If This is Our Future . . .

In June, a wonderful mom, Hannah (Riley’s mom), from the WHS community emailed me to let me know her family would be in Chicago in August. Hannah was hoping we could meet and get the kids together. Yikes! The prospect of meeting another family in the community was exciting and scary rolled into one -- especially back in June. JD was still in the hospital and we were still new to this whole world. Would I be prepared to actually become part of the WHS community? At that time I was more of an outsider looking in which was working out perfectly for me. I could peak in the open window to listen to the conversations without having to join the community.

Who was I to join in the conversation anyway? We were only a few months in with JD who was still a small baby. JD was trying to figure himself out as we were adjusting to our new normal of going to the hospital everyday. Here we were being pampered by some of the best nurses and doctors in one of the top 10 children’s hospitals in the country and I was suppose to jump in to a community of people who have been living it everyday for months, years – and even some – decades.

Yes, I wanted to meet Hannah’s family but I needed JD there with me for support. And at that point in June JD had recently gone back to the hospital so the timeline for his departure was unclear. Therefore, the prospect of opening the door and stepping into the community alone was close to becoming a reality.  

However, this was not the first time someone had reached out. From the moment we posted JD’s story on WolfHirschhorn.org we have had remarkable parents reach out to us with open arms. It started with Kevin (Kendall’s dad) who is the administrator of the wolfhirschhorn.org site. I had reached out to him back in February shortly after we find out about JD. It turns out he not only runs the site but he – along with his family – live in the Chicagoland area. What are the chances?!

Within the first few months he invited us to a WHS get together with some families who were in town. Immediately, we were welcomed into the community without hesitation. While Nate and I not ready to meet the families it opened the shades slightly to this brilliant community.

Next came Hilary (Magnolia’s mom) who started to read our blog leaving inspiring comments with each post. We had already been following Magnolia as we found her blog during our initial research. Nate and I race to be the first to read each update. By this time Hilary seemed like an old friend. When having conversations about JD I would refer to Magnolia and Kendall as though we just completed a playdate. Their milestones became my talking points.

Finally, came Autumn (Tyler’s mom) who was the first to "Friend" us on Facebook.

(Side note: how do I say Friend? Do I say “Friend” or Friend or “Friend”? What is grammatically correct when discussing Facebook “Friending”?)

Being Friended on Facebook is a big step because it allows you to be invited into someone’s life. No longer were we only seeing the carefully written blog posts but instead we were now allowed a glimpse into the whole life of a person. It became more than doctors’ updates and developmental milestones. Now we were privileged to see something truly special . . . . the everyday. And Nate and I cherished it.

Autumn also invited us to join a private Facebook group with other WHS moms and dads. A place where questions are asked, stories are shared, and hearts grow bigger. Everyone in the group understands the joys and challenges faced everyday. The fear of the unknown and the excitement of the unpredictable.

Within 20 minutes of sharing our story within the group I had 15 new Friend requests. Some from England and Ireland – whoa. With each new Friend request, with each new story and with each new picture I slowly took steps towards opening the door to the community. I watched from behind my window as strangers became friends and as other families looked for strength in someone across the country – or even across the pond.

Then came the National Convention in July. Of all the places in the country it could be held it was taking place in Indianapolis – just 3.5 hours outside of Chicago. Nate and I had debated about going but as the weekend approached my desire to attend became greater. I had no interest in the doctors or experts that were speaking because we have a wealth of knowledge at our finger tips at Lurie’s. No, they did not interest me but the reason I wanted to go is I finally felt ready to join the community. I was willing to take that full step into the community that unknowingly had helped us through the last 7 months. I wanted to hug and thank each of the parents whose blogs we had been following or the parents posting WHS.org updates or asking the same questions we had within the Facebook page.

However, JD was still in the hospital and while 3.5 hours is reasonable it was not close enough for us to leave our little man for the day. Alas, I continued to watch from the window as the community grew stronger and friendships grew tighter.

Here I go again, long winded. How does that mom you talked about in the beginning of the post fit into this ridiculously long story? Well, Hannah is the mom who finally took my hand and escorted me through the community door on August 17th.

Leading up to her family’s arrival Hannah reached out to a few Chicagoland families to meet up while they were in town. I casually asked why they had chosen to be in Chicago this weekend. “We will be in town for the Air & Water Show. My husband is a Blue Angel.” WHAT?!?! Seriously. Of the hundreds of people who apply each year only 3 are chosen and I now know one of them. Amazing!!! I feel like in this jaded society not many jobs impress people but a Blue Angel is something even the hippest of hipsters finds super cool and impressive. I don’t know what it is but jets flying at supersonic speeds 18 inches from the next plane through the city gives me butterflies every year. And I now I know one of them . . . already JD is giving us opportunities we would not normally have in our lives.

It was all set. On a cloudless Friday morning at the Lincoln Park Zoo we officially became members of the Wolf-Hirschhorn community. Hannah with her kids, Kevin with his kids, and me with my boys all gathered for JD’s introduction to the community. There were no nerves just an eagerness to see JD’s future.

The morning was great with the loud zooms of the Air & Water Show practice at North Avenue Beach. The animals were enjoying the cool high 70 degree weather. While the kids  . . . were just being kids. It is hard to describe what I saw that morning but I felt like JD’s future was laid right in front of me.

  

Riley is a 3½ year old shy little girl with big beautiful blue eyes that sparkle in the sun. She walks around carefully while looking at the animals clapping her hands which becomes contagious. As I watch her, I too want to clap my hands at the wonder that is nature. Riley is thoughtful as she sits in her stroller with one figure lightly placed on her lips while she takes in her surrounds. I imagined a thought bubble above her head that says “hmmmm” similar to what Connor says when he is debating something. Riley does not speak but her actions tell her story.

