Amanda Needs Your Prayers

Amanda

This is Amanda.  Amanda is 27 years old and has been battling breast cancer.  She is a wife and mother of 2 little girls.  She went to the hospital because she was feeling dizzy and found out she has a large brain tumor.  Residing in Michigan, she took the trip with her husband, parents and parents-in-laws to Mayo Clinic and is even as I write, is undergoing brain surgery.  She’s in critical condition and has been in surgery a long time.  Please take a moment and say a prayer for her and her family.  Thank You.  I will try to post an update as I receive them.  Blessings to you and yours.

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This is Amanda and her 2 beautiful girls.

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Why we walk…

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Right now, babies need all the help they can get. Premature birth affects approximately 380,000 in the United States.  Many of you know, my own life has been affected by the birth of our son, Jonathan, at 27 weeks.  He is a survivor and a miracle.  He is our Jonathan; our “Gift from God.”

Unfortunately, there are also many others who don’t survive.  Also, many who survive, are in need of constant care and support as their babies grow and hopefully, thrive.

In a week, we will be joining the March for Babies here in the Chicago suburbs and walking alongside those who cared for our precious son, The AMITA NICU Warriors.

I walk for my own son, but I also walk for those who don’t survive prematurity and/or the birth defects they are born with.  We need more research to help babies survive and thrive.  Already, more babies are surviving and thriving that wouldn’t have 10 years ago.  Jonathan is the perfect example of this, and yet, there is much more to learn.  If you’d like to help, please make a secure donation or walk with us!  Together, we can help March of Dimes, so more babies can get the strongest start possible.

We honor Jonathan with this walk.  Look at this guy and his NICU team!  IMG_2564

We walk in memory of Jesse Amandus, who fought an amazing fight after his birth at 24 weeks, but could only be with us for 13 days.  IMG_6413

We walk in thanks for the care received in the NICU at AMITA Adventist Hinsdale Hospital, and all of the hands that have helped and continue to help us walk through this journey.  IMG_7561
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Please click here if you’d like to make a DONATION.  Thank You for all of your support, love and prayers!

A not so fun First…Hospitalization

Well, after having upper respiratory symptoms for about a week and fevers for 4 days, we thought it might be time for Jonathan’s pediatrician to have a look as well, specially as it had gotten to the point where I had to start giving nebs at home, which I’ve never had to do.

We were only 2 hours away from his pediatrician appointment and things got a little too uncomfortable to stay at home.  Jonathan would hold his breath to cough and his lips started turning blue.  I also went to change a diaper and he became ruddy in complexion and starting flailing in panic because he couldn’t breathe.  Off to the ER we went.

Thankfully, we were taken back fairly quickly.  In triage, we were doing pretty well with all of our numbers.  Unfortunately, it took over an hour for a nurse to come and assess him in our room and when they did as I suspected with his ruddy lips, his oxygen levels were a little lower than the desired level, 87%.  Oops.  Quickly though, Jonathan at that point was placed on oxygen.

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Our next step was for a Chest X-Ray.  I know no one ever likes to give a child radiation, but when trying to determine if you are dealing with pneumonia or not, it’s pretty much the only conclusive way to go.  Thankfully he did not have pneumonia, unfortunately though we were pretty sure we were dealing with a viral illness, he needed oxygen for hypoxia.  This was not something we were going to be able to manage at home at this point.  We don’t have oxygen or the monitoring capability at home.  So, we had our first overnight in the hospital since our discharge from the NICU.

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Much more comfortable in his room and with an efficient, sweet nurse who helped me, we were able to suction Jonathan to help him breathe better and then this happened! img_2965
Oxygen levels of 97% on Room Air (without oxygen)!  The bulb suction I have at home just wasn’t going deep enough or strong enough to clear out these super thick secretions to help him breathe better.  What a relief!  We kept the oxygen tubing on overnight just in case we needed to hook him back up, but for the first time in days, he got some good sleep.  img_2968
His numbers stayed up and he slept with a minimal incline on the bed.

Fast forward to morning, we found out he tested positive for RSV, which was not a surprise.  Thankfully, as he was able to keep his levels normal and did not require oxygen throughout the night, we were all comfortable going home yesterday.img_2976
The next morning.

View from his room.  Lurie Children’s Hospital.


When you start cleaning the cabinets with your Boogie Wipes, it’s definitely time to go!

and…He’s 2!!!

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Yes, you read it right! Jonathan is 2!  I can hardly believe it myself!  It seems like he was just born and we’re on the 2nd Birthday already.  My micropreemie is no longer a little baby…official Toddlerhood is upon us!

Currently, Jonathan’s favorite things are TRAINS and CLEANING!  Vacuums, dust pans, swiffers, mops…you name it, he’s in to it!  His activities include swimming, gymnastics, sing-a-long, and Mom Pop Tot interaction.  He also really enjoys going to church and singing and listening to the organ.  Here are some pictures from his Birthday Party…

Yes, his girlfriends are feeding him cake! Ha Ha Ha.

Jonathan with his Godfather, Uncle Mike

Playing with his friends.

His current stats are:

Height 32.28″
Weight 11.57KG/25lbs, 8oz
Head Circumference 19.65″

We are feeling so blessed and proud to be his parents!

I’m still here!

Hi Friends!

