet little man has the most unpredictable sleep schedule. The only thing we can plan on is that as soon as we think there’s a pattern, it changes. Thankfully, once he goes to sleep he’s usually down for 12 hours…unless there’s something that needs to be done. And, when all else fails, there’s our secret weapon…mommy and daddy’s bed. No child shall resist it’s powers for slumber!!





But just when you thought it was safe to start working on that project…


A great new option from The Institutes for the Achievement of Human Potential

The team at IAHP has had one main goal for the last 60 years….to help as many children around the world as possible. This great new online option is a fantastic step towards reaching more families. Check it out…

For over half a century we have been learning how to help hurt kids and how to teach parents what we have learned, so that they can help their own children at home. For the first time in our history we are offering this information online. Join us on the Pathway to Wellness:


Please help us share Jacob’s story


So you may be asking yourself, “Why share this story?  Why put all of this out there for the world to see?” 

About 18 months ago, I was sitting alone, scared for my baby and searching for someone who knew anything about what we were going through.  I can tell you from personal experience, walking in our shoes was very hard.  And not stiletto, “they hurt but boy do they look good” hard, but really, down to the core, tear your heart out, hard. 

Luckily, or as I believe as a part of His plan, I ran across a mother’s blog.  It was so strange how it happened.  The page was a disaster.  The words were overlapping pictures and I had to strain and stretch the page to make anything out.  I couldn’t explain why I was so compelled to get to message of this page, but thank God I was.

I was searching for information on coritcal blindness, blindness due to a problem in the brain, not the eyes, and I found her story.  Because of her story, I found IAHP, and because of IAHP our baby is recovering his vision. He was blind and now he can see.

I want to give that opportunity back to any other family who may need it.  We’re out here, we understand and we want to help. 

So, please, help us get our story out there.  Share this page on Facebook, tell a friend, follow the blog.  You never know who may need it. 

Now here’s some more cuteness from our impromptu photo shoot!

photo 22photo 5photo 3photo 2photo 1

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!



The many faces of Jacob at mealtime

Getting the proper nutrients into Jacob is one of our highest priorities. IMG_4474 It makes sense.  He must have the building blocks necessary to do all the building we want him to do.  However, getting enough calories in is a continual battle.  That makes eating quite stressful…for us anyway.  Jacob, on the other hand, takes it all in stride.  As he does with everything!

Jacob’s diet was designed by the team at The Institutes for Achievement of Human Potential to give him optimal nutrition.  Each meal has a balance of lean protein, complex carbohydrate, leafy green vegetable, green vegetable, another vegetable and a cold pressed oil.  We purchase as much of Jacob’s food as possible from local, organic farmers.  The ingredients we use are rotated with the goal of not repeating an ingredient within a 4 day period.  This is to help identify if he has any allergies.  Thankfully, to date, he does not.

035While this this meal is undoubtedly nutritious, it takes a large volume to get to the calorie goals we have for him.  We have learned a few tricks to help us reach our goal.  First, we made changes from the chicken and turkey breast we are used to cooking for ourselves to chicken and turkey thighs. We also supplement each meal with a variety of oils…olive oil, macadamia nut oil, avocado oil, sesame oil, walnut oil, coconut oil and ghee (clarified butter).  Finally, our favorite discovery, almond meal pudding. 

Thanks to Pinterest, we found a great, super easy recipe for almond (or any other nut) meal pudding.  We simply put 1 cup of finely ground nuts into a skillet and add enough water to get to the consistency we like.  When it begins to bubble, we temper in an egg and Viola!  We later began adding flaxseeds and Chia seeds on an alternating basis for some extra nutrients.  Finally, we top his pudding with some fresh organic fruit and breakfast is served.  Fresh, healthful and calorically dense! IMG_4178[1] IMG_4215[1]

So far, it is going well. We have a goal of 30 ounces of food a day and we are up to averaging about 25. Each day is different, though. Thankfully, Jacob’s amazing smiles make the stress melt away!

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…