Sofia's CDH Story

Thank You!

noreply@blogger.com (Jen) — Fri, 01 Apr 2011 04:52:00 +0000

Our 4th annual CDH Awareness Day blood drive was a success! We registered 29 donors and collected 30 units of blood! Thank you to all our donors who came out to donate in honor of Sofie, Kinley, and all babies with CDH. We are so grateful to you! Thanks again to Rees Masilionis Turley Architecture for making this blood drive possible each year by graciously allowing us to use the first floor of 908. We certainly couldn't do it without you!
Sofie and Kinley had a blast playing together, and they both had baby brothers there this year supporting them, too. Each year when I see the girls running around, giggling, and playing, I'm reminded of how blessed we all are and how far we've come in the last three years.
It was great to see lots of familiar faces and some new ones, too. We appreciate you all giving your time to make a blood donation for those who so desperately need it!
Thank you to everyone for wearing your turquoise today and supporting CDH Awareness. As awareness spreads, more funds are becoming available for CDH research and treatment!

CDH Awareness Day 2011

noreply@blogger.com (Jen) — Thu, 31 Mar 2011 03:20:00 +0000

I just wanted to remind everyone to wear your turquoise tomorrow in honor of Sofie and all the other brave little CDH warriors out there!! We'll all be wearing ours proudly.
Also, our 4th annual CDH Awareness Day blood drive is tomorrow as well. We're looking forward to seeing everyone who comes in to donate and hopefully meeting our goal of 30 units of blood! If you can't make it to our drive, please donate locally.
Send me a picture of yourself donating blood and/or wearing turquoise, and I'll post it here!!

4th Annual CDH Awareness Day Blood Drive

noreply@blogger.com (Jen) — Fri, 18 Feb 2011 18:16:00 +0000

Wow, I can't believe it's been four years already! Our 4th Annual CDH Awareness Day Blood Drive will be held on Thursday, March 31st from 9:00 am - 1:00 pm at the same location we have been at the past two years:

Rees Masilionis Turley Architecture

908 Broadway

Kansas City, MO 64106

1st Floor Lobby

Google Map It!

WHERE TO PARK

A huge thanks to RMT for hosting our drive again this year. Without you guys, we couldn't make this happen!

Last year we had 29 donors and collected 33 units of blood. That's enough to potentially help 99 people! Two years ago, our goal was 30 donors, and we had 41 people come to donate!! You guys are awesome!

We couldn't have done it without the help of Team Kinley, and we're excited that they'll be joining us again this year. Both Kinley and Sofie are big sisters now, and their little brothers will be supporting them.

CDH babies like Sofie and Kinley often need lots of blood transfusions, and their lives depend on donors like you. Sofie received approximately 40-50 transfusions of blood and blood products like platelets while she was on ECMO. She wouldn't be here if it weren't for generous people who volunteered to donate blood.

I know many of you have donated several times in honor of Sofie, and that means a lot to us. Thank you! If you've never donated, please consider it. The first time I donated blood was at our drive two years ago, and it was so easy! Each donation yields about one pint of blood, which can help up to three people in need of blood or blood products. Be somebody's hero!

You can sign up for our drive online. It's quick and easy...

Log on to www.savealifenow.org If you haven't registered already, you will need to register before you can sign up.
Select "Schedule an Appointment" on the right side of the screen.
Find the drive by entering sponsor code "sofia".
Click on our drive, which is listed as "Rees Masilionis Turley Architecture 1st Floor Lobby"
Click the "schedule" link to the right of the time slot you want to sign up for. You will receive a confirmation once your appointment is scheduled.

If you aren't able or don't wish to sign up online, I can sign you up. Just email me at jen@sofiascdhstory.com with the following information:

Your first and last name
Your zip code
Your email address or phone number
The time slot you prefer (1st and 2nd choices)

Here is a LINK to the sign-up schedule, so you can see which time slots are still available. If the time slot you want is already full, please email me. We can make it work!

A link to this post will remain at the top of the left column until after the blood drive for easy reference. Hope to see you on March 31st!!

Big Sister Sofie!

noreply@blogger.com (Jen) — Mon, 13 Sep 2010 22:03:00 +0000

I recently posted a special announcement over on our family blog, OurHawksNest. We're so happy to announce we're expecting a healthy baby in January of 2011!! Click on the link above to read the full post.

Hearing Screen

noreply@blogger.com (Jen) — Wed, 11 Aug 2010 22:38:00 +0000

Back in June Sofie had a hearing screen. We really should have done them every six months after she was discharged from the NICU, but those times always seemed to fall around a reherniation surgery, cold/flu season, or both, so we put it off far longer than we should have. Her last hearing screen was before she was discharged from the NICU at around 2 1/2 months of age. I know, we are bad!

Part of the reason for that was that we really haven't had any concerns with her hearing all this time, and we didn't want to risk taking her into the hospital during cold/flu season just to have a hearing screen, or the priority of surgery and recovery always knocked out routine hearing screening.

