Joshua's Journeys #38- And sister makes 5

This quarter's CHARGE Account, the newsletter from the CHARGE Syndrome Foundation, featured articles on planning another pregnancy after having a child with CHARGE. There were many people that wrote of their personal decision on whether or not to try for another baby after having a child with CHARGE, and some scientific data about infertility, prenatal testing (Josh did not have the gene for CHARGE so this would not have helped us) and diagnosis, and more from the genetic counselor Meg Heffner (coauthor of the book on CHARGE). I was among the 8 women who wrote in about our experiences conceiving again and what that meant to our family. I was the only one who has a CHARGE angel that wrote, but each story is personally unique, and I have become friends some of these women and their families. It was fun for me to read and relate to the other moms having a non-CHARGE child after their CHARGE child and the shock of not having to worry about hearing screens, car seat tests, breathing issues, trachs, g-tubes, etc. before even leaving the hospital. To this day, when we are out whether it is at the store, a friend's house, going for a run, going to the zoo, a carnival, the aquarium, you name it I can't help but think where Josh would be sitting, where his equipment would be, if it would disturb others if I were to suction him, how the environment might affect him, the list goes on and on. Of course I could write forever on the what-ifs if Josh were still here, so I will end with that and share our intimate story of conceiving again...

Conceiving Again
By: Sandy Kurby
I had twin boys, one (Joshua) born with CHARGE. He was a fighter. After 8.5 months, he completely blindsided all of us and moved on to Heaven. The doctors, my husband, and I were dumbfounded. He died of reasons outside of CHARGE (they called it an abdominal catastrophe since they really had no explanation). I had tried for years to get pregnant with my boys and finally had done IVF. I was on bedrest at 19 weeks, and delivered Joshua and Joseph at 32 weeks and 6 days.
As most of you can relate, our days had been filled with many therapies, doctors‘ appointments, and, of course, hospitalizations and surgeries. We wondered if financially we could afford to have another child, and if physically and emotionally we‘d be available for a third child. We were back and forth on if we could afford (time and money wise) to have another child. By the time Josh was 6 months old, he was stabilizing at home, we were in our routine, and his brother was doing well too. We felt that we could in fact have another child and were not going to close the door to that possibility. As God wanted, Josh was admitted to the hospital for a month and a half and at 8½ months passed away (March 14, 2009). We were completely devastated. We didn‘t know how we‘d continue without him here.
My husband and I decided shortly before Joshua‘s passing that we would try for another child, eventually. After he passed, I was still pumping/breastfeeding his twin so never got a period, but a few weeks later felt the need to take a pregnancy test (never had maternal instinct before!). I never would have thought it would be positive because of all the complications I had trying to get and stay pregnant previously. Well, early April we found out I was pregnant. While we were not preventing a pregnancy or ruling out another child, we had such a hard time conceiving and staying pregnant in the first place that we were in disbelief. Don‘t get me wrong—we were very happy, but in shock. In telling people that we were pregnant after the first trimester, we heard many different attitudes. Some people were ecstatic for us; others questioned if we were trying to replace Josh, which was and is not the case.
During the pregnancy we wondered: What if this child has CHARGE as well? Many conversations with my husband resulted in the same ending: we would deal with whatever came our way. We loved Josh so much and would embrace having another child like him; we knew we would make things work with whatever was brought our way. There were times during the pregnancy that I wondered if she‘d have CHARGE (and to be honest, after my journey with Josh, there have been and still are times I wish she did have CHARGE!). My OB sent me back to the perinatologist to be closely monitored. We had several growth ultrasounds, a very intense 20-week ultrasound, and as a reassurance we also had an echocardiogram done on the baby by Josh‘s cardiologist (who knew what Josh and his heart were like), but that showed nothing of concern. We were told that although the ultrasound and echo showed nothing, there was still the possibility of CHARGE. My OB encouraged me to have a quad screen test; however, I still decided not to.
All turned out fine. Jillian Grace was born at 39 weeks (c-section) and is very healthy. She had an Apgar score of 10, whereas we never got the Apgar score for Josh. The whole birthing experience was dramatically different. I was able to hold my baby this time, see my baby, go to recovery with her, and feed her. I remember as they were pulling her out, holding my breath just waiting to hear her cry, to know she was breathing on her own. When she was brought to me, the first thing I did was look at her ears. I will say, I was a little disappointed I didn‘t see those floppy ears that I loved to kiss on Josh. And our first question for the pediatrician once we were back in the room was, When will she have her hearing screening?
During her second day of life, Jillian choked on some fluid and turned a little blue. We had to hit the call button, and I had to run down the hall for help. They did the Heimlich Maneuver on her and then suctioned her mouth out. It was a good scare, but we had been through much worse with Josh. It was, however, a reminder of how precious and fragile life is. We are very glad that we did decide to have another child. We miss Josh dearly and he is still a part of our daily conversations, and always in our heads and hearts, and we are glad that he is Jillian‘s guardian angel and has sent her to us. Jillian and Joey are blessed to have an angel always looking out for them.
Jillian is now 4 months old and is very happy and healthy (outside of a cold here and there). She is gaining weight so fast it is amazing—she is going to catch her 21-month-old surviving brother soon in the weight department! I am so glad we did have her—we are truly blessed. Joshua taught us so much about love and life: that material things are not important; it‘s the smiles, the little accomplishments that some may take for granted that mean so much; and that life is precious. I have learned so much from Joshua and am so glad he introduced me to this wonderful community. I stay involved by reading (and replying when I have something to share) the CHARGE listserv, keeping a CHARGE Accounts fundraising page, reading and keeping up with many CHARGE kiddos‘ blogs (I‘m really addicted!), and hosting a yearly 5K walk/run in memory of Joshua with all funds raised going to the CHARGE Syndrome Foundation.

