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)

Not trending well

>> Wednesday, July 1, 2009

We have hit another wall unfortunately with Kamryn. We have stayed pretty constant on ventilator settings for a few days now, but today her carbon dioxide has elevated. We want to see this in the 50's, ok with the 60's, and concerned with the 70's. Earlier today her CO2 was 76 and tonight her CO2 was 80. They raised the rate to 53 breaths per minute from 48. No other changes were made. They will take another blood gas at 4:00 in the morning to see where she is at. I am so concerned right now about the direction things are going that my stomach is completely knotted up. I am losing some confidence in a number of things and it may just be that I don't understand everything that is happening. I truly feel like I am about to explode right now. I will probably wear a hole in the carpet from the pacing I will be doing all night. Please pray for our little girl to get over this hump and get back into positive territory.

Shawn

16 comments:

ashley ohls July 1, 2009 at 10:59 PM: I've been praying for little Kamryn, and I hope she continues to stay strong. Love you all!
Anonymous July 2, 2009 at 1:19 AM: Praying through the night for K., her medical team and her parents.
Christina July 2, 2009 at 7:17 AM: Lots of prayers for your precious one!
Michael and Elizabeth Reeve July 2, 2009 at 7:25 AM: I'm sorry for the delay in posting but please know that you're always in my thoughts & I pray that baby K progresses. I long to meet you & your beautiful girls. We have had some very hard days in the NICU & no one can discribe the difficulty of watching your little one go backwards. Our only help was to place James in God's hands every night before bed...he gave us the courage.

Sending big love to you all.

Mike, Beth & Baby J xxxx
Anonymous July 2, 2009 at 7:50 AM: Prayers and good thoughts to Kamryn and your family. Please let me know if there is anything I can do to help.

Love,
Pam Szoke
Maxton's Mommy July 2, 2009 at 7:59 AM: Hang in there guys. The tough days are always so draining and leave you feeling powerless and scared. Little Kamryn is a fighter and she will get over this bump.You are in my thoughts always.

Ash
Anonymous July 2, 2009 at 8:24 AM: We are praying for your family, and especially Kamryn. We are praying for healing for Kamryn. The Lord can do it. All things are possible.
Love, Maggie and Jim
Craftysis7 July 2, 2009 at 9:26 AM: Praying for the Lord to give you his peace that surpasses all understanding. Praying for your little Kamryn to have a very positive day! Hang in there, God is in control!!!!

Sissy
Nashville, TN
Unknown July 2, 2009 at 9:47 AM: Kamryn is in our prayers, along with your entire family. We continue to lift up the medical team working with Kamryn, as well.
Much Love, Kimberley, Jason & Emma
Anonymous July 2, 2009 at 11:11 AM: Praying for Kamryn! Keep fighting little one!

Karla
Mom to Brooke and Braden (RCDH born 3/13/08)
Holly and Bo July 2, 2009 at 11:24 AM: You don't know me...I link to your blog through Sarah G. as I'm good friends with her sister-in-law, April. I've been reading your blog some and am praying for your little girl. My husband and I just had our son May 3rd, 8 weeks early. He spent 30 days in the NICU and although he did not have to have surgery like Kamryn, I can tell you we experienced so many of the emotions you write about it. Feeding was our biggest struggle. I don't know how many times they started and stopped them but eventually he got on track. No one can quite understand the 2 steps forward, 1 step back kind of stress like a parent who has had a child in the NICU...I sympathize with the pain you are experiencing. Hopefully today has been a good day for you and your family. You are in my thoughts.
Tracy Meats July 2, 2009 at 12:12 PM: Fight Kamryn Fight!! Praying that your princess has a good day today and her CO2 levels have come down. There will be bad days with the good and I know it is the hardest thing to watch and go through. I can relate to feeling like you are going to explode and I did on many days Ian was in the NICU. Hope Kamryn gets over this hump soon. Sending you lots of positive thoughts and energy today!!

Much love, Tracy
Bethany July 2, 2009 at 2:08 PM: CDH is such a roller coaster, but Kamryn has laid a strong foundation...praying this is just a tiny speed bump. I think of you guys all the time.

Bethany Gillham
The Griffin Family July 2, 2009 at 7:51 PM: Praying like crazy for you guys. She is such a fighter already...she will pull though the little rough spot. Keep us updated!
Kathryn Olmstead July 2, 2009 at 8:06 PM: I know how you feel- when Kayla had her CO2 up.. it was frustrating to know you couldn't help. I can't believe they are waiting till 4a.m.... Kayla at one point was getting a blood gas every two hours. Hang in there.. the roller coaster ride is bumpy, but the high bumps are so fantastic!! :) And eventually one day they will be continuous! :)

We are praying for Kamryn and her family! :)
Aunt Judy and Uncle Bob July 3, 2009 at 4:11 PM: The blog is wonderful. I can't wait to read it every day. Our hearts are with you and Kamryn. She is so precious, and such a part of the family already. We love you, and keep you close in our thoughts and prayers.
Love,
Judy

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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Not trending well

>> Wednesday, July 1, 2009

16 comments:

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

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