Nevertheless, frequent hearing screening is very important for CDH kids, especially those that have been on ECMO and/or been exposed to ototoxic medications, and long-term mechanical ventilation. Sofie, of course, has all of those major risk factors for hearing loss, and the incidence of progressive, late-onset sensorineural hearing loss in these kids is very high. So even though she seems fine now, she is still at high risk to develop hearing loss throughout her childhood, and should be screened at least yearly all throughout her childhood and into her teen years.

One of the early signs of hearing loss is slow speech development during the infant/toddler years, and Sofie has always been right on track or even ahead in the speech department. We know she can hear us quite well, but that doesn't mean that she couldn't still have some high frequency hearing loss that we just aren't able to notice. For instance, she may not hear the "s" on a plural word or other very high frequency sounds, and we wouldn't be able to tell. Therefore routine screening is really important for her.

We expected her to pass without any problems, but we know the statistics and were still worried that we'd put this off and she might have a problem we didn't know about. Better late than never, I took her in for a hearing screen at Children's Mercy in June. I was worried about how well she'd cooperate, but she did surprisingly well, and the staff were fantastic with her. She passed with flying colors!!

For her screening this time, she was tested in a soundproof booth with speakers on each side that played sounds of varying frequencies. She had to look toward each speaker when a sound was made, so they knew she heard it, and she did that without any problem. She wouldn't keep the headphones on this time, so we'll work on that for her next screening. Until she wears the headphones, they won't be able to test each ear individually, so her result this time was for her overall hearing with both ears together.

We're happy she passed, so that's one less thing to worry about right now. We'll keep you posted on future screenings!

6 Month Surgery Clinic Follow-Up

noreply@blogger.com (Jen) — Tue, 15 Jun 2010 18:32:00 +0000

Sofie had her surgery clinic follow-up this morning with Dr. S.P. It had been 6 months since her last follow-up, and we're just over 1 year out from her last (3rd) reherniation repair, which was a latissimus dorsi flap repair.

We started off as usual with a chest xray, which she is never a fan of. But she gets through it pretty quickly, and then we're moving on down the hall from outpatient radiology to the surgery clinic. Dr. S.P. was so surprised at how much she's grown, and said she looks great. Her xray was unchanged from her last one, and everything has been going well, so we don't have to go back for another xray and follow-up for 1 year. Yay!

Dr. S.P. also looked at her pectus, which is getting progressively worse and will continue to do so. He said hers is more prominent than most at her age, so it looks like she is definitely heading for a pectus repair when she's around 12 years old. We have discussed that at previous appointments, so no surprise there.

It was a pretty quick trip to Children's Mercy. We hardly waited any time at all in radiology or the surgery clinic, so we grabbed some biscuits and gravy at the cafe in between our two stops, and went by the train to check it out, but it was still out of commission. (We knew you'd be wondering, Theo!)

Poker Tournament to Benefit Children's Mercy

noreply@blogger.com (Jen) — Thu, 20 May 2010 21:06:00 +0000

What a great event to benefit Children's Mercy Hospital! Sofie was in the NICU at Children's for 81 days, and then back for three reherniations and three subsequent repair surgeries. Throughout her journey we've sampled many departments of this world class hospital, and have been extremely pleased with her care. Children's Mercy NICU is also taking fantastic care of two very special little boys right now - Isaac and Elias. (www.totwinfinityandbeyond.blogspot.com) If you live near KC or will be here the weekend of June 5th, please join in the fun to benefit Children's Mercy!! We'll see you there!

Winds of Change

noreply@blogger.com (Jen) — Mon, 05 Apr 2010 11:13:00 +0000

We created Sofie's blog before she was born with two purposes in mind:

1) The most important purpose was to keep family and friends informed of her condition with up to the minute updates, which also saved us from having to make lots of phone calls. It worked really well, and we were able to keep everyone informed and still focus all of our attention on her and spending time at her bedside.

2) And secondly, it offered a way to help educate as many people as possible about CDH by sharing Sofie's story, and to offer hope to other families affected by CDH.

As Sofie got older and we dealt with more issues...three reherniations and a horrible feeding aversion...writing blog posts became very therapeutic for me. It helped me organize my thoughts about what was going on and work through them, particularly with her feeding issues.

We were also surprised and pleased to find that by having our story out there for friends and family to read, many people opened up to us and offered support through emails and comments on our blog, when they may have not been able to say those same things to us directly.

Writing this blog and sharing our lives with you has turned out to be a really great thing, and I'm so glad we did it. It strengthened friendships we already had by involving people, and answered questions they may have been uncomfortable to ask us, either for fear of upsetting us or just simply not knowing what to say. We've also met many people we otherwise would not have come to know, and I'm very thankful for those friendships too.

A couple of times per month I receive emails from families newly diagnosed with CDH, who have stumbled across our blog while researching CDH online. I'm so happy when they tell me that Sofie's story has given them hope. Hope is priceless in situations like these, and I'm glad Sofie's story has given some hope to CDH families out there.