To read the full newsletter (and see a few pictures) click here. Our story is on page 14, but there are many other great accounts and a lot of information throughout the whole newsletter.
I particularly like Corrie's quote "If you're a person of faith, you know there's nothing like the CHARGE experience to get you praying." Corrie is a mom of 2 CHARGE children--I hope I am able to meet her and her family at next year's conference!

The newsletter also announced the Joshua Kurby Charge for CHARGE 5K on August 14...don't forget to register!

Weighing In

Today we had Joey's 2 year and Jillian's 6 month appointments. Ok, so Jillian isn't 6 months until next week, and Joey has a week and a half, but we went today. The last time we were there it was just for Jillian and Joey was very clingy and had a very hard time even though he was not looked at. This time both Jill and Joey did great. Jillian was her smiley self, even laughing at the nurse listening to her heart. Joey enjoyed stepping on the ducks on the scale for his weight. The doctor was very impressed with Jillian's sitting abilities and of course her eating abilities too! He told us since she is sitting so well we can start introducing finger foods already as well as a cup! We actually tried a cup last night and have been giving her Biter Biscuits now and then, but now we can really get into it! The doctor was also impressed with Joey's potty training progress. The doctor started off giving us some sheets on potty training and talked about how to know if a child is ready to start potty training, when Phil interrupted him and told him that Joey goes peeps in the potty pretty regularly. We are just working on number 2, and the doctor was very happy to hear that. Good job Joey!

Ok, so what you've all been waiting for...their stats! Jillian is a big girl, but consistently following her growth curve:
Weight: 17 pounds, 14 ounces putting her at the 88%ile (same %ile as her 4 month check)
Height: 26 1/2 inches putting her at the 76%ile

Joey's growth curve is more of a straight line. He has skyrocketed for his growth even though he is still a little guy. Remember he started off no where near the growth chart at all, so he is doing great catching up.
Weight: 24 pounds in the 9%ile (last time he was in the 6%ile)
Height: 32 3/4 inches 18%ile

A lot of updating...

I have fallen behind once again, so here is a lump of pictures and happenings.

Phil turned 30...finally, and we had a small get together at Dave and Buster's to celebrate. Phil was in his element (with all the kids) playing video games and having fun!


We have had a lot of outside fun between the raindrops. We've been back to Cosley Zoo in Wheaton, a small but perfect zoo for Joey and Jillian. We've also made it to the "big" pool to go swimming. Joey likes the zero depth pool and the sand play area. There is a small water slide that Joey and Andrew have mastered as well. We have been going to the pool in Bartlett, since I work at the park district over there as well and got a discount! Joey and Jillian are going to the daycare for a couple of hours on Wednesdays and Thursdays while Mommy works, and then we usually try to head to the pool afterwards as a treat. Joey started off crying each time I'd leave him to go work, but today he didn't even turn his head as I walked away and when I came back to get him he was going down the slide and ran over to me to grab my hand and go play!


Finally, this past weekend we went to the Shedd Aquarium for Father's Day. Joey and Jillian had a great time. We started off with the Fantasea show and wjere we saw penquins, beluga whales, red tailed eagle, sea lions, and more. Joey enjoyed the show, and Jillian was mesmerized by the changing lights. Walking around to the different exhibits Joey was very interested in everything and would say no whenever we tried to make him leave to go to the next area. Once he saw there was more to see he was ok, but did not want to leave. After the Shedd, we took a little walk to Navy Pier for an outside lunch before heading home in some pretty crazy traffic. Overall, they both did excellent and we all had a great time.

Joshua's Journeys #37--He's Gonna Be Famous!

I woke up this morning and was checking e-mail and was so ecstatic to find out that Josh will be in a book about CHARGE Syndrome due out in September or October. I submitted a bunch of pictures to Meg Heffner, a genetic counselor and associate professor at St. Louis University, as well as special advisor for the CHARGE Syndrome Foundation. She and a few other great professionals in the CHARGE Syndrome world have worked very hard to put together a book on CHARGE Syndrome. We have already pre-ordered our book, and can NOT wait to get our copy...especially now! Click here for the link to pre-order or see more about the book. We were told that the book will actually be closer to 400 pages (the site says 250), and we're not sure which pictures of Josh will be in there yet. I submitted a whole lot of pictures of Josh doing many, many different things. Meg had asked for specific topics that she wanted to illustrate in the book and I think we had at least one picture for each request she had (except for walking, or adult CHARGE activities). I also noticed that there are a bunch of other CHARGE kids and adults (Yeah Ellen, Mighty Max, and Ben!) that we have become close with and can't wait to search for their photos too!

No picture to post here, we'll see a bunch in the book later on!
And sorry I haven't updated pics in a while. We've been busy...we've had Phil's birthday party, lots of outside fun, and today for Father's Day we're going to the Shedd Aquarium, so one of these nights I will post some pictures and catch up! Happy Father's Day!

Watching the kids play

Siblings at play from Phillip Kurby on Vimeo.

This was so fun to watch

Catching Up

Well, Jillian is now 5 months and doing great! She is now an independent sitter, when place on her tummy she will swim in place like she wants to crawl but can't pick her trunk up to do so. Joey did the same sort of thing, and never was big on rocking or scooting, but just one day started crawling. Jillian really likes standing and can hold onto something and stay up on her own for a little while. She still loves eating veggies, fruits, cereals, you name it! We haven't found anything she didn't like yet!

Joey has had a rough week of teething. He has gotten all of his teeth out of order. So he is finishing his mouthful with his incisors or the fangs and boy are they hard on him! He did take some time this weekend to play some ball and help Mommy dig do some landscaping and set our garden up. He has been totally out of sorts for most of the week, but we are hoping he is feeling better by the weekend.