Thursday, August 25, 2011

Directions, Please?

OK, so I'm going to try and recap some highlights from appointments that Rose has had over the last few days. But let me forewarn you: What follows might be a little scattershot.

So, Rose had an appointment at her regular OB/GYN practice on Tuesday of this week, but nothing particularly noteworthy came out of that visit; everything the OB checked was OK.

Yesterday (i.e. Wednesday), Rose had an appointment with the perinatologist. A few things came out of this visit:

  • Rose's amniotic fluid levels are down a little bit. That's good news! While we don't want to get overly excited about this change, Rose's levels went from 20 cm to 18 cm, which suggests that Jude might be swallowing some fluid after all. We're praying that Rose's levels will continue to remain as close to normal as possible.
  • An ultrasound of Rose's cervix revealed no signs of preterm labor. CDH babies can be born early sometimes, and, as mentioned before, high amniotic fluid levels can trigger preterm labor, which is something we don't want.
  • Although Jude was poorly positioned to get good pictures during his first 3 ultrasounds, the ultrasound tech was finally able to get some good pictures of his heart yesterday. And, interestingly enough, neither the ultrasound tech or the doctor could see evidence of a ventricular septal defect. We're pleased to hear this, but we're also taking it with a grain of salt. Thus far, the ultrasounds have oscillated between showing that Jude has a VSD on the one hand, and suggesting that he doesn't have one on the other. We're pleased to hear this latest bit of news, but we're hoping that subsequent ultrasounds confirm it rather than overturn it.
  • Bits of Jude's intestines were seen in his chest cavity on the ultrasound, but fortunately it looks like his spleen and liver are still in the abdominal cavity. Our hope is that both the liver and spleen will continue to remain in the belly as he progresses in his development.

Today was interesting.

After a scramble through lunchtime traffic in Greenville, we finally connected with the neonatologist for our consultation. We were 20 minutes late for the appointment after Rose and I got separated (long story) and couldn't figure out where in the world we were supposed to meet Dr. Walker.

To the lady in the blazer who helped us find our way: I don't know who you are or what your job is at the hospital, but thank you. Thank you for leading us through that labyrinth of hallways to our destination. Thank you for taking us through the doors that required access cards we didn't have. Thank you for directing us to steer clear of that little bit of poo that was on the floor in the middle of that waiting area that we passed through. (Yes, there was poo on the floor in one of the waiting areas on the 6th floor. Don't have a clue how it got there. Weird. Yucky.) Thank you, blazer lady. God obviously sent you to help us find our way in a time of need -- and that's no joke.

Finally, after Rose and I separated, reconnected, and navigated the 5th and 6th floors of the hospital with a little bit of help from a friend, we reached Dr. Walker's office. A very nice man, he invited us in and we had a long conversation about Jude, CDH, ECMO, lung hypoplasia, gentle ventilation, and a million other things that I'm still trying to remember and process. I'm not going to try to recount that whole discussion -- it'd be too much info for one post. So, here are a few bullet points to sum up the highlights:

  • It looks like we will not be delivering at GHS. Dr. Walker marshaled some statistics in our discussion that made it pretty clear that another hospital, one that has ECMO, would be best for delivery and neonatal care. Although it hasn't been finalized, we'll probably be going to MUSC in Charleston.
  • Jude's hernia is on the left side of his diaphragm. Its early detection may suggest that it's a little bigger or more severe than it would be if it presented later in his development, but it's better that it's on the left side than on the right. Right-side diaphragmatic hernias are less common and can pose more problems, as we understand it.
  • Apparently, babies that are diagnosed with CDH prior to 24 weeks are statistically much more likely to need ECMO therapy to survive than babies that are diagnosed after 24 weeks or immediately following birth. Jude was diagnosed at 20 weeks.
  • Although Rose might have understood this a little earlier than I did, Dr. Walker clarified something about ECMO for us: It's not something that we necessarily want to use. To be sure, it's awesome that the technology exists. ECMO is like a heart-lung machine that works over an extended period of time to oxygenate a baby's blood when his lungs can't do that sufficiently on their own. The technology kind of blows my mind, to be honest, and it saves babies' lives when they might have died before its advent. But, we're hoping that Jude won't need it, not least because the prognosis becomes a little more dim if ECMO enters the picture. Per some stats Dr. Walker culled from the Congenital Diagphragmatic Hernia Study Group, it looks like roughly 94% of CDH babies who have surgery and don't need ECMO survive; on the other hand, babies who have ECMO and surgical repair show a 50-77% survival rate, depending on the sequencing of surgery and ECMO therapy.
After we talked, Dr. Walker took us on a quick tour of the GHS NICU, which was eye-opening. I'd seen premature babies on TV, but I'd never seen them personally. We saw one preemie who was born at 24 weeks, which was wild. That little guy could have fit in my hand.

Amazingly, there was a CDH baby in the NICU when we came through. A baby girl, encased in a little pod, with a little feeding tube and a ventilator attached to her. She was really precious, but seeing her completely disoriented me. The doctor was talking to us while we were lingering near her, but something was drowning his voice out in my mind. Rose thought I looked a little freaked out , but all I could think about was my hope that the Lord would spare her; that is, that he would sustain her and allow her to live. I thought about her family and what they might be feeling. I don't know what it will be like to see my own child in such a state. It may not be long before I find out.

So, that's the news for now.

If you would, please remember Jude in your prayers. Pray for healthy development in his body, particularly his lungs. Pray for his physicians -- that they would be given wisdom and discernment for the difficult decision-making that may arise when caring for Jude.

Rose and I continue to be thankful for the support and comfort we're receiving from family and friends. Also, to those of you who are reading this and praying to God for His mercy and provision in this situation: Thank you.

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God."
(2 Corinthians 1:3-4)


  1. Brian, thanks so much for the detailed update. It gives me a clear picture of where you guys are and what we can be praying for specifically.

  2. We are praying for Jude and the mutlitude of medical professionals who will be providing care for he and Rose. I know a little about what you may be facing... My nephew was on ECMO in Columbia last year. Seeing him, even as an aunt, was one of the most, if not the most humbling, breaking experiences of my life. The hospital staff and Ronald McDonald House were a true blessing!!! The nurses were absolutely amazing and my in-laws still talks about them. But, more importantly, my nephew will be turning one next month and is a wonderfully healthy little guy :)

  3. Continuing to remember Jude and his family!