Maternal Fetal Medicine Appointment

We had our appointment today with Dr. Zaretsky and it went really well. I think we both would be losing our mind at this point without Dr. Z, Leah, and Sharon. Leah is so good to us when she is doing the sonogram and just has amazing patience with all the questions we ask her. After visiting Houston, we realize we are once again blessed with our local healthcare professionals.

The appointment was pretty uneventful (we like that!). The twins weigh 1.15 (Brooke) and 1.11 (Kamryn) which is actually on par with a singleton pregnancy. This correlation will likely diminish a bit once we get to 28 weeks and then we should see them fall off that curve a bit. Based on the measurements, there is a 14% gap between their growth which is totally normal and we are right on track.

Amniotic fluid is measuring around 6 to 7. I forget what the measurement is of 6 to 7, but we know it is within normal limits as long as it is below 8. Heartrates were 134 (Kamryn) and 138 (Brooke). We were a little concerned about the 134 with Kamryn, but soon found out that is within normal range so all is well there.

We talked with Dr. Z about liver position and if a % of liver being up would be a predictor of needing ECMO (Heart/Lung bypass machine) and mortality. My feeling is that it had too be and while Kamryn's liver is up, 15% didn't seem that much. We talked about a number of studies that have recently come out and one specifically that indicated a much better prognosis if less than 20% of the liver was in the chest cavity. Another study talked about a very promising predictor of outcome being Predicted Percentage of Lung Volume using MRI measurements. I think they are a fantastic resource for CDH families and will give them a framework to ask questions. One of the most frustrating aspects of this condition is the difficulty that the healthcare community has in predicting mortality and morbidity in these babies. For every article I find that talks about Lung to Head Ratio being a good predictor there is another article or study that shows it isn't in their pool of babies. As all of you can relate, when you or a family member finds out about a condition you just want to know what the outcome is or what to expect. In the beginning of this journey I would get so frustrated because I felt Doctor's weren't giving us the truth about the prognosis. After many months and a lot of research, we finally understand that they simply don't know and I can tell just how frustrated they are that there are no solid predictors. They honestly won't know until Kamryn is born. These newer studies I talked about show there may be some promising new indicators out there. I have posted the three studies at the top of the page under resources.

I think I am rambling again........sorry. Stephanie turned to me the other day and with all the confidence in the world said, "Kamryn is going to make it." I believe she will also and I can't wait to tell her somewhere down the road when she is older that she sure scared the heck out of mommy and daddy. We are looking forward to that day.

Friday April 3rd is our next big day when we get to meet with the Doctors at Children's here in Dallas. We are really looking forward to it and getting our plan together for delivery.

Thanks to all of you who give us support each day and keep us grounded. We would be lost without you all!

Shawn and Stephanie

P.S. Kamryn says "hi" to everyone in the picture below.

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Sweet Angel Baby Maxton

We just learned today that another CDH baby has passed from this horrible and evil birth defect. Baby Maxton was with us for 18 days, and put up such a strong battle. He and his parents, Ashley and David, have been so strong throughout this entire journey. Maxton held on for as long as he could. Shawn and I are confident in knowing that he is with God now and will forever be an angel to us all. Maxton's blog address is http://babymaxton310.blogspot.com/. Please pray that Ashley and David are able to find peace and understanding through all of this.

Love,
Shawn and Stephanie

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Houston Appointments

That was a long day!! Overall, we aren't sure that we are all that impressed with what we found and literally feel a little deflated. Honestly, what we found out today is pretty good news with all things considered. It's just not great news and it's hard to keep yourself from holding out hope for that amazing news. Here's how the day went:

7:50am - Started the ultrasound and the technician was just not what we hoped for. We have been spoiled in Dallas with very personable and compassionate people doing our ultrasounds. It was 2 hours of almost no communication as the procedure was conducted. It was 10:00 and we were still doing the ultrasound and hadn't met with the doctor. We became a little nervous because our MRI was scheduled to start at 10:00. We finished up around 10:15 and met with the Doctor for about 5 minutes where he told us everything looked fine except the CDH and he couldn't tell if the liver was up or down. We rushed to get to the MRI.

10:30am - We showed up for the MRI and checked in. Around 11:15 they came out to tell us the MRI machine we were scheduled for was down and someone was working on it. They were trying to re-schedule us. We explained we needed to investigate plan B since we traveled in and around 11:30 we started the MRI which "would take about 30-40 minutes". Half way through the MRI they came in to tell Stef that they needed to start over. The band they were using around her stomach was too small and wouldn't cover both babies. They changed the band and after being in the MRI machine for an hour and a half, it was finally over. Unfortunately, it was now 1:00 and that's when we were supposed to meet with Neonatology. It was just one mess after another. No time for lunch so we shot over to pickup the copies of the MRI and then to the next doctor appt.

1:30pm - We met with the Neonatology doctor who didn't have our MRI results and had briefly reviewed our chart. We didn't talk about our specific situation, just general CDH procedures. Unfortunately, the meeting was choppy as the doctor stepped out to take calls on 3 different occasions during our meeting and then a fourth interruption to move us to another conference room. We just didn't get much out of that appointment so we wrapped it up knowing we were supposed to be over at the NICU at 2:00 for that tour and it was already 2:15.

2:30pm - Toured the L&D area and NICU. This really was the highlight of the trip. It was difficult seeing all of those babies in the Level III NICU, but the facility was incredible. They have 1:1 baby to nurse ratios and you could tell it was run very well. The Labor and Delivery area was literally right next door so transport would be no problem at all. 3:00pm - We grabbed some lunch and had a chance to talk about the day before our last appointment at 4:00.

