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