Quinten's Story Will Forever Be Part of the NICU at Children's Hospital

About a month ago, I was contacted by a mom who is putting together a Memorial Wall in the NICU of Children's Hospital, in memory of one of her twin daughters. She wanted to include Quinten's story! You can imagine that I was thrilled to share our story, and have him forever a part of the NICU. I explained to her that although we only spent 7 days in the NICU, Quinten's "story" began long before that and really the NICU was just a small part of what we went through. Before I had a chance to tell her Quinten's story, I wanted to ask her about her daughter who sadly passed away. As she retold her story of her identical twin daughter who passed away at 26 weeks - I got goose-bumps. She spoke my language so clearly. At 12 weeks at her first ultrasound, she was not only told that she was having twins (and she was elated), the news immediately followed with concerns with one of the twins. She had a large cystic hygroma that went from her forehead to her tailbone. I couldn't believe my ears. Her family did a lot of praying, hoping to beat the odds of the hygroma. Over the course of the remaining pregnancy her little girl's hygroma continued to grow, and she eventually developed hydrops. At 26 weeks, the twin passed away in utero and because they were identical and shared the same placenta, they had to take the other twin immediately because she kept pumping blood to the other twin but wasn't getting any oxygenated blood returned back to her. Luckily, her other twin daughter survived. Although small (2.6pounds) - the twin with the hygroma weighed 6.6 pounds because of 4 pounds of extra fluid! Her story gripped my soul, and again I feel that she like many other people I've met, were brought to me for a reason. I realized once again just how lucky we were to have Quinten in our lives - its a good reminder every once in a while, to not take things in life for granted. He did beat the odds!!

As part of this NICU memorial process - Quinten got to get a professional photo taken of him that will accompany his story. Below is the photo that was chosen of him:) Love his smile and how he smiles with his whole body, and squinty eyes!!

Quinten’s Story

In June 2011, at 12 weeks gestation, we were told that our little boy had less than a 5% chance of survival. During a routine ultrasound, a large cystic hygroma was detected on his tiny body that started at his forehead and extended to the middle of his back. We opted for an amniocentesis to get more medical information and to determine if he had chromosomal abnormalities that may have caused the hygroma. We were told that he had Down syndrome and that he may not survive to birth. The hygroma did not continue to grow, and by 26 weeks it had completely resolved and he appeared healthy otherwise.

I carried Quinten to full-term, and on November 30, 2011, he was born. The Down syndrome diagnosis really didn’t scare my husband or I, mostly we were just concerned for his heart and other potential health issues that babies with Ds are at higher risk for. We tried to prepare ourselves for a NICU stay, perfectly aware of the potential issues that may arise after he was born. But we hoped for the best. Almost immediately after Quinten was born he began having trouble with his breathing and sustaining his oxygen saturation levels (Pulse Ox). After spending three days in the nursery at OSF St. Joseph’s, he was transported by ambulance to Children’s Hospital. Handing my 3-day old son over to the ambulance medical team was the hardest thing I ever had to do. He was placed in an isolette for transport and provided oxygen for the ride over to Peoria. The ride over to Peoria was the longest 45 minutes of my life, not knowing if he made the trip okay or not. We were relieved to get the phone call that said he made the trip just fine.

He spent 10 days in the hospital (3 days at OSF Bloomington, and 7 days in the NICU) after his birth. Those days in the NICU were such a blessing to him and to us. The extensive Pediatric Specialist consults and care were so welcoming to us. Because of his Ds, he was going to need a lot of medical consultations after birth and we were able to have all of his evaluations done during his stay at the NICU. The doctors, nurses, and therapists all provided such wonderful care for our son and gave us such peace that we were in the EXACT place that we needed to be for our son. We have the deepest gratitude for all of them, and have them to thank for helping us bring our son home healthy and strong.



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Having Fun With My New Camera!

