"I wish I could tell you everything will be OK..."

Lest the title of this post totally totally mislead you, reader, please know on the front end of this post that Jude is stable and OK, relatively speaking. His condition hasn't really changed since our last post on Sunday: He's still on Vapotherm, but he's at risk for being re-intubated, as he has high levels of carbon dioxide in his blood, per the most recent blood gas analyses. We're hoping that his respiratory status will improve as he recovers from his cold over the next few days.

Despite there being no major changes to Jude's condition at the moment, Rose and I were jostled again yesterday.

Before Jude was born, based on what others had told us about having a child with CDH, we knew that his course of care would likely be complicated and that we as his parents would, in turn, ride something of an emotional roller coaster. But, of course, grasping something like that intellectually never prepares you for the experience of it.

Late yesterday morning, Rose and I sat down in the NICU conference room for daily rounds with the doctors and other staff taking care of him. We were subsequently informed that Dr. Hebra wouldn't be available to meet with us later in the afternoon for the previously planned care conference about Jude, but the attending physician informing us of this didn't know why he wouldn't be able to attend. Before Rose and I really had the opportunity to experience the letdown of this news and before any alternative meeting time could be brokered, Dr. Hebra rounded the corner into the conference room and took a seat at the table. We breathed a sigh of relief and were glad that we would get to have a conference after all, even if it was more of an impromptu one. I won't be able to do justice to all that was said over the next 25 or 30 minutes, but I'll do my best to recap the gist of the discussion.

Dr. Hebra began by quickly recapping Jude's course of care since the beginning. He conceded that because of the severity of Jude's defect (i.e. his hernia and what it caused) and the events that occurred while he was on ECMO (particularly the UVC leak and the resultant sepsis), he thought it was a miracle that he even came off of ECMO. (When a physician, let alone the chief of the pediatric surgery division, uses the word "miracle" when talking about your child, it has a certain impact.)

Then, he spoke briefly about what he discovered in Jude's body when he performed his first hernia repair surgery in January. In short, the surgery was very risky, and Jude could have died during the procedure. The abdominal infection that was rife in Jude's abdomen and chest cavities after his UVC leak left a lasting impact: Jude's insides, particularly his abdomen, were laced with adhesions, or bands of scar tissue. Jude's bowel was so matted and fused together with this scar tissue that Dr. Hebra, when I asked him questions in order to visualize what it looked like, described it as looking similar to a piece of raw meat. Moreover, Jude still had considerable amounts of infection in the peritoneal and pleural spaces of his abdomen and chest, which would later warrant nearly a month of targeted antibiotics to clear up. Despite all of these problems, Dr. Hebra was able to move the abdominal organs in Jude's chest at that time (bowel, part of the liver) back down to his abdomen and tenuously secure a biological AlloDerm patch to Jude's chest wall, thereby closing the hernia.

The AlloDerm patch was specifically chosen and necessary because Jude had still had infection in his body; however, the drawback to that kind of patch/mesh (as opposed to other patches/meshes) is that it is made of a biological material and will eventually break down and be absorbed into the body. The hope that we all harbored was that scar tissue would form over the surface of the patch, creating a de facto diaphragm or barrier between the chest and abdominal spaces. We all knew that reherniation, or the recurrence of a hole in Jude's diaphragm at the location of the patch, was likely, particularly with the passage of time. No one, however, was expecting the reherniation to occur so quickly.

Dr. Hebra then reiterated his plan for Jude: He wants to give him good nutrition and delay the surgery for a few weeks. For the moment, of course, Jude's rhinovirus (i.e. his cold) would rule him out as a surgical candidate anyways, unless surgery needed to be done in an emergency. But, beyond recuperating from his cold, Jude needs as much time as he can to grow, get good nutrition (hopefully from breast milk), and optimize his health before undergoing surgery again. Normally, if a child with Jude's condition were to reherniate but tolerate it reasonably well, then a surgeon might be inclined to wait quite some time to surgically repair the hernia. If Jude were such a child, then he might be a year old before his hernia would be repaired again. But, alas, Jude is not that child.

(Everything I've written up to this point is information that Rose and I already knew, even though my explanation of Dr. Hebra's logic for delaying surgery in the paragraph above is a gross oversimplification, at best. I'm going to try, in what follows, to sum up the rest of the conversation, although the impact of what was said probably skewed my perception of things a bit.)

It was at this point in the conversation that Dr. Hebra became a bit more sober in his expression. After concluding his recap of Jude's case and the plan for his care, he then went on to speak briefly about his prognosis.

