Right now, babies need all the help they can get. Premature birth affects approximately 380,000 babies 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 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!
We walk in memory of Jesse Amandus, who fought an amazing fight at 24 weeks, but could only be with us for 13 days.
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.
Please click here if you’d like to make a DONATION. Thank You for all of your support, love and prayers!
After trying to manage bad cold symptoms for 6 days and fevers for 4, we finally would up in the ER at Lurie Childrens. It got to the point where I was giving nebs at home (which I’ve never had to do) and Jonathan started having signs of cyanosis when he had to hold his breath to cough. He also became very orthopneic and became ruddy in complexion when I changed his diaper and started flailing in panic. He needed to be upright all the time, so off to the ER we went.
were pretty good in triage, so we were taken back to a room. Unfortunately we were there for over an hour before a nurse checked on us and realized his oxygen levels
were only 87%. Needless to say, he was then placed on oxygen, followed by a chest x-ray to rule out pneumonia
. Thankfully, he didn’t have pneumonia, but we had to be admitted because of his oxygen requirements.
After getting to his room, his very sweet, efficient nurse set up suction for us and helped me do some good suctioning and then this happened….
Oxygen levels of 97% on Room Air (no oxygen)!!! Too bad I didn’t have this kind of suction at home! The bulb suctioning just wasn’t cutting it. This was great though, and he could finally get some good rest.
Thankfully, though we were prepared to intervene if necessary, he maintained good oxygen levels throughout the night while asleep on room air. His regular pediatrician came in the morning to see him and let us know he had RSV. Not a big surprise considering the progression of his illness. We just weren’t sure if he was going to get better or even worse, so it was good we went in and he could get some relief. Sleeping early in the morning with perfect numbers. Since he proved throughout the night that his was maintaining good oxygen levels without assistance, we all felt comfortable going home to get a much better rest.
After a good night’s sleep, waking that morning. A whole new little boy! This was the view from his room.
You know it’s time to go when the kid starts cleaning the cabinets with Boogie Wipes
Jonathan is officially 2 years old and just had his official 24 month check up today! Here are his stats:
Height 32.28″ (9%)
Weight 11.57KG/25lbs, 8oz (19%)
Head Circumference 19.65″ (81%)
He’s following his curve perfectly, and catching up! Developmentally he is testing at his age or above, so he not in any therapies and is an official graduate of the NEST developmental clinic!
At the doctor’s waiting room in Streeterville Pediatrics.
Graduation and final NEST Clinic appointment! His amazing NICU team!
Jonathan had a Choo Choo train Birthday Party on Saturday and had a great time celebrating with friends and family! He now has more toys than we know what to do with, so we are trying to open them in stages.
Here, let me help you with that!
With his Godfather, Uncle Mike.
He absolutely loves to clean!
On his actual birthday, we had a nice breakfast at YOLK and Jonathan enjoyed his own yummy plate!
Jonathan currently has quite a busy schedule.
Monday – Swimming
Tuesday – Gymnastics
Wednesday – Music
Thursday – FREE day
Friday – Mom Pop Tot (includes play, craft, music and tumbling)
Thank you for following his progress and sending us so much love!
Wow! October sure was a busy month, and November is looking to be just as crazy! Get ready for a picture FEST!
Of note, Jonathan has officially graduated from Physical Therapy. He is scoring at his actual age or above on his motor skills, so he has been discharged! This is BIG news here! We are of course going to continue to promote his development every chance we get, so he is still swimming, going to gymnastics and his Mom Pop Tot class!
Jonathan is now 21 months old. He is walking, running, climbing and has graduated to a “big boy” bed. He enjoys the outdoors and exploring. He loves animals, particularly dogs and cats. He also takes after his father in liking anything electronic, specially if it has buttons! We are all well and enjoying every moment with our beautiful boy. We are blessed.
The Pumpkin Patch at Lincoln Park Zoo
Partying with the Birthday Girl and Guy! Talysin turned 16 and Julian 21!!!
Absolutely loving his visit from Lola (Grandma)!
Pirates for the Mom Pop Tot Halloween party and Jesse White Community Center party! Yes, 2 parties in 1 day!
Spider-Man for his buddy Theodore’s Super hero Birthday Party!!!
Happy Birthday Ella!!!
Music with Mr Dave on Halloween
Trick or Treating on Southport!
…and on that note, I hope this finds you well and brings you a smile!
So much has happened since our last post! Jonathan continues to be in swim class on Mondays and is often the star pupil. He takes lessons at Goldfish Swim School and has advanced to Mini 2!
Jonathan has been in Physical Therapy for the past few months to get him through this walking stage. We have a great Physical Therapist named Debbie that has been doing pediatric therapy for a while. Though Jonathan loves her, he lets us know how hard she is making him work. He does a little bit of toe walking and we are just trying to make sure this is just a coordination and strength issue and wont be a continued problem for him. He’s doing great! Toe walking is less and less as he continues to get stronger.
Another new activity to help Jonathan in his strength and encourage strengthening activities is Gymnastics! The Chicago Park District offers Gymnastics at many locations and one of them is only 3 blocks away! Jonathan loved it at first site!
I know you’ll be surprised to hear that he enjoys anything musical…
Most recently he figured out how to make noise through his recorder! He still pounds on the piano every chance he gets!
We’ve been taking many trips up the “The Farm” in Michigan with Jonathan’s Godmother, Lexie and most recently took at trip to Northern Wisconsin to spend some time with Jonathan’s Godfather, Mike. Here are some pictures of his summer fun! Many Blessings to all of you! Thank You for your thoughts, prayers and love. It is returned tenfold…
Well actually, Jonathan is 15 months old, but he is 12 months corrected/adjusted for prematurity now! Woot! Woot!
We just had his check up and he is 30″ long and 20lbs 6oz!!! That is the 15th Percentile **not adjusted for prematurity**!!!! He is on the grid for his actual age! It is great news, and it means he is catching up nicely!
At Jonathan’s last NEST clinic (developmental clinic) appointment they were concerned about his gross motor skills being behind. So we got another visit from Early Intervention, and they did an in-home assessment. Of course, he’s just started to crawl, but he is compensating for some muscle strength he doesn’t have yet. He is doing fine with development of care, speech and occupational therapy. He is going to start some physical therapy do make sure he doesn’t get any further behind with his gross motor skills. A therapist will come to the house to play with him once a week. This is great news as he will get help in his own environment and I will be able to learn more how to help him from the Physical Therapist.
This is on Mother’s Day.
Most recently, we also walked in the March for Babies event. Here are some pictures of the event. Thank You so much to all the people that supported us on our walk! It meant so much to us and many others!
This past weekend was one of many celebrations! Jonathan turned 1 corrected age, we had our 5th Wedding Anniversary and Mother’s Day all in one weekend! We are blessed!!! Thank you so much for continuing to follow our story and Jonathan’s progress!
The difference a year makes.
If you’re following this page, you know how near and dear to my heart prematurity is and how blessed I feel to have a baby who has survived and thrived despite an early birth at 27 weeks. Though technology and medical practices have come a long way, there are still many that don’t survive and others who live with many debilitating health issues. We are walking in the March for Babies event at the end of the month with the hope of creating awareness to the cause and raise money for research.
We walk to honor Jonathan.
We walk in memory of Jesse Amandus
We walk in thanks for the hands that have helped us along our journey. That is all of you, the NICU at Adventist Hinsdale Hospital, and our church family at CHN.
If you’d like to walk or make a donation for our walk, just click on the link below to our page:
March for Babies – Chris’s Page