4:00pm - We showed up to see the pediatric surgeon and were seen around 4:30. He had reviewed our results from the day and discussed CDH in general with us before getting to our specific situation. It was obvious that he had quite a bit of experience handling these types of cases which was reassuring. Here's what we found out:

Brooke is still doing fantastic!!
Kamryn:
LHR (lung head ratio) is 1.4 (less than 1.0 = severe, 1.0-1.4 = moderate, greater than 1.4 = best case scenario)
Liver up (estimated 15% of liver up) - this was a bit of a blow
80% chance of survival
50% chance she will need ECMO
Estimate 6-8 weeks in NICU (this was purely a guess and I pushed him to give us his gut feeling)
Unable to estimate % of diaphragm missing or undeveloped, but believes we will need a patch for repair
Imaging Doctor didn't have time to calculate volumes so they will send to us soon

I had somewhat convinced myself that with her LHR at or above 1.4 and most of the liver down, survival would be approaching 95-100%. I definitely convinced myself that ECMO was a remote possibility. In his opinion, it is more severe than what I had talked myself into and it was a little deflating.

It's frustrating as I once again have to remind myself that at the end of the day, it's really anyone's guess as to what will actually happen. Babies with indicators much better than this still struggle significantly while babies with far worse indicators come through remarkably well. We simply won't know the severity of the situation until they are born no matter how many tests are conducted or what numbers they give us.

What we do need is to feel like we are making the best decision for Kamryn and Brooke with regards to where we deliver and we could only do that by comparing facilities and Doctors. With our Dallas appointment coming up on April 3rd, we will be able to make that comparison and feel good about our decision.

I continue to be amazed with how strong Stef is. She was such a trooper today through all the tests while I knew just how uncomfortable she really was. She's been through so much and somehow gets up everyday with her gameface on and is ready to tackle anything thrown her way. I'm proud of you Stef and thankful to have you by my side through this journey. You really are amazing and I love you so very much!

We are both exhausted and ready for some sleep before the drive back home tomorrow. Talk to you all soon!

Shawn
“I delight to do your will, O my God; your law is within my heart.” – Psalm 40:8

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Arrived in Houston

Well, we made it to Houston! I have to say, it wasn't a bad drive at all. It went by pretty fast, and we only stopped twice. Once we got into town, we stopped at one of my closest friend's house, Jackie to say hello. She looks great, and I can't wait to spend more time with her when she comes in for my shower. Then we continued our drive into Friendswood. The traffic was horrible, and by that time, I was ready to be at our destination (Shawn's Aunt Judy and Uncle Bob's). When we got in, Shawn and Uncle Bob went to play golf, and Aunt Judy, Hollie and I stayed behind. Judy and Hollie gave their dog Shadow a bath and then played outside, while I got to rest and watch TV. I tried so hard to take a nap, but both of the babies were kicking so much, I wasn't able to sleep. Last night, they fed us an outstanding meal of tamales, homemade beans, with homemade salsa (2 different kinds) and homemade Pico. Oh, it was so good. I think Bob and Judy were in shock at how much I could eat and not get heartburn. That's definitely a similarity I've had in both pregnancies. No Heartburn! Thank goodness!!! Anyway, I just woke up, and we are about to go downstairs to eat breakfast, and get ready to go to the Space Station.

Shawn and I are extremely anxious, but excited about tomorrow. It's going to be a long day, but I'm ready to have that MRI, so that I know where the liver is, and it would be nice to know if they could tell us how bad the hernia is in her diaphragm. But, even with that, we still won't know the severity of it all, until she's born.

Well, orange juice is calling my name, so I'm going to close for now. Just wanted to let everyone know that we made it to Houston okay.

Love,
Stephanie

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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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Appointment Update

We had a terrific appointment today and it was full of good news! Both Kamryn and Brooke are measuring great and are actually the size they should be if this was a singleton pregnancy. We are at 22 weeks 1 day and they are right on target for growth. Amniotic fluid levels were completely within range which is important so that Stef doesn't go into labor early.

It still looks like the liver is not involved and it's just the stomach and intestines that have herniated into the chest. We could see the diaphragm so we are certain that there is at least some present. This will make fixing the hernia easier and we hope there is sufficient diaphragm there to close the hole without having to use a patch. Based on everything I have read, using the patch works but there is an increased chance that it will re-herniate afterwards which requires another surgery to repair.

The most exciting news was the Lung Head Ratio (LHR). Kamryn measured 1.9 today. This has increased from the first measurement taken on Feb 12th which was 1.3. This is just one of the many indicators of prognosis and there is plenty of debate about how much you should rely on this number. With CDH, a LHR under 1.0 is considered severe, 1.0 - 1.4 is considered moderate, and over 1.4 is considered good. We think a 1.9 is fantastic!!

We head to Houston Children's for tests and consults on March 20th and then to Dallas Children's on April 3rd. We should know a lot more after these visits.

With all this great news came frustration later in the day. We found out the name of the pediatric surgeon we will meet with on April 3rd in Dallas. We also got our schedule which shows us meeting with this surgeon before we have our MRI test done. I immediately started my research on this doctor and wasn't very comfortable with what I found. I then emailed our high risk OB about my concerns and the fact that I wasn't sure how the surgeon could do a comprehensive and accurate consultation without having the MRI results. Just didn't pass the smell test for me. The response I got back was that I should reach out to the chief doctor at Children's about my concerns/questions and that we will have a group discussion after April 3rd about the gameplan for care. We will see how that goes and where we go from there. Not having that comfort level just frustrates me.

That's where we stand at this point and things are still looking as good as we could hope given the situation. Thanks to all of you for continuing the pray for our little girl!

Shawn

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