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)

Tube and Ventilator Free!!!!!!

>> Friday, July 17, 2009

They just extubated Kamryn and she is breathing completely on her own right now! No tubes!!! They have not needed to use CPAP breathing assistance at this point and she is doing fine. We know this could change and her lungs might get tired as the day progresses, but right now she is doing great. I am about to head up to the hospital to spend the day with her and will post tonight on how she did.

Thank you for all of the thoughts and prayers for our little girl! I'll fill everyone in on the details tonight along with pictures.

Shawn

16 comments:

Anonymous July 17, 2009 at 11:07 AM: Way to go Kamryn girl!!!!! We love you and pray for you every day!
Aunt Judy and Uncle Bob
Anonymous July 17, 2009 at 11:19 AM: Awesome, Awesome, Awesome!!! Can't wait to hear how the day goes! She is kickin butt! Keep up the good work Kamryn!
Love,
Paige
Ashley July 17, 2009 at 11:23 AM: Glad to hear that. Hope she continues doing well!
Sarah and Barry Mayer July 17, 2009 at 11:59 AM: Yippee! Extubation is one step towards getting home, way to go Kamryn!
Jay, Allison, Grant, and Reed July 17, 2009 at 12:12 PM: All thanks and glory to God!
Maxton's Mommy July 17, 2009 at 12:52 PM: :-) Go Kamryn!!! I'm doing a happy dance. Many prayers that she can keep up the good work!
Ash
Anonymous July 17, 2009 at 1:12 PM: Shawn,
I have been following your blog, since before Kamryn and Brooke arrived. I am so very happy for all the wonderful progress Kamryn has made, and she has such a sweet and loving family to support her. You, and Stephanie have truly helped Kamryn along her journey, with all the love that is reflected through your touch, and reassuring words. May God continue to bless you all, especially Kamryn, and I will be praying that she continues to take those "baby steps" to a full recovery.

Most Sincerely,
Dale
A Mom-Mom from NJ
The Griffin Family July 17, 2009 at 1:40 PM: PRAISE GOD!! We are praying right now that her lungs stay strong and continue to work on her own! That is so awesome! You guys must be OVERJOYED!!
The Griffin Family July 17, 2009 at 1:44 PM: One other thing...what is the expected time that they will keep her there if she doesn't have to go back on a vent? How long until you may be able to bring her home?
Anonymous July 17, 2009 at 2:16 PM: Awesome Shawn and Stef
She most definitely is a figther and I guess she is ready to come home.

Jake
Anonymous July 17, 2009 at 2:43 PM: Kamryn's biggest cheerleaders have been cheering and praying from the sidelines. She wants to see those Red Raiders in the fall.
Glory to and PRAISE God.
You gooooooooo, dear little one.
Cheers for Hollie and Brooke, too.
Our love,
Bronwyn, Jim and Matthew
Tracy Meats July 17, 2009 at 3:07 PM: Way to go Kamryn!!! Praying she has a good day and she has the strength to kick that vent out the door!! Tears of joy. Look forward to seeing your princess in pictures, off the vent.

Hugs, Tracy
Anonymous July 17, 2009 at 3:08 PM: KAMRYN IS MY HERO!!!!

We are so proud of that amazing baby! Madelyn's face lit up with joy when I shared the news with her. We are all looking forward to seeing pictures of her almost tube free.

Praise God!

Love,
Auntie J, Uncle T and Mads.
Anonymous July 17, 2009 at 5:26 PM: YEA, Kamryn! It won't be long til all 3 sisters are all at home together! What a wonderful day! Thank you GOD! Love ya'll, Courtney
Elizabeth July 17, 2009 at 7:56 PM: Yeah Kameryn - and Kudos to Mom, Dad, sisters, nurses, doctors - all staff!

Keeping you all in my thoughts, prayers and sending some Lung Function chants too,
Elizabeth
Timothy and Jenny July 17, 2009 at 8:43 PM: Go Kamryn, go! You did it girl, keep it up. Congrats on such a big accomplishment. Saying prayers that she continues to get stronger every second.

Jenny

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!

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Tube and Ventilator Free!!!!!!

>> Friday, July 17, 2009

16 comments:

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

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