For my birthday this year, my husband bought me a really nice camera that I have always been wanting. He understands my love of photography, and the way I ever-so-carefully chronicle the special moments in my children's live through detailed scrapbooks and make the memories come alive. I love photographing my kids but I was always disappointed in my camera. I see all of these lovely pictures from photographers and artistic styles that totally move me, but I just couldn't get those feelings to come alive in my photos!

So, I took a 2 hour class to learn things about my camera and photographing kids, words that were totally foreign to me like "aperature" (I'm still not sure if I even spelled that right). I learned you should NEVER operate your camera on automatic mode, nor should you EVER use a flash! Who knew? So - I have been practicing using my camera in manual mode, playing around with shutter speed, lighting, and yes...apperature (bluriness in the background - that cool artistic effect). Anyway, poor Quinny got to be my guinnea-pig today for our little photo shoot which incidentally ended with him peeing all over the bed....luckily I ever so strategically placed him on Kevin's side of the bed!! LOL. Well, it was Sunday anyway, which was laundry day.

Hope you enjoy the photo shoot!

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I am pretty sure this was just when he was peeing - see his crinkled up forehead...and the wet shadow underneath his body.





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Long Overdue!

Well, its been awhile since I last posted! Wow...I am way behind on things. So, it may be best if I just update you all in a list format as there have been many changes going on in the Chadwick household:

1. Ethan had his end of season hockey banquet and received his very own patch for his jersey! He was excited.

2. Quinten has been continuing his physical therapy sessions and is doing well. He can now sit upright with support, and we are working on head control. He enjoys his tummy-time each day and can hold his head up well and can even push up on his forearms.

3. Quinten had a swallow study done a few weeks ago, and we found out that he was aspirating during his feedings and taking the formula into the lungs is what most likely caused his bronchiolitis/pneumonia. We are now adding rice to his bottle for thickening purposes and he is getting to be a Chunky Monkey! He eats 30-35 ounces of formula a day, plus 30-35 tablespoons of rice cereal each day. Wow!!!

4. We had Caden's parent-teacher conference and he is doing very well in preschool! His teacher reports that he is very smart...he can write his name, Ethan's and Quinn's now. We are working on his "social skills" since Ms. Mary tells us that he likes to play alone or with just one of the boys in class. I tell ya, our boys are night and day! Ethan is Mr. Social Bee and Caden, we can't get to socialize outside of his comfort zone!

5. Quinten now needs a helmet we think for his head shape. He's had a significant flat side to his head since early on, and although he spends less and less time on his back - his head is not rounding out like we hoped. We were informed tonight from his PT that she's going to put in the orders to have him evaluated and fitted for a helmet. He'll have to wear it for 23 hours in the day and for an unknown amount of time. Could be a few months, could be a year. Oh well. Its what he needs.

6. Kevin got a new job!!!!!! I am very excited to report that he will be coming to Caterpillar and working in Morton in our Logistics facility. Its going to be a change for us, but its a very good opportunity for him. He will be traveling internationally for the first 12 months, but he's going to get to see a ton of amazing countries that some of us can only dream of going to one day. I am a bit jealous to say the least.

7. In all of the chaos, we also managed to redecorate our downstairs living room and kitchen. We have painted (I should say, Kevin has painted). I recovered chairs, hung pictures, carpet is coming this week and a new coffee table ottoman is on order! I love the transformation of the rooms - and very glad to see the yellow and red walls gone.

8. Its hard to believe, but this Thursday Kevin and I will celebrate 9 years of marriage. Where the time has gone, we don't know but it sure has been an exciting 9 years with lots of changes. We both look forward to many more years together watching our boys grow up and define success and happiness in many different ways.

One thing that having Quinn has taught me...I have recalibrated my view of "success and perfection" and life now has a whole new meaning to me!! Its really a wonderful feeling.

Here are some recent photos of the boys! Enjoy and God Bless.

Vist Baby Chadwick's CaringBridge Blog: http://www.caringbridge.org/visit/mandychadwick