The past several months, we've been extremely grateful to be moving into a more normal way of life with a toddler. I've kept writing this blog, mostly because it's just something I've gotten used to doing, and now I have lots of fun things to write about - you know, playdates instead of surgeries. FYI: playdates are more fun than surgeries, in case you were wondering.

At nearly 600 posts, and around 200 people who still check it daily, this blog has grown far beyond what I thought it would be when I started writing it, and it can be very overwhelming to sift through when you're looking for information about CDH. It's a record of a very significant portion of our lives over the past 2 years, and I plan to leave it as it is.

We're very proud of Sofie and how hard she has fought to survive and thrive. She's now a healthy, happy two year old who can accomplish absolutely anything she wants as she gets older. I don't want her to always be "the sick baby." When people think of Sofie, I'm sure it's hard not to think of CDH. And that's okay. It's a big part of who she is. And who we are for that matter. But I don't want it to define her. Or us.

We will continue to stay involved with CDH Awareness efforts, but we're ready to begin a new chapter in our lives where CDH is not the focus. Following the lead of several other CDH families, I have started a new blog for our family. I kicked around the idea of making it private, and someday I might. But for now it will be public, for the simple fact that I really don't think that many people will want to read about us! ;-)

I will continue to post updates a few times per year to Sofia's CDH Story about what Sofie has been up to and how she's doing. But our main blog will now be our family blog. I think it's important to keep sharing Sofie's progress and health related issues here, because it's helpful to other families and because no one really knows the long term effects of some of the therapies babies like Sofie have required in order to survive, because they are relatively new.

ECMO has only really been around since 1977, so no one really knows what kinds of risks a middle-aged ECMO survivor may have. Now I really doubt that I will be posting Sofie's 40th birthday party pictures on this blog, but I will continue it into her childhood! ;-)

My intent is to bring the focus of this blog back to CDH, education, and awareness, instead of our daily personal lives. But since it's still fun to write about that stuff (and the Nanas and Papas enjoy it) the new family blog is born, and you can follow it here --> http://www.ourhawksnest.blogspot.com/

Mini Reunion

noreply@blogger.com (Jen) — Fri, 02 Apr 2010 21:53:00 +0000

Sofie got to have a mini reunion with Dr. H. the other day. Dr. H. was one of Sofie's primary Dr's while she was in the NICU at Children's Mercy. She spent a lot of time with Sofie, and we really bonded with her. Now Dr. H. works within the same hospital system as I do, and I see her once in a while at work, which is really nice. I'm so glad we've kept in touch, and very happy that Dr. H. finally got to see Sofie when she wasn't a patient!

Here's Dr. H. holding Sofie the day she was discharged home from the NICU.

And here is Dr. H. reading Sofie a story last week.

Sofie is normally very shy around people she doesn't know and will cling to me.

But she must have remembered Dr. H. just a little bit from way back when, because she wasn't scared to sit next to her for story time (even without Mommy next to her).

It was great to get to visit with Dr. H., but as you might have noticed we were still in a hospital room. Sofie and I were visiting my best friend in the hospital. She is 30 weeks pregnant with twins and has been in the hospital on bedrest for the past 5+ weeks. The babies are having some difficulties, and she will be in the hospital until they arrive, which is hopefully at least until May - they are due in June.

Dr. H. was actually making rounds to check on my friend and her babies - small world, huh? It really puts us all at ease that Dr. H. has been and will continue to be involved in their care. She is wonderful!!

You all offered a lot of positive prayers for Sofie during some really rough times for her, and we know how powerful that was for her. Please take the time right now and in the coming weeks to pray for the twins and for my friend and her husband. I haven't mentioned their names to protect their privacy, but I know they are reading this and will really appreciate your support. Thank you!!

Above and Beyond

noreply@blogger.com (Jen) — Fri, 02 Apr 2010 05:12:00 +0000

For the last couple of years our cousin, Lindsy, has gone above and beyond just wearing turquoise on CDH Awareness Day, and I wanted to share some of the amazing things she has done.

Lindsy is about to graduate from the Radiography program at Labette Community College, and she has helped to educate her classmates and even some of her instructors about CDH, most if not all of whom knew nothing of CDH prior. In fact, CDH is not even in their pathology textbooks.

Last year, Lindsy made and distributed this flyer and turquoise ribbons to her classmates and coworkers at her clinical sites, and encouraged them to spread the word about CDH.

This year Lindsy made this CDH board during the fall semester featuring pictures of Sofie and her xrays and CT scans. It is displayed in the Allied Health Building on the first floor.

Then for CDH Awareness Day this year, her class (2nd year students) all wore turquoise, and the 1st year students wore their radiography t-shirts with turquoise ribbons.

They also had a booth on campus featuring CDH and Sofie's story.

