Latest OB Appointment

>> Wednesday, March 11, 2009

This entry will be a bit long because there is a lot to update. First, the drama with the surgeon and MRI. Dr. Zaretsky has once again saved the day and we learn more and more each day just how much he cares about us and our little girls. Fear and frustration with everything going on led Shawn to feel like he was not responding to our concerns. In reality, it is clear now that he was working behind the scenes to make sure we were taken care of and that everything would get fixed for us. He asked Dr. Savani, Chief of Neonatology, to contact us and help us work through our issues and questions. Dr. Savani spent over an hour with us on the phone on a Friday night to answer all of our questions and listen to our concerns. He is personally looking into our schedule and situation and working through the logistics to get everything worked out. We truly felt like the weight of the world was lifted off our shoulders after speaking with him. He has the same unique compassion that Dr. Zaretsky has and now it is very clear what Dr. Zaretsky was doing. He had a plan and we just needed to give it some time to play out. Based on the person he is and everything he has done for us, he deserved the benefit of the doubt. Lesson learned. Sometimes it is just so hard to give up control!! We could go on and on about how amazing Dr. Zaretsky and Dr. Savani are. We truly feel blessed to have them handling our case and our comfort level is higher than it has ever been since we started this journey.

Today was our visit with our OB, Dr. Trylovich. Babies look AWESOME. The sono machine is so grainy compared to Zaretsky's, so it's hard to tell what's what. We didn't have our original sono tech, but she did confirm of course, that stomach and intestines are both definitely up. She could see part of the liver down, but she couldn't ever see the other part up. I just don't know how to take that. It kind of has me concerned. But, I'm not going to worry. I just can't. We saw Kamryn swallow and move her jaw, like she was learning and practicing taking a bottle or pacifier. Her stomach was very full of fluid, but they said that's normal with CDH. She also said that her bladder was full, which was really what we need. Brooke was waving hello and even smiling at us. They both had their left hands over the left side of their face or forehead. DRAMA QUEENS ALREADY!!! Kamryn's hr was 146 and Brooke's was 138. They are measuring about 1 pound 5 ounces, and 1 pound 4 ounces.

Then, went to see Dr. Trylovich. Her very first comment was that she reads the blog. Shout out to Dr. Trylovich!!! You and your staff rock, we love you!!! She was immediately concerned about the drama and wanted to know if all was okay. I told her that we just felt like we were being passed on to someone else for our questions, and wasn't given the compassion that we have been spoiled with in the past. I reassured her that we got overly anxious and still love the team that we have been blessed with. We are just learning the process and working through our hiccups.

I asked her about my heartrate, and she said it's totally normal, especially with twins. Unless I'm dizzy or weak, I'm good. Talked about Hollie's big sister class. Need to get her registered to take one when I'm about 32 weeks. She said we will schedule the delivery in the next visit or so. She said that she only has one obligation to make in June, and it's early, so I think we're good. She's working on getting her temporary privileges over there for the delivery and once she has those, then we can schedule.

When I laid back for her to measure my tummy, my stomach was very odd looking. The right side of my belly button was HUGE, and the left side was just kind of empty looking. She felt it and said that it was a butt. It was just the cutest thing in the world. She also pointed out my first battle scar for this pregnancy (stretch mark). Darn it, I was doing so good too!

Next week is a big week for us filled with a lot of anxiety. It's Spring Break and I have the week off! Yeah!!! I'm happy for Hollie, b/c she really needs a break away from school, and some good quality time with me and Shawn, as well as her friends. So, I promised her she could have some playdates/sleepovers. I'm taking her to the Aquarium on Sunday with two of her friends, and then to McDonalds. Then, when we get home, she wants me to do their makeup for a fashion show. I'm going to be exhausted. And then, on Monday, I'm picking up her best friend Rylee to go see the Jonas' Brothers movie, and then home, of course, for another fashion show. Soccer practice is on Tuesday, and then, we're off to Houston on Wednesday. I plan on sleeping in the car, if my bladder will allow it. Thursday, we're going to the Space Center to look around and see the Children's Exhibit, etc. And then on Friday we will be at Texas Children’s Hospital to visit with their doctors and facility. We will also have our first MRI that should paint a very real and accurate picture of what we are dealing with. We are so eager to get this step over with, but we are filled with so much anxiety and hope all at the same time. If the liver is up and/or more organs are involved than we know of right now, we are going to have to regroup emotionally and mentally. We will have the results Friday and should be able to update everyone that evening.

We want to continue to thank our friends and family for all of the support we receive every day. We are so blessed to have such a large network of support and you all have been our strength throughout this journey. We have also met so many strangers who are now friends through this blog and other channels that pick us up with just the right words and support. We received the cutest little hats for the twins with their names embroidered on them from Sheryl and Tom Trost who are expecting Jaime to arrive in May with CDH. You guys rock and are so very thoughtful! It is hard to put into words the positive impact all of you have had in our lives and we just want you all to know how much you are appreciated!

Stephanie and Shawn


Maxton's Mommy March 11, 2009 at 7:27 PM  

You guys hang in there. Sounds like a good appt. to me. :-) Thinking of you!

Craig and Kristi Kuehl March 11, 2009 at 7:57 PM  

Sounds like alot of your doctor "stress' has been put to rest. Looks like the girls are going great and you had a good appointment:) You are in my prayers...I am having a rough day with the news of Addison. Please say a prayer for Marion & Jason...

Sky + Carla March 12, 2009 at 1:37 AM  

Hey guys,

Good to hear about the doctors :) and boo about the stretch marks (lol)
Next week sounds like an exciting week make sure to take pics :)

About the liver: try not to worry so much. Joseph had the liver down and didn't make it while I know of other CDH babies who had liver up and are doing well.
This CDH monster is all about the lungs and the hypertension.

We are praying for you guys and the girls. If you ever have any questions, feel free to email :)

~ Carla - Joseph's mom - LCDH - 2.3.09 to 2.26.09

Fer March 12, 2009 at 9:22 AM  

I am praying for you and lil Kamryn.

Tracy Meats March 12, 2009 at 11:35 AM  

It sounds like the doctors at Dallas Children's were on top of things and do care about your care. Your OB appointment sounded like it went well too. Best wishes for a good week and your time spent in Houston will hopefully lead you in the direction to take with the girls. Praying for Brooke and Kamryn and you continue to have a healthy pregnancy, even if the stretch marks sneak up on you! Those battle scars are well worth it though.

Sending you much love and positive thoughts and energy, Tracy - mom to Ian

P.S. Give your belly a rub and tell those girls to keep up the good work and a big hello from Wyoming!

Elizabeth March 12, 2009 at 9:37 PM  

I love the description of the butt! That was cute. I'm glad they are taking care of things - and we all had those moments with appointments and doctors. There is so much they do we don't really realize.

I agree with Carla - it is all about those lungs and PH.

Keeping you all in my thoughts, prayers and Lung Function chants,

Liz and Shane March 14, 2009 at 10:24 PM  

Glad your appt went well. We are praying for your little girls.

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