Kamryn Hope's CDH Blog

About our family

Shawn, Stephanie, Hollie, Brooke, and Kamryn live in McKinney, Texas. We have battled infertility problems throughout our marriage, but after numerous IVF attempts we were blessed with Hollie 7 years ago through a frozen embryo transfer (FET). Since her birth in 2002, we attempted numerous IVF procedures trying to once again become pregnant. After numerous failed attempts, we found out in October 2008 that we were finally successful. To our surprise, two of the three embryos we transferred implanted and we were going to be the proud parents of Kamryn Hope and Brooke Ashlyn. Our absolute joy turned to fear and confusion at 13 weeks when it was discovered one of the twins, Kamryn, had a congenital diaphragmatic hernia (CDH). We hope this blog not only allows our family and friends to share the joys of Kamryn and Brooke, but also the struggles we faced as Kamryn battled and overcame her CDH condition.
Shawn, Stephanie, Hollie, Brooke, and Kamryn
Stephanie: email
Shawn: email

History of Appt's

12/11 - 1st OB appt (10wks)
12/29 - NT Sono-Possible CDH (13wks)
1/8 - OB appt (15wks)
1/21 -CDH Confirmed Sono (17wks)
2/5 - OB appt (18wks)
2/12 - Amnio/Ped. Cardiologist (19wks)
3/05 - Hi-risk OB appt (22wks)
3/11 - OB appt (23wks)
3/20 - Children's Houston Consult (24wks)
3/26 - Hi-risk OB appt (25wks)
4/2 - OB appt (26wks)
4/3 - Children's Dallas Consult (26wks)
4/16 - Hi-risk OB appt (28wks)
4/17 - OB appt (28wks)
4/24 - Pediatric Cardiologist (29wks)
4/29 - OB appt (30wks)
5/7 - Hi-risk OB appt (31wks)
5/11 - OB appt (31wks)
5/20 - Hi-risk OB appt (33wks)
5/21 - 2nd MRI
5/27 - OB appt (34wks)
6/2 - Hi-risk OB appt (34wks)
6/8 - Admitted to Parkland Hospital (35wks)
6/17 - Delivery of twins (37wks)

Hi everyone!!! Didn't Shawn do a good job redoing the page??? I'm so proud of him!!! He worked so hard!!!

I've been getting a lot of emails lately asking how I'm feeling, so I might as well use the blog to let you know. Lately, I've been having rapid heart palpitations. Sometimes, it will happen just by sitting here doing nothing, and other times, it happens when I walk short distances. Shawn and I are keeping a very close eye on this, and we have already made my OB aware of this. We are seeing her tomorrow to talk more indepth about it, but I'm not too worried. Other than that, and the lovely side effects that come along with pregnancy (trouble turning over, getting out of bed, frequent urination, etc), I'm doing so good. I'm not feeling them move as often as I'd like, but I know that will change soon.

My hopes remain high for Kamryn. We pray every day for her survival and for her to get stable fast after she's born, so they can go in and do the surgery. We know she's a fighter, because each time we see her on the sono, she's the one who is moving the most. She's a little wiggle worm! We will post an update again tomorrow night after our doctor's appt.

Love,
Stephanie

James 1:17 "Every perfect gift is from God".

CDH Overview

Congenital diaphragmatic hernia (CDH) refers to a defect in the diaphragm that allows the abdominal organs (stomach, intestine, liver, bowel, and spleen) to migrate into the chest cavity in utero. Diaphragmatic hernia results by the failure of the diaphragm to close or to form at approximately eight weeks’ gestation. This migration of organs into the chest cavity, through the hernia, prevents the lungs from developing properly due to crowding and compression. Babies who have CDH suffer from small and underdeveloped lungs. This condition is referred to as pulmonary hypoplasia. Although hypoplastic lungs are the underlying threat to survival, the critical nature of the condition at birth is due to pulmonary hypertension or persistent pulmonary hypertension in newborns (PPHN) as a result of the underdeveloped lungs. Since this condition will be present “at birth”, it is referred to as Congenital Diaphragmatic Hernia as opposed to Diaphragmatic Hernia. CDH is known to occur in 1 out of every 3000 live births and currently has an average survival rate of 50%.

Our Medical Team

This is the medical staff committed to winning this battle:

Parkland/Children's of Dallas Fetal Program - Outstanding option for CDH care. The medical staff exceeded all of our expectations. If you are interested in a consultation, please email me for information.