They distributed brochures Lindsy made about CDH, ribbon buttons, and candy. Our video about Sofie's story that's at the top of our blog was playing on the laptop there on the table. She also had her clinical department wear turquoise, and she made a cake with turquoise sprinkles. (Lindsy is front right in the grey scrubs in the photo below.)

Lindsy and her classmates and future coworkers may very well be the ones to first identify an abnormality on a routine 20 week OB ultrasound. The fact that her entire class and the entire class after her will graduate knowing about CDH and Sofie's story, because of what Lindsy has done, is no small accomplishment. And it doesn't end there.

She has also educated many clinical sites located throughout various hospitals in Southeast Kansas, Southwest Missouri and Northeast Oklahoma. Her instructors have been so impressed with the materials she has presented, CDH education will remain after Lindsy has graduated. Her school even observes CDH Awareness Day by wearing turquoise each year, and the booth shown above will be an annual event for the Radiography Club.

With around half* of all CDH cases still being undiagnosed until after birth, Lindsy's contribution to CDH Awareness will undoubtedly be life-saving many times over. Lindsy and her classmates will recognize CDH and make prenatal diagnosis happen in cases where it may not have happened before.

For those who end up working in rural areas, making that prenatal diagnosis will definitely have a huge impact on the outcome of that baby's survival. Babies born in rural hospitals with undiagnosed CDH are at a terrible disadvantage. Many CDH babies have immediate needs for high frequency ventilation, inhaled nitric oxide, and ECMO. Those things are not available in small rural hospitals and that can decide a baby's fate.

Even here in Kansas City, with necessary equipment readily available at some hospitals, we would not have chosen to deliver Sofie at a hospital with a Level III NICU if we had not known about her CDH. It was because of her prenatal diagnosis, we were able to prepare and make arrangements for her to be born in a facility that had all the equipment she might need. And as it turned out, she did immediately need high frequency ventilation and inhaled nitric oxide right out of the delivery room. Had she not been diagnosed prenatally, she may not have survived.

I have thought of the radiographer that did our 20 week ultrasound many times since the day of our diagnosis, and how she was the first person to save Sofie's life. Thank you, Lindsy, for saving the lives of babies like Sofie!!!

*Sources
Congenital diaphragmatic hernia: evaluation of prenatal diagnosis in 20 European regions.
Antenatal detection and impact on outcome of congenital diaphragmatic hernia: A 12-year experience in Auvergne (France)

Spreading Awareness...

noreply@blogger.com (Jen) — Fri, 02 Apr 2010 04:21:00 +0000

I want to thank everyone who wore turquoise on March 31st to help spread CDH Awareness. Here are Nana Linda and Papa Steve wearing their turquoise...

Even Abby wore her turquoise.

Thank you all for your support!!

Thank You Blood Donors!

noreply@blogger.com (Jen) — Thu, 01 Apr 2010 04:19:00 +0000

Our 3rd Annual CDH Awareness Day Blood Drive was a success! We had 29 donors and were able to collect 33 units of blood. That's enough to potentially help 99 people! We want to extend a huge thank you to everyone who came out to our blood drive to donate today, and we also want to thank Rees Masilionis Turley Architecture for allowing us to use their space for the drive again this year. We wouldn't be able to do this without you all. Thank you to everyone out there who wore turquoise today in honor of Sofie. We really appreciate it!

It was great to see some familiar faces from Children's Mercy come out to donate blood in honor of CDH Awareness. It's always fun to show Sofie off to those who cared for her as a baby, now that she's a healthy, silly toddler. To all the nurses and docs and everyone else who cares for sick babies - what you do makes a huge difference, and we are thankful for you!!

Here are a few pics from the drive...

Kenny making his donation

Yours truly

Camilla

Andrew

Kate

Erin

Linda

...and of course, HooHoo

Sofie had such a good time playing with Kinley and running around all day. It's just amazing to see the girls running around playing together, just a couple of years after everything they went through in the NICU.

Uh oh, who will walk away with the coveted ball?...

I think the fist pump says it all. haha!

Over it.

The girls were conspiring to go outside...

CDH Awareness Day 2010

noreply@blogger.com (Jen) — Wed, 31 Mar 2010 14:16:00 +0000

Today is CDH Awareness Day! Don't forget to wear your turquoise today in honor of Sofie and all other CDH babies. Thank you to everyone who signed up to donate blood today. We'll see you there!!!

2nd Birthday Pics

noreply@blogger.com (Jen) — Tue, 30 Mar 2010 06:46:00 +0000

Sofie had lots of fun on her birthday. Actually we celebrated most of the week, and we had a blast. Daddy took a day off from work on her birthday, and we did lots of fun things.

She wore her special birthday shirt made my Cindy (get one of your own HERE).

Then she opened gifts. Her gifts all had a music theme. She got some musical instruments, a microphone, DVD and CD to sing and dance along with. She really likes the shaker eggs, and playing duets with Daddy.

