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)

We finally have some pictures of our girls to share with everyone thanks to my brother. The firewall here is preventing me from making the slideshows or uploading pictures. I am about to go ballistic :)

The pictures are on the right hand side of the screen and were taken yesterday of the girls in the NICU. Hopefully we will be able to get some more today when we see them. We have to wait until noon to go down to the NICU, but I think Stef is going to be able to make it down there. Her pain is much better today and she has been up walking around a couple times.

She did want me to tell everyone that has tried to contact her that she will be getting in touch soon. She has just been hurting so bad that it is hard to talk or do much of anything.

From what we heard earlier both girls are still the same and stable which was great news. It was a totally uneventful night so we are praying that today remains the same way.

I'll post again this evening to let you all know how things are going.

Shawn

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!

15 comments:

reyacono June 18, 2009 at 11:10 AM: You are all amazing -- you, Stef, Hollie, the girls, your families, and your community. Robyn and I are thinking of you and praying for the best. Thank you for taking the time to share your journey in the midst of everything that is going on.
Love,
Becki
Hope for congenital diaphragmatic hernia June 18, 2009 at 11:47 AM: Thinking and praying for all of you. So happy to hear everyone is stable right now. The girls look SO good despite their troubles and cdh that Kamryn faces.

Praying hard in Iowa. Hang in there Mom and Dad....just remember that Jesus is holding them in His strong arms.

~Terri and Ava
http://avaslifewithcdh.blogspot.com
Anonymous June 18, 2009 at 12:22 PM: The babies are so beautiful! I am so proud of your strength and courage. Stef, when you know what you need help with - let me know. I am here. Love, Courtney
Craftysis7 June 18, 2009 at 12:23 PM: Praying for you all and that you have a very good day!!

Sissy
Nashville, TN
Laurie June 18, 2009 at 12:27 PM: They are both so beautiful! Praying for them!
Anonymous June 18, 2009 at 12:39 PM: They are beautiful!! Prayers are still flowing!
Darla Gardner
Jackifer June 18, 2009 at 12:48 PM: God is soo good!!! I'm amazed at these beautiful girls. Stef - You are amazing! What a great mom you have been...I can't wait to see them and snuggle! Shawn, I bet you are so proud. Still praying hard. Love coming your way.
Jackie
Tracy Meats June 18, 2009 at 1:10 PM: Brooke and Kamryn are BEAUTIFUL!!! Stephanie and Shawn, you did a great job bringing those two precious gifts into the world. Hope you are feeling lots better Stephanie, many prayers coming your way. Praying for the girls...hope Brooke feels lots better very soon and Kamryn continues to remain stable!! Here is to a good and strong day for your beautiful girls!!

Much love, Tracy
Anonymous June 18, 2009 at 1:12 PM: They are gorgeous! Thanks for sharing the pics with us! We are keeping y'all in our prayers and hoping that Steph feels better soon!
FaithCDH June 18, 2009 at 1:43 PM: Good job keeping those girls in there! They look great! Praying for both girls.

Love,

The Miles Family
The Curtis' June 18, 2009 at 3:21 PM: They are beautiful! Hope all continues to be uneventful! Keeping all of you in my thoughts. Take care.
Rachel Dominguez June 18, 2009 at 3:57 PM: They are just beautiful! Thanks for sharing.

Praying for you!

Rachel
Maxton's Mommy June 18, 2009 at 4:24 PM: what beautiful babies!!! Many prayers that they keep up the good work!!!
Ash
Tandi June 18, 2009 at 4:46 PM: What beautiful miracles you have! They are both beautiful blessings! What an amazing God we serve. Have a wonderful day and just continue to lean on God for the comfort and strength you need. Love ya! If you need anything please call.
Kathryn Olmstead June 18, 2009 at 6:32 PM: You have some good size twins! My goodness!! They are beautiful!! Congrats and GOOD LUCK!!

We will be praying for your girls!

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>> Thursday, June 18, 2009

15 comments:

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

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