34 Week Milestone!

We had a great appointment with Dr. Trylovich today and it was nice to celebrate the 34 week milestone. This was a somewhat critical cutoff for us to get to in order to give Kamryn a fighting chance once she is born. We needed to get to 34 weeks and hope to make it to 37 weeks. Both of the twins have amnio pockets of 8 to 9 cm which is getting close to 10 cm which we don't want. We aren't terribly concerned about polyhydramnios, but the possibility is creeping up on us. Stef is contracting a lot more lately which freaked us out a bit, but according to Dr. Trylovich, she expects Stef to have many contractions at this point so it is completely normal.

Based on Stef's history with Hollie going past 40 weeks and the current condition of her cervix, we aren't concerned about anything happening before 37 weeks so we are going to modify our plan. Instead of being admitted on June 3rd, we are going to try and push this out to around June 8th with a target delivery date around June 16th or 17th. If Kamryn's lungs look good with an amniocentesis that week, we will go forward with the delivery.

So that's about it for today. Now we just have to wait and get mentally prepared for this as much as possible. If you haven't been following their blog, Baby Avery is having a rough time right now as they try to take her off her ECMO machine. She sure could use your thoughts and prayers right now.

We also want to thank all of you for the support and taking time to comment on the blog. We love reading your responses and it means so much to us that you take the time to drop us a quick note!

Shawn

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What more could we ask for?

Than to have an appointment like we had today! It was nothing short of outstanding! We saw Dr. Zaretsky, our Maternal Fetal Medicine doctor and both twins are doing exceptionally well for 31 weeks. Brooke is over 4 pounds now which is actually further along than she should be at 31 weeks. Kamryn is right on target for a singleton pregnancy weighing 3.13 pounds. We were scared that Kamryn would start to drop off a bit due to being a twin, but she's holding her own.

We were concerned about the amniotic fluid level around Kamryn and it did come back higher than we wanted at a little over 9 cm's. Normal range is between 2-8 and she has always been closer to the 8 cm mark than the 2 cm mark, but she went over at this visit. Basically, because of the CDH situation, Kamryn isn't able to cycle the fluid as well as Brooke through swallowing and respiration. I know Kamryn is trying her hardest to do her part, but her little organs are just not in the right place. Fortunately, the elevated fluid level is somewhat to be expected and it isn't a cause for immediate concern. If it continues to increase, it could potentially be an issue that we will need to address, but right now it is fine.

Then it was time for THE measurement.......... Lung to Head Ratio (LHR - we would like this to be above 1.4 as it can indicate a better prognosis). For all of you CDH families out there, hold on tight because you won't believe this. Lung area was 8cm and head circumference was 26cm. Divide those numbers and you get an LHR of 3. I know, I almost fell out of my chair also. I think Dr. Zaretsky did also and he indicated she really does have a lot of lung tissue on the right side that you can clearly see on the sonogram. We re-measured and made sure we could clearly see all four chambers of the heart (standard and accurate LHR measurement has to be taken when you can see all four chambers of the heart on the screen). Just because the right lung is large doesn't mean there won't be severe pulmonary hypertension or tell us how many alveoli are present, but larger size does help. We were still unable to see any liver above the diaphragm which is terrific news. We were thrilled and CAUTIOUSLY optimistic. We have another MRI in two weeks and I think we will have definitive measurements at that point.

And then, Dr. Zaretsky needed to talk with us about something in June...... I could tell where he was going before he even said it. Vacation! Our MFM is going on vacation in June when we are 36 weeks. I really did almost fall out of my chair with this news. It's hard to put into words what he has meant to us through this journey and I can't imagine him not being in the room to bring these two little girls into the world. He is a doctor like no other and we sincerely believe he is a true blessing in our lives. At the same time, we are thrilled that he gets to take a much deserved vacation and this will prove to be an incentive to make it to 37 weeks when he gets back!

It's been a great day for our family and we continue to appreciate the thoughts and prayers everyone is sending our way! It's working!

Shawn

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OB Appointment

Whenever you are dealing with a serious medical condition and can walk out of a Doctor's appointment smiling, it has been a good day! We went to our OB appointment with Dr. Trylovich this afternoon and had a sono with Ginger. Ginger is great! It really is nice to have someone talk about everything they are seeing on the screen and spend so much time answering our questions by showing us with the sonogram. She spent a lot of time with us just explaining their orientation and where we are likely feeling each baby kick. All of our measurements are normal and they are still growing at the rate of a singleton. This was really great to hear and the gap between them in size is very small. Ginger was able to get some great profile pictures that we updated in the slide show.

Our nurse, Mary, took some blood for Stef's glocose test which should come back in a few days. I hate seeing blood getting drawn, so Mary and Stef got a good laugh as I almost passed out. It's just not my thing.

After all of that we were able to meet with Dr. Trylovich and she was incredible as always. When we talk about the babies or Stef you can just tell she is an incredibly good and knowledgeable OB and Doctor and it just makes us so much more confident in the care we are receiving. She can then switch gears and we are talking about other stuff like we would at happy hour kicking back and relaxing and having a great time. That's the best way I can explain it. I am going to owe all of our Doctor's and Nurse's a few rounds when this is all over so that's a good thing. She is just a really neat lady and we appreciate her so much.

The pelvic pain Stef has been having is totally normal and expected since she is measuring 33 weeks when we are actually 26 weeks. This is normal though with twins, just very uncomfortable. As long as we can plan the c-section and all goes as planned, Dr. Trylovich will definitely be there to assist in the delivery of the girls which really made our day.

We ended the appointment with talking about tomorrow which is a really big day for us at Children's in Dallas. I think we are both a bit anxious about it. Since we have a pretty solid understanding of what's going on I don't think we are anxious about the meeting with the team, but the facility itself. We may be pleasantly surprised so we are trying to stay as optimistic as possible.

There is a very nice family that will have a big day tomorrow and we would like to ask everyone to send positive thoughts and prayers their way. Kristi and Craig will deliver their baby Kaden tomorrow morning and Kaden's fight will begin. They are a sweet family who have meant so much to us during these past few months. They all need our support tomorrow and in the days that follow. You can follow their story by clicking on the blog link on the right of our page titled "Our CDH Journey with Baby Kaden".

That's all for now. We'll post after our appointment tomorrow.

Take care,
Shawn

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Latest OB Appointment

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

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