After gifts we headed down to the River Market for our first stop, Babycakes, a local cupcakery. Babycakes has become a yearly birthday tradition for Sofie.

I love this shot of Kenny and Sofie walking to Babycakes!

This is such a cute little bakery.

With lots of fun things to look at inside.

Sofie was a lot more interested in looking around this year, a little too interested in the ceramic plates. And she didn't want to give up the "500 Cupcakes" book.

Then came time to choose which cupcake to get. Too hard. We got three different kinds to share.

That one, Daddy!

After we picked out our cupcakes, we moved on to the main birthday event.

Swimming!!!

Sofie gets really excited about swimming.

I am pumped!!!!

Okay, first let's lose the shoes people. This is serious swim time.

Let the splashing begin!

Sofie loves splashing in the fountains.

Shoes back on.

I love the pool!!

Look Mommy!!

I want to stay all day!

Watch me Daddy!!

Can't get enough.

What a fun day!

Eventually the pool fun did have to come to an end.

Much to Sofie's dismay.

Don't worry. The pigtails recovered just fine. Oh, and Sofie did too.

We had Sofie's birthday party on the Saturday after her birthday. Sofie is absolutely nuts for Dora and Boots. So we had a Dora birthday party.

Sofie dressed like Dora, and her beloved monkey, Hoohoo, dressed like Boots.

Oooh! More birthday fun!!

We had Mexican food and a Dora and Boots ice cream cake.

Nanas and Papas, Aunts and Uncles, and Great-Grandpa Bill and Eva joined us to celebrate.

Sofie and her Nanas and Papas

Sofie loved kicking and throwing the balloons, and even getting bonked in the head with balloons too.

Silly Sofie!

Sofie blew out her candle (with just a little bit of help).

And then...ate some birthday cake for the first time!!! Yay!!

Don't forget to sign up to donate!

noreply@blogger.com (Jen) — Wed, 24 Mar 2010 19:34:00 +0000

Just a quick reminder...don't forget to sign up for our blood drive. It's one week from today!

Click HERE to sign up. Details about the drive can be found HERE.

Coming Soon

noreply@blogger.com (Jen) — Sun, 14 Mar 2010 06:25:00 +0000

We had a really fun birthday week with Sofie. Pictures are coming soon, but here's a preview!!

Happy 2nd Birthday, Sofie!!

noreply@blogger.com (Jen) — Wed, 10 Mar 2010 23:06:00 +0000

Letter to Sofie

noreply@blogger.com (Jen) — Wed, 10 Mar 2010 17:43:00 +0000

Dear Sofie,

It's hard to believe you're already two years old. But when I think back to all you've been through over the last two years, it really seems like its been much longer. Your story is truly a miracle. We didn't know what would happen when you were born. All we could do was hope and pray that you would be strong enough to beat the odds and live a full and happy life.

After you were born, it became clear very quickly that your CDH was on the severe end of the spectrum. Severe enough to need ECMO, to be on a ventilator for the first 5 weeks of your life, to reherniate three times after your first battle. You've had so many hard fought battles for such a little girl. Not just to survive, but to thrive and have the amazing life that you have.

We've come to know many families like ours over the last couple of years. And I'll never understand why it is that we have been so blessed to have you here with us. We aren't any different, weren't any better prepared, didn't have any other reason to be so lucky to be holding you in our arms today. So many beautiful babies have fought just as hard as you. So many parents have prayed just as hard for their little ones. I will never know why our story has taken the path it has, but I couldn't be happier or more appreciative to have you.

I hold you a little more tightly, watch you sleep just a little longer, kiss you just a little more often, and watch you in amazement over and over, because I know what a blessing you are. Your first steps and first words meant so much to us, because there was a time when we weren't sure if they would ever come. To see you as a happy, giggling, ornery two year old just like any other is nothing short of a miracle to me.

Before you were born, you were meant to be just the way you are. And we couldn't love you more, for every bit of what that means.

Love,
Mommy & Daddy

24 Months Update

noreply@blogger.com (Jen) — Tue, 09 Mar 2010 22:26:00 +0000

Notice how I called it the "24 Months" update? I just didn't want to officially call her 2 years old yet. The big day is tomorrow! So I'll call her 24 months old for now, which cracks me up because I think it's ridiculous when people refer to their kids as being 37 months old. Just say three, people! When random strangers ask how old she is while we're out, I've just been saying she's 1. And I always kind of get a weird look when I answer that way. Like I'm some kind of weirdo, because I don't refer to my child's age in months. Yes, this is Sofie. She's 283 months old today!

I understand referring to your baby's age in months up until they're a year old, of course, and then maybe even until they turn 2 because they are so developmentally different from month to month over those years, especially when talking with people you actually know, and haven't just met on the street. But after 2 years, it's really time to make the jump to 1/2 years. (i.e. Sofie's 2 1/2 years old today!) It's part of the Big Kid Status. Ok, on with the update.

At her 2 year well visit with Dr. Y. she weighed 21 lbs, 10 oz. and was 33 1/4" tall.