When Dr. Hebra attempts the second hernia repair, he will probably enter through the chest alone instead of through both the chest and abdomen, as he did the first time. He expects there to be so much scar tissue in the abdomen that it would be difficult or problematic to try and gain access from that point. Entering solely through the chest, though, will pose a technical challenge from a surgical standpoint. Moreover, when he opens up the chest, he expects to find adhesions between Jude's various organs, including the lungs. It will be necessary to cut through the adhesions in order to move organs back into their proper place and then patch the hernia again. Unfortunately, cutting through scar tissue puts Jude at notable risk for bleeding, just like in the first surgery. Assuming that surgery is successful, Jude will suffer a big respiratory setback and will need time to recover. He'll be reintubated for the surgery, then he'll need to be weaned off the the respiratory support while he recovers in intensive care. His pain will be managed through medications, just like before, and he'll then need to be weaned off any narcotics or other drugs being used.

Dr. Hebra conceded, then, that he's worried about our little boy. Jude is far from a straightforward case of CDH repair, and the unique nature of his problems and the challenges that they pose have apparently prompted Dr. Hebra to discuss the case among his colleagues a number of times since he returned from vacation a week ago. There are those cases where he can offer honest encouragement of a good outcome -- our baby boy just isn't one of those. He leveled with us: "I wish I could tell you everything will be OK, but I just can't do that." Beyond doing all that he and the other medical staff could do, he said he'll be keeping his fingers crossed and continuing to pray for Jude.

I think it's fair to say that Rose and I were distressed and disoriented by all of this. We dared to hope that the time had passed when we had to say "if Jude comes home," and that we could now say, with some measure of assurance, "when Jude comes home." To go from if, to when, and now back to if is a hard pill to swallow. It felt the like the roller coaster had crested and was plunging down, yet again.

Please continue to pray for Jude's healing. Thank you all.

CDH Awareness Day and new prayers for Jude

Hi friends,

Rose here.

Spent most of my day with my little man, Jude. Thankful for his snuggles and glad that he took a long nap in my arms.

Sadly, Jude had a rough morning. He had an episode and was struggling with his breathing. His episode was bad enough to get the attention of the doctors and Jude was placed back on Vapotherm. Apparently, there was quite a lot of consideration about reintubating him as well. This greatly worries us and we were very upset to hear that his little lungs are struggling again. It is generally thought that his struggles are related to Jude's reherniation but there could be more problems too.

Right now the plan is to keep a very close eye on Jude and how he is breathing. Today, the docs decided to allow Jude to rest and recover from his tough morning. The hope is that Jude will settle in to being on Vapotherm and that he can remain comfortable there. But Jude is also on the higher end of the settings that Vapotherm and if he cannot stabilize on it then they may consider reintubating Jude. We really don't want Jude to be back on the ventilator. It breaks our heart that this is even having to be considered. Please pray specifically for Jude's respiratory status. I honestly don't have the words to express how sad we are when we know that he is struggling.Jude is not himself anymore. He isn't smiling very much anymore and he is mostly fussy when awake. We are trusting the Lord for each day. Every day I pray that the Lord will give each of us exactly what we need for each day. Will you join me in praying for this?

We will be having a meeting on Monday with the surgeons, neonatologists, nurses and other specialist to discuss the plans for Jude's care. We are thankful to have everyone at the table together to talk about what will be best for Jude. Will you join us in praying in advance for this meeting? Please pray for wisdom for everyone involved.

Today is CDH awareness day and this evening I saw the picture below on a fellow CDH mom's facebook. I thought it was a great way to explain how CDH impacts the sweet babies that it plagues. I hate CDH. I wish that we could find out what causes it. I wish that we could find out how to treat it.

I am thankful that one day our Lord will return and make everything WHOLE. No more sin. No more death. No more illness. No more CDH! HE will make all things new and HE will be glorified!

Lastly, a friend of mine gave birth to her sweet daughter today. Her daughter also has CDH. Please join me in praying for her daughter and for their family as they care for her. Pray for strong lungs and a strong heart! Please pray that the Lord will give the family exactly what they need each day.

P.S. I apologize if this blog post seems jumbled and difficult to understand. My mind is weary today. (As usual!)

Hear my cry, O God,
listen to my prayer;
from the end of the earth I call to you
when my heart is faint.
Lead me to the rock
that is higher than I,
for you have been my refuge,
a strong tower against the enemy.
(Psalm 61:1-3 ESV)