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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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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