Following EAT.SLEEP.PLAY.LEARN from the last update (at 22 months - ha!), not much has changed other than the LEARN part. I'll just let you refer back to that last update for the EAT.SLEEP.PLAY parts.

There's been an explosion of chatterboxing these last few months, and she's greatly increased her vocabulary. In the past few weeks, she's also started to form very short sentences. She's getting so fast and skilled at doing tasks like putting puzzles together, drawing circles, learning colors and animals, communicating with us, taking care of her babies, cooking in her kitchen, etc. She has really become a fun, silly little girl who makes us laugh all the time.

Her vocabulary was 34 words in the last update. Over the last week or so, I've been trying to write down all the words she says now. I knew she was saying a lot of new things, but after I started writing them all down, I was amazed. When we saw Dr. Y. at Sofie's 18 month checkup, she was only saying about 8 words. He said that was just fine, and that by 2 years old, she'd be saying 30-50 words. I remember thinking, "Yeah, right!" I thought if she was saying at least 20 words, I'd be happy with that. Now she's saying more than 70 words! Wow, Sofie!

Vocab

circle
puppy ("piyyy")
poddy (sounds the same as puppy)
poop
stinky
Hoo Hoo (her beloved stuffed Monkey, soon to be featured in Sofie's Favorite Things)
Abby
up
help
yum
hotdog
yeah
oops
outside
hot
sshhhh
sleep
two
bath
phone ("sone")
keys
cat
pig
yellow
blue
pink
sock
shoe
coat
hat
pants ("meets")
eye
bink
dance ("sance")
bow
tv ("tee")
purse ("poos")

Phrases

Baby sleep...sshhhh
Hoo Hoo poddy
Thank you
Welcome
Here it is...or...There it is
Where'd it go?
All gone

Animal Sounds

How does a dog go? - woof ("oof")
...puppy - (pants like a dog)
...horse - neigh
...pig - "kkkccczzzhhh" (there is no way to type this sound, but it's hilarious)
...duck - quack ("kack")
...cow - moo "oooooooo"
...monkey - "hoo hoo"
...chicken - "bauk bauk"

Here are a few pictures of Sofie being goofy at dinner the other night. Notice the bedhead pigtails and the extra two hairclips in her hair. Definitely a "Daddy" hairdo!

We have fun birthday plans for Sofie tomorrow, and a party this weekend. I'll post pictures soon!

What's with the slacking?

noreply@blogger.com (Jen) — Tue, 02 Mar 2010 20:20:00 +0000

I haven't been posting much on the ole' blog this year. We've been pretty busy, and so far 2010 hasn't been great. But hopefully the rest of the year will be much better. And we've definitely had worse for sure! Thankfully, Sofie has been doing really well, for the most part. We started out the year with colds and coughs and sore throats, etc. When Sofie has a cold she doesn't eat well at all, and that's a big battle considering her past problems with feeding.

For the first 6 weeks we battled colds and such. Once that was finally over, Kenny and I got food poisoning. Actually I got it twice before we figured out what the culprit was - a bad batch of milk. Thankfully Sofie didn't have any of our milk! Neither one of us had ever had food poisoning before. We always seemed to have stomachs of steal, especially Kenny. But, wow, we were sicker than dogs with this. At least we took turns getting it and didn't both have it at the same time. And I can't imagine how bad it would have been if Sofie had gotten it, so I was more than happy to take a second turn in her place.

After all that, things were looking up. Then Kenny must have thought we were being too boring. He decided to put a little pizazz back in our lives by having two - yeah TWO - emergency surgeries within 8 days of each other. Not cool dude. You're running out of nonvital organs to give up for Lent.

The first surgery was on Friday, the 19th. I was out with some friends on Thursday night, and Kenny was home with Sofie having a gallbladder attack. Guess who was having more fun? He started trying to call me a couple of hours into it, but I didn't hear my phone ringing for another hour after that. Yikes! I felt so bad!!

I suspected he'd had a gallbladder attack about a year and a half ago one night, but they never did diagnose it in the ER. He hadn't had any more problems since then. But when I finally got his messages that night I figured that's what was happening again. My friend, Natalie, followed me home and stayed with Sofie while I took Kenny to the ER. Thanks, Nat!!!

After a few very excruciating hours in the ER, and his labs had all come back normal, we were waiting for an ultrasound. He was still in a lot of pain, but tough guy that he is, wanted to go home so he could still go to work on Friday. Uh, yeah. Finally he had an ultrasound, and his gallbladder looked so bad, the surgeon decided he had to stay and have it out immediately. Usually with a bad gallbladder they send you home and you schedule your surgery to have it out in a couple of weeks or so. So this was bad. And he wanted to go to work. Yeah, he didn't. He had surgery instead.

