Houston Appointments

>> Friday, March 20, 2009

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!!
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!

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


Craig and Kristi Kuehl March 20, 2009 at 9:49 PM  

Sounds alot like my first day of "test" at UCSF...we ran late for everything, and no time for lunch.. Not good when you are pregnant! But, it sounds like you guys got some great numbers to work with! You are sooo right that each CDH baby is different--cannot compare "numbers to numbers", but I have come to the conclusion that the doctors tend to err on the side of caution when giving us survival percentages. Don't doubt for a minute that Kamryn will do amazingly well. She is getting all of Stef's positive vibes, and that makes for good baby baking :) You guys continue to be in my prayers and keep us posted...

Terri March 21, 2009 at 7:30 AM  

Hey guys try not to let the "Statistics" get to you. The thing I hated hearing was "That all babies are different." but it is so true. Be as positive as you can and enjoy every single moment you have with them be inside or outside the womb. Praying for you all. I know the stress and strain this diagnosis puts on the entire family. Remember God has you all in His hands!

~Terri and Ava

Tracy Meats March 21, 2009 at 11:18 AM  

(((HUGS))) Shawn and Stephanie. It sounds like you had a very busy day and an exhausting day for Stephanie. Do try to not worry about the numbers and indicators, for the real test will be when Kamryn arrives and how she handles the medical intervention. You may say, but you didn't know about your son's CDH and how can you say numbers and indicators don't matter, but they really don't in a sense. Kamryn will let you know after she is born what will happen. My son diagnosed after birth was given a 5% chance of surving the night without ECMO, for doctors could not belive my son's CDH was missed. I guess I am trying to say, believe in miracles and have hope that Kamryn will survive and she will do amazing things. Hoping your appt. on the 3rd in Dallas will give you the final information you need to make the best decision on where to have the girls and Kamryn's care. Try to enjoy every moment with each other and God is watching over your family. Praying for you Shawn, Stephanie and Hollie and extra prayers for the two precious girls growing and getting stronger everyday. Sending you much love and positive thoughts for the weeks to come.

Hugs, Tracy

Jaime's World March 21, 2009 at 12:26 PM  

I'm sorry your visit was so hard!
Tom and I both know what that's like. Take what each doctor says with the grain of salt. That's what we're learning to do-as no one really knows how these little ones are going to do until they're here!
Get some rest this weekend, April 3rd will be here before you know it. Your hearts will put you in the right direction that will be best for all of you.
Hang in there,
Thinking of you,

Elizabeth March 21, 2009 at 2:10 PM  

Statistics can also be skewed too. And as you have acknowledged we don't know until they are here. Prepare yourself for ECMO and a long stay so if not - it is a pleasant surprise! Good doctors will tell you this is what these stats indicate but we truly don't know. There are too many things that can happen.

One thing I do know - thoughts, prayers and Lung Function chants help!

Selmada March 22, 2009 at 11:19 PM  

Sorry the day itself was so messed up in the schedule. But you got through it and have some more answers (and more questions)

Statistics are just that, statistics. Kamryn is a little baby. You are doing everything for her. I hope for all the best.

Liz and Shane March 23, 2009 at 6:52 PM  

I remember when I would go to UCSF for my appts. and it would be all day. They were always running late for everything too. Bring snacks.
Don't let the number ratio get you down. We were told that Nayeli had a 30% survival rate because her liver was up. She had a laproscopic surgery, didnt need a patch and her liver was down. Stay positive and strong.

Anonymous March 25, 2009 at 9:58 PM  

Wow, that was one busy day, not easy! I remember I had a day like that too at Columbia--sono, fetal MRI, peri consult with no time for a break or even a snack. I am hoping that your little fighter will surpass any and all expectations set forth for her. Hang in there!

Lotusflower (IVFC)

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