I’m still here, with nary a moment to write most days, but I try to read late at night before I pass out from chasing my growing beautiful boy.

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Jonathan is becoming a little boy.  He is in Swim on Mondays, Gymnastics on Thursdays and a Mom Pop Tot Class (learning through play) on Fridays!  I can barely keep up!  We are still getting some nice weather here in Chicago.

Certainly enough that Jonathan got to work on digging some dirt the other day and had so much fun with cousin Charlie!

Most recently, we had a visit from Lola (grandma in Tagalog-a Philippine dialect), and J really just loves her!  We’re wishing they still lived here in Chicago and they’re wishing we’d hurry up and move to Florida!

Can I get a “Go Cubs Go!” out of it?!?!  YES!!!! We’re going to the World Series!!!!!

Of note, J had to graduate to a Toddler Bed. He’s learned to swing his leg over a bar and spin in Gymnastics and decided to try that out on his crib!  Oh, the joys of toddler-hood!!!  I was hoping to keep the crib until he was 2, but what can I say?  My micropreemie is catching up to his actual age in gross motor skills and has other ideas!

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Good thing once he’s out, he’s OUT!  Blessings to you and yours!  I’ll try to do better at updating!

Why?

My heart is heavy.  I know I’ve been quiet for a while, but with so much happening in the past 2 weeks, I had to write.  So much tragedy this month makes me wonder, why?

June 12, 2016, a man…ONE man shot and killed 49 people at a night club in Miami and injured many, many more.  So much hate.  A man that has a past…  was on an FBI watch list.  How did we fail so many people?  What can we do to share more love and block out the hate?  I don’t have the answers, but I wonder and I know if we somehow we are able to do this, it’s what is needed…more love and less hate in our world.

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June 14, 2016, a little boy is dragged from a Disney lagoon by an alligator and his with his family watching and his father was unable to save his child.  Again, so many are blaming this poor family’s parents.  Really?!?!  They just lost their son!!!  Where is your heart?  Parents share photos of their children in this same spot where the child was taken.  There were no signs warning of the wildlife, just “no swimming”(this has since been rectified), which this child was not doing.  Now, many of us familiar with Florida know that where there is fresh water, there is a risk of encountering reptiles and alligators.  I would think these folks were not, or we confident that Disney would take measures to ensure the safety of their guests (not knowing, this can be impossible).  These people were on a vacation, enjoying family time.  Happy time.  Now, they’re living a nightmare and I’m sure, hoping to wake up to find something different.  Please, less judgement, less hate and more love.

June 19th, a 17 month old drowned in a nearby town on Sunday, Father’s Day.  His mother found him and was the one who started CPR.  This was the family pool.  Celebrating Father’s Day, attending other children…the 17 month old was lost track of.  Tragic.  Heart breaking.

Also on June 19th, a 4 year old girl at a Swim and Racquet club also drowned in another nearby town Sunday, Father’s Day.

So much tragedy all around us.  So many stones to throw and so much blame to hand out.  BUT, there’s so much suffering already.  Can we not just love?  I don’t know any parent who is perfect.  I know more than not have been right there when our little loves have fallen or gotten hurt…when you lose sight for 2 seconds and suddenly your breath is taken away.  Why do so many people have to suffer, have to hurt?

Then I saw this posted on Facebook the other day and the tears just came. 16. Why does a 16 year old girl have to fight ovarian cancer? But look… in this tragedy, there is hope…there is light…there is love…

Resiliance.

Thank you for hearing me.  Thank you for reading what’s on my heart.  More love.  Less hate.  More tolerance.  Less judgement.  Lets help each other more and ignore each other less.

God’s Peace to you.

 

 

 

Why I March…

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Many of you know that we gave birth to this beautiful baby boy at 27 weeks last February.  This precious boy was 1 pound, 15 ounces at birth.  This picture is the first time I was finally able to see my little boy.  I was too sick to see him for the first 2 days.  He is 3 days old here.  Prematurity is near and dear to our hearts.  After spending 3 months in the NICU, we witnessed so much.  We were certainly blessed to have not only survived such an early birth, but to have thrived.  Many babies are surviving such young gestation because of the work of March of Dimes.  But, there are many that don’t and babies who struggle even more than my beloved boy.

In honor of these babies, I am marching in the March of Dimes walk to help raise money for babies who struggle with prematurity, babies born with birth defects, and to raise funds, awareness and research for early infant mortality.

I walk to honor my son.

I walk in memory of Baby Jesse Amandus.

I walk in Thanks to Adventist Hinsdale Hospital and all of the hands who have played and continue to play a role in our journey.  They not only help us survive, but to thrive.  As always, a special shout out to CHN for all of the continued love and support.

If you or anyone you think may be interested in supporting our cause.  I invite you to visit our page (simply click on the link):

March for Babies

Thank You!!!

 

Too Good not to Share…

If you haven’t seen or read this article, it’s a great read.  This is my opinion.  I struggled when our pediatrician recommended “sleep training” via the Ferber Method.  In the end, I decided to trust my “gut,” mommy instincts and do what I had learned and already had been doing since our NICU stay.  After reading other articles and talking to others about it, I’m glad I did.  Enjoy!

Click on link to read article:
Avoid Stressful Sleep Training and Get The Sleep You Need