They said it would take an hour or so, but 2 1/2 hours later his surgeon (who's done a couple thousand of these) came out and said he's only seen a handful that looked as bad as his. He couldn't believe Kenny hadn't been complaining of pain for a long time. He had to stay in the hospital for three days, and then came home that Sunday afternoon and was back at work on Tuesday.

He was recovering really well. His pain was slowly improving, no fever, everything else returning to normal, etc. Well enough to stay home by himself with Sofie Friday night while I worked. I was sleeping Saturday morning after work when I heard him come upstairs in major distress. He was really pale and sweating and in really horrible pain, worse than any pain he'd had with his gallbladder attack. He said he felt like something had suddenly exploded, and he was burning everywhere inside.

I've never seen him like this before, and I was immediately worried that a) he was bleeding out somewhere internally from his surgery, or b) had an abscess (pocket of infection) that had ruptured, or c) had acute pancreatitis, which can happen after gallbladder removal, and can be extremely serious.

After taking a minute to throw on pants and shoes and decide between driving and calling an ambulance, I threw us all in the car and flew to the ER (we have three ER's within 2 minutes of our house). We were there within 10-15 minutes of onset of his symptoms. For the next 4 1/4 hours he remained in the worst pain of his life, while we were treated horribly by the ER staff. I know, as a nurse, there are a lot of whiney, annoying, crazy drug-seekers out there. And as a caregiver you may think that all you like, but it's never appropriate to treat someone that way. I'm appalled at the care, or lack thereof he received in the ER. Twice, I had to leave his side to make someone come help him.

Finally they realized we weren't crazy, and his appendix needed to come out immediately. So he went to the OR for the second time in 8 days. Not only was he in horrible pain because he had a very infected appendix that was close to rupturing, but his pain was intensified since he had just had his gallbladder removed a few days before. For that reason they couldn't remove his appendix laproscopically, but had to do an open appendectomy instead. When they opened him up, they found a third reason for his excruciating pain - bile flowed out of his incision. Apparently he also had a bile leak following his cholecystectomy (gallbladder removal). More than half a liter of bile had been sitting freely in his abdomen for the past week. Triple ouch.

Monday morning he had a HIDA scan to see if his bile leak was still active. Thankfully it didn't look like he was leaking any more bile, and they had rinsed and suctioned out most of the bile that had been in there during his appendectomy. The rest of it seemed to be reabsorbing, and he was healing and starting to feel better.

He was able to come home today, and is doing much better, but obviously still in quite a bit of pain. He was able to keep his sense of humor throughout most of this though. He told me he was giving up his gallbladder for Lent last week. This week he said he was also giving up his appendix. Overachiever. He also said it's nice when your organs almost explode on a Friday or a Saturday. That way, you don't miss as much work. Haha. He'll be here all week folks!

We have the best friends and family. We had so many offers of help from everyone, and our family came right away and stayed to help take care of Sofie. We love you guys! But seriously, we all seem to meet up and hang out in OR waiting rooms entirely too much. There are these things called family BBQs that normal people have. I think we should try those instead. We shouldn't all be able to rank the hospital cafeterias in town. It's not normal.

Help Save Babies Like Sofie...AGAIN!

noreply@blogger.com (Jen) — Fri, 26 Feb 2010 21:01:00 +0000

Our 3rd Annual CDH Awareness Blood Drive is set! It will be held on Wednesday, March 31st (CDH Awareness Day) from 10:00 am - 3:00 pm at the same location we were at last year:

Rees Masilionis Turley Architecture
908 Broadway
Kansas City, MO 64106
1st Floor Lobby

Google Map It!

WHERE TO PARK

A huge thanks to RMT for hosting our drive again this year. Without you guys, we couldn't make this happen!

Last year we asked Team Sofie to donate blood, and Wow! Our goal was 30 donors, and we had 41 people come to donate!! You guys are awesome!

We couldn't have done it without the help of Team Kinley. So we are teaming up with The Melchers again this year, too. The girls have grown up so much since last year. We're excited to see them to run around and play together!

We're also very excited to be adding Team MJ this year. For those of you not familiar with MJ's story, he was also at Children's Mercy like Kinley and Sofie. MJ fought very bravely for 35 days before becoming an Angel. His identical twin, Will, is healthy and happy and cute as a button. MJ's Mommy and Daddy have been doing some wonderful things to honor MJ's memory, including MJ's Memories and Bracelets for Awareness, and we're honored to have them join us for the blood drive.

Since our goal last year was 30 donors, and you all helped us exceed that by reaching 41, what else could we do but raise our goal?!? This year our goal is at least 50 donors. Come on, Team Sofie, I know we can do it!

CDH babies like Sofie, Kinley, and MJ often need lots of blood transfusions, and their lives depend on donors like you. Sofie received approximately 40-50 transfusions of blood and blood products like platelets while she was on ECMO. She wouldn't be here if it weren't for generous people who volunteered to donate blood.

I know many of you have donated several times in honor of Sofie, and that means a lot to us. Thank you! If you've never donated, please consider it. The first time I donated blood was at our drive last year, and it was so easy! Each donation yields about 1 pint of blood, which can help up to 3 people in need of blood or blood products. Be somebody's hero!