Michael Zaretsky, M.D. - Dr. Zaretsky found the abnormality during our NT scan at 13 weeks. He has been a true blessing in guiding us through every step of this situation and coordinating all of our care. When we are lost, unsure, or just scared, this is the Doctor we turn to and place our trust in. He has put together a rock solid team with Leah and Sharon and we would be lost without them!
Courtney G Trylovich, M.D.- Dr. Trylovich is a wonderful OB and her staff is fantastic! LOVE HER! She is such a caring and compassionate Dr. that truly takes so much time with us at each visit. If you live in Dallas and want the best OB/GYN available, look no further than Dr. Trylovich!
Michael Day, M.D. - Dr. Day is our Pediatric Cardiologist and he is fantastic. He honestly would have spent all night with us answering questions. He was so thorough and genuinely cared that we walked out of there with everything we needed. We really can't say enough about the care we received from him and his staff.
Rashmin Savani, M.D. - Dr. Savani has been nothing short of amazing and we truly believe he has taken a personal interest in our care. Feeling like you have an advocate during this journey is priceless and he has done more for us than we could have hoped for. He is committed to doing what is right, improving care, treating patients with the utmost respect, and at the same time will shoot you straight on what's going on in the most compassionate way. What more could we ask for!
Diane M. Twickler, M.D. - Dr. Twickler's reputation in fetal imaging is remarkable and we feel incredibly fortunate to have her handling our MRI tests and interpreting the findings. She has been involved with a number of studies on CDH which I am sure helps in her ability to be so thorough with us on what she sees. She got it right when other centers were off the mark in our case. She is a wonderful person that knows fetal imaging better than most in my opinion.
Myra Wyckoff, M.D. - Dr. Wyckoff is one of the Neonatologists in the Parkland NNICU and although she was not Kamryn's primary doctor, she is nothing short of outstanding. Dr. Wyckoff is no nonsense and displays a desire and expectation to win everyday. Observing her during rounds, she is an outstanding educator to the staff. Her communication with us was always direct, honest, and to the point. Anytime we spoke with her, we left better informed and never confused. I would want her taking care of my child anytime and are just beyond impressed with her.
Stephen Megison, M.D. - Dr. Megison was responsible for fixing Kamryn's hernia and we could not be more pleased with every aspect of that experience. Dr. Megison is a great communicator, both before and after surgery and his work was nothing short of impressive. It doesn't appear that Kamryn will have any reflux issues and all her internal processes work normally. I firmly believe this is because of the care that he took during the procedure. Another positive is her scar which is almost not noticeable. Taking care to minimize this scar was important to us and he did an amazing job. He is very well respected and recommended by his peers and if any of my children need future surgery, he will be our first choice.
Parkland NNICU Nursing Staff - The nursing staff at Parkland are amazing and the ones we truly believe not only saved Kamryn's life, but expedited her recovery. The team in general was outstanding. Our four primary nurses are without a doubt what pulled us and Kamryn through this experience. Traci, Monica, Tamara, and Gretchen were our advocates, friends, and voice of reason each and everyday. They are gifted nurses that cared for our daughter as if she was their own. They genuinely exceeded our expectations everyday. We can't adequately express our gratitude, but we hope they know they are our heroes!

5 comments:

Maxton's Mommy February 4, 2009 at 7:08 PM: Hello Shawn and Stephanie. I am sorry to have to meet this way, but just wanted you to know I am praying for you little ones. I am due in about 4 weeks with a CDH baby and have been where you are. If you need to talk, please email me or post on my site. Praying for you!
holly February 4, 2009 at 7:57 PM: Found you through cherubs. I like the site. We have one for our little girl, www.rubyhope.com.
Anonymous February 4, 2009 at 9:42 PM: We are praying for Kamryn and are here if you need anything.
Fer February 5, 2009 at 10:08 AM: Hi! My name is Fer and I saw your blog link at CHERUBS. I just wanted to tell you that I am praying for you.
Fer
Mom to Juan Pablo (RCDH) and CHERUBS Mexican Rep.
Tracy Meats February 5, 2009 at 10:53 AM: I got your blog link through CHERUBS!! Your little girls, Brooke and Kamryn will be in my prayers. Praying for Kamryn that she will be strong and fight her CDH. CDH babies do amazing things and continue to believe in miralces. If you have questions or need to talk, I am here for you.

Hugs, Tracy Meats - mom to Ian, born with a LCDH on 4/3/04 and WY and CO State Rep. for CHERUBS

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>> Wednesday, February 4, 2009

5 comments:

Kamryn makes the local news (7/31/09)

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