Last night was a scary one for all of us, and yet God may have very well worked in an amazing but indirect way
Around 3:15 am, the phone rang. Leaving Jude in the evening and trusting that he'll persevere through each night is difficult, and Rose and I have been afraid that eventually we would get a phone call in the middle of the night informing us that there's a problem. So, when the phone rang, Rose passed it to me as I attempted to rouse myself, saying that it was the hospital and that she wanted me to take the call. I took a deep breath and answered. The woman on the other end identified herself as a surgeon, and she proceeded to explain that Jude's abdomen had become so swollen that the NICU staff were unable to perfuse him (i.e. keep him on ECMO) and that emergency surgery was necessary.
Apparently, after Rose and I left the NICU yesterday evening, Jude's abdominal swelling, which had visibly presented yesterday around the time his ECMO circuit was changed or shortly thereafter, had gotten worse. An abdominal ultrasound that was done yesterday afternoon before we left had revealed that there was fluid in his abdomen, but at the time that we left, the kind of fluid that was present there had not yet been determined. Jude's nurse talked to us a little about the fluid before we left, and since his bilateral pleural effusion was noted during his echocardiogram yesterday morning and/or chest x-rays taken around the same time, we wondered whether there was a connection between the pleural effusion and this accumulation of fluid in his abdomen. After talking with the nurse, Rose and I left with the impression that, while the cause of the fluid buildup wasn't yet certain, one possibility was chylous ascites, a buildup of chyle (a lymphatic fluid) in the peritoneal cavity. Needless to say, we didn't know what kind of fluid it was, but leaving with certain unanswered questions appears to generally come with the territory when you have a CDH baby in the NICU.
So, on the phone with the surgeon early this morning, I learned that Jude's abdomen had become so swollen with fluid that the ECMO pump continued to "cut out" (i.e. briefly stop circulating blood through Jude's body) to the point that the medical staff couldn't keep it operating. Taking into account the other consequences of the fluid buildup and the resulting pressure on Jude's various organs and abdominal vasculature, the medical staff recognized the situation as emergent, and so Rose and I were called for consent to perform the necessary surgery to relieve the pressure and get some of the fluid out. The surgeon or the neonatologist I talked to moments later -- I can't remember which one -- mentioned that Jude might not survive the surgery. There wasn't any time for me to ask a lot of follow-up questions, not least because I was groggy and was just trying to process this latest turn of events, so I readily consented to the medical staff over the phone. After hanging up, we quickly dressed and set out for the hospital.
When we reached the hospital around 4 am, Rose and I noticed that the normal entrance to the NICU had been blocked off with signage indicating that a procedure was underway and directing visitors to request access at the staff entrance. A few moments after buzzing the unit secretary to let her know that Rose and I would be in the waiting room, one of the pediatric surgeons came out to talk with us in the waiting room. En route to the hospital, even as Rose and I had prayed fervently for God to preserve Jude and carry him through surgery, we were trying to reconcile ourselves to the possibility that we might have had to say goodbye today; however, as the ped surgeon entered the room, he didn't have a grave disposition, which was encouraging. As he sat down, he indicated that he was the one who had performed the surgery and that he had been surprised by what he found.
After making a small incision rather high on Jude's abdomen and inserting a small piece of tubing (which, on the outside of his body, reminds me of a tracheal tube, but protrudes a little further from the body), generous amounts of fluid started pouring out. The fluid was, I believe, a milky color that struck the surgeon as odd, as he said that very few fluids found in the body have such an appearance. He then spotted a substance nearby that looked similar: Jude's total parenteral nutrition (TPN) bag, which is essentially his "food" that's administered intravenously since he can't be given breast milk or any other actual food for digestion yet. A quick test of the fluid at bedside more or less confirmed the surgeon's suspicion: Somehow, Jude's nutritional fluids had leaked into his peritoneal cavity in his abdomen. As the fluid continued to drain from Jude's belly, the staff were amazed at how much came out -- approximately 500 milliliters, or around half of a liter.
As Rose and I were hearing the surgeon tell us this, I think our initial response was a mixture of utter relief, alarm, and weirdish fascination: How in the world did Jude's nutritional fluid end up in his abdomen instead of his bloodstream?
Jude had several catheters inserted in the blood vessels of his umbilical cord right after he was born. One of these -- I believe it's called his umbilical venous catheter (UVC) -- has been used to deliver Jude's IV nutrition since he can't eat or digest food yet. (We've been told that he won't be given a feeding tube and prompted to actually digest food in his gastrointestinal system until after the surgical repair for his diaphragmatic hernia, in which his bowel will be moved from his chest back to his abdominal cavity.) If my recollection is correct, per one of the neonatology fellows, umbilical catheters are useful when caring for newborn babies, but staff don't like to leave them in for very long periods of time (presumably because of some risks associated with doing so), so they're eventually removed after 10 days or so; however, with some babies, and perhaps ECMO babies in particular, UVCs might be kept in longer. In Jude's case, the tip of his UVC appears to have pushed through the vein in which it was inserted, which resulted in his nutrition being deposited into his peritoneal cavity (i.e a small space between the abdominal cavity and the abdominal wall).
Interestingly enough, after talking briefly with the pediatric surgeon and the attending neonatologist who was working last night, it sounded like there had been no red flags that had alerted the medical staff in advance that Jude's IV nutrition was being deposited in his abdomen rather than his bloodstream: His vital signs over the past few days were steady enough, and there apparently wasn't a lack of nutritional content or sugar in his blood that led them to believe he wasn't getting his TPN. Although the problem with Jude's UVC and the resultant ascites in his abdomen isn't unprecedented, it sounds like it's a pretty uncommon occurrence.
After a little bit of time elapsed, Rose and I were cleared to go into the NICU to see Jude. While the poor little guy didn't look great with stitches and a small tube protruding from his chest, his oxygen saturation looked great on the monitor, and his lungs had volume! When Rose and I left yesterday evening, Jude's lungs were completely whited out on his x-ray (i.e. his lungs weren't inflated), and his lung volume was very, very low. We were told that this wasn't a surprise after the ECMO circuit change, as the "whiting out