Then there is Kendall, the chatty 5½ year old who loves babies. She was immediately drawn to JD, the “baby.” Active does not tell Kendall’s full story. She is a girl who springs to life when you ask her a question. Similar to other little girls she wants to help by pushing the stroller and checking on the baby. Kendall walked with me for 20 minutes pushing the stroller only stopping to check on JD. Connor was so impressed he followed Kendall around as she went from the stroller to the animals and back again. Kendall runs and laughs and has a smile that lights up even the dark reptile house.

The boys and I were only able to spend a few hours with the crew as JD had another appointment but those few hours were all I needed to envision our future. 

Our future includes . . .

Big stunning blue eyes that laugh with the continuous smiles he gives throughout the day.

Our future includes  . . .

Chasing after two boys who toggle between being active and thoughtful at a moment’s notice.

Our future includes . . .

A little helper who has a concern for others and wants nothing more than to show off his skills.

Our future includes . . .

A smart, loving, active, but most of all happy little boy who will bring joy to everyone he encounters.

If this is our future . . . it seems we have been blessed with the perfect life. 

Happy Four Months

I am a little late on my Happy Four Months to JD but thought I would post a few pictures while I finish the next update. James keeps me busy with appointments while Connor keeps me busy laughing all day long. 

Mom, please buy me a larger onesie - this is just embarrassing

Storing extra food in my cheeks for the end of the world later this year

We are getting so good at moving our hands we have started to learn how to Dougie

Unlike McKayla Maroney we are very impressed with Team USA's performance - Yay!!!

First time eating corn on the cob

Preparing for the Tour de France - no doping needed here

More JD updates coming later this week. We have had appointments every single day so as you can imagine I spend most of my time sitting around getting manis/pedis while drinking a crisp summer wine. Cheers!

Home Sweet Home

It has been over a week since we left the hospital. Over a week since we have been a family of four. And over a week of strong growth, lots of snuggles, and happiness.

It has been awhile since I have posted and I am sorry. But when you have the chance to snuggle with this  . . . who wants to hang out on the computer.

First official smile

Connor has taken to being a big brother the way he does everything else . . .with hilarious excitement. One morning when JD was getting fussy before his feed he let out a few little cries I asked Connor to sing to JD to help him feel better. A shy smile came across his face as he softly started signing Twinkle Twinkle Little Star. Melt my heart. Growing louder and more confident he could not stop. We sang Twinkle Twinkle Little Star for 10 minutes (which is a very, very, VERY long time for a song with 6 lines – 2 of them the exact same). Now, as the protective brother that he is, if he hears JD make a peep he runs across the room to sing Twinkle Twinkle. Sometimes with a little intensity as if to say “seriously little brother stop your noise making.”

First bath at home is so cozy

Rainy Day Avenger - Protecting little brothers everywhere

  

Just two days after departing the hospital we were right back at the hospital but this time only for an appointment. It was strange walking into the hospital with JD and having to check-in at the front desk. No more VIP, flashing the bracelet, jumping in front of people in line. Only in-patients are allowed above the 11^th floor . . . we plan to never see those floors again.

The Appointments

Ophthalmology - Eyes

“My favorite” – said no mother ever. They checked his pressure (once again, I hate this) . . .but things are getting better. The pressure is within normal range and the nerves in the back of his eye they were concerned about during the last exam look good this time around. Plus, the actual ophthalmologist (not the resident) is great and pulled a little smile out of JD.

Pediatrician – General Contractor

While Dr. D spent some time with his fam in Italy (of course his two week vacation started days before we left the hospital) JD met Dr. M. Once a little peanut leaves the NICU they need to see the pediatrician within a few days. Just two days out of the hospital and JD had already gained weight. As of 7/26 at 3.5 months, James Douglas weighed in at 9lbs 1.6oz reaching 21.5” On a typical chart JD does not register but on the WHS chart he is right on the 50^th percentile for both height and weight. Our Gawel boys know how to grow.

Cardiology - Heart

Nothing new is what the doctor said which is exactly what we wanted to hear. Yes, JD has a large ASD. Yes, it is and can cause additional pressure on the right side of the heart. Yes, JD is doing very well and nothing has changed with his heart. We will continue to monitor every few months but for now as he grows we hope the ASD grows smaller.

And . . .after only a few more days JD has packed on the ounces to bulk up to 9lbs 4oz and 22.5”

Orthopedics – Club Foot

Last week I told a friend I just want to hear the doctors say “oh this? No worries this is mild.” Instead we continue to hear “well it’s not severe but it’s definitely not mild.” After thinking about it she said “Jen, what about JD’s foot? JD’s foot is mild.” What a fabulous friend! She was correct. 

Finally, FINALLY during our appointment we heard “JD’s foot? Oh, this is very mild. Casting usually takes 6 weeks there is a good chance his will only take 4 – 5 weeks.” 

First cast

First Gawel to have a cast . .. not the last with an overly active brother like Connor

The heavy cast will help JD build core muscles - maybe I need a cast on my leg

Poor little peanut - a cast on one foot and a monitor on the other

Each week we head back to the doctor for a new cast until the doc tells us we can stop the casting. From there he will wear special shoes for a few months all day finishing up only when he sleeps. It might sound intense but I don’t hear how long it will take. All I hear is “Oh, this is very mild.”

Outside appointments we have enjoyed every NBC daytime and primetime minute of the Olympics. I look forward to Connor’s gold medal interview with Bob Costas as he talks about his little brother.

This upcoming week brings more appointments, more Olympics, and more snuggles. Not sure if I am more excited to see the events this week or to see where Kate and Wills pop up.

Go Team USA!

The Gawel cheering section

USA . . . USA