You can sign up for our drive online. It's quick and easy...

Log on to www.savealifenow.org If you haven't registered already, you will need to register before you can sign up.
Select "Schedule an Appointment" on the right side of the screen.
Find the drive by entering sponsor code "sofia".
Click on our drive, which is listed as "Rees Masilionis Turley Architecture 1st Floor Lobby"
Click the "schedule" link to the right of the time slot you want to sign up for. You will receive a confirmation once your appointment is scheduled.

If you aren't able or don't wish to sign up online, I can sign you up. Just email me at jen@sofiascdhstory.com with the following information:

Your first and last name
Your zip code
Your email address or phone number
The time slot you prefer (1st and 2nd choices)

Here is a LINK to the sign-up schedule, so you can see which time slots are still available. If the time slot you want is already full, please email me. We can make it work!

This post will remain at the top of this column until after the blood drive for easy reference. Hope to see you on March 31st!!

Nice Duds!

noreply@blogger.com (Jen) — Thu, 11 Feb 2010 03:45:00 +0000

Claire's Mommy, Cindy, is making CDH Awareness shirts, and 50% of her proceeds go to The Parker Reese Foundation if you order by March 31st. You can customize the design, fabric, font, lettering, etc. All for $20 and free shipping, and you'll be helping the PRF at the same time! She made this one for Sofie...

So cute! Thanks, Cindy! She has tons of other cute and customizable designs, too. Check out her Etsy store, Embroidery by Cindy. You will not be disappointed. I promise! The hardest part is choosing just one!

And how would you like your eggs?

noreply@blogger.com (Jen) — Sun, 07 Feb 2010 12:30:00 +0000

Goatee, please.

3rd Annual CDH Awareness Blood Drive

noreply@blogger.com (Jen) — Fri, 05 Feb 2010 16:00:00 +0000

Mark your calendars! March 31st will be our 3rd annual blood drive. We are teaming up once again with Kinley's family, and are excited to be adding MJ's family to the mix this year as well!

RMT has very graciously offered us space to hold our drive again this year. Thanks guys!!! It will be held from 10am-2pm at 908 Broadway in downtown KC. More details to come on how to sign up as soon as I have them...

Speech Eval

noreply@blogger.com (Jen) — Fri, 05 Feb 2010 04:23:00 +0000

Sofie had a speech evaluation with a speech-language pathologist last week through FirstSteps, our early intervention program. We didn't think her speech was delayed, but since she was eligible for the evaluation, we decided to do it just to be sure she was on track.

As many of you know, speech and hearing are closely related. Sofie is considered to be at a higher risk for late-onset progressive sensorineural hearing loss because she was on ECMO and had to take ototoxic antibiotics when she was a baby. Some studies even show that ECMO babies who also had CDH are at an even higher risk for hearing loss than babies on ECMO for other reasons.

Because of this high risk for hearing loss, post-ECMO babies should have frequent hearing screenings into childhood. Many parents have their post-ECMO kiddos screened every 6 months. We have not had concerns about her hearing so far, but should still be having her screened regularly.

She had her initial "newborn" screen done around 2 months of age, which was normal. We should have had her screened again around 6 months and 1 year of age, but 3 reherniations took precidence, and hearing screening got pushed to the back burner. I should have set up a hearing screen at the end of last summer. But after the crazy year we'd had, we were just relieved to be getting a break, and scheduling more Dr's appointments was not high on my todo list. Then cold/flu season got here, and I didn't see the necessity of bringing my well child into a Dr's office for a hearing screen during flu season when we haven't had cause for concern.

I know. Excuses, excuses. Bad Mommy. So our plan is to have her hearing screen done in early May after cold/flu season is over. We've been "studying" for the hearing screen - haha, which is actually really funny to watch. Maybe I'll catch this on video someday soon.

So back to the speech eval - since she could get a free evaluation done by a professional IN OUR HOME (seriously, how great is early intervention!?!), we just couldn't say no. The evaluation went great, and I'm glad we did it. She scored right on track at 22 months. Yay, Sofie!!

How'd we get our stubborn toddler to perform on command for someone she'd never met, you ask? How'd we get her to dazzle the evaluator with her astonishing attentiveness and her streamlined test-taking skills? Get her to display her entire vocabulary, use each letter of the alphabet she can say in a word, follow two and three-stage commands, and bunches of other things that were part of the test that I don't remember? Cake. These people are professionals, remember? They asked her mother.

Sofie played while we talked. The speech-language pathologist asked me gazillions of questions that started with "Does Sofie...?" and I answered yes or no. The test was scored and that was it. Sofie barely said two words. Much more efficient, and I dare say more accurate, than hoping she'd perform for the test the way we see her perform every day for us.

Now if only the hearing screen goes as well. If there are going to be headphones involved, I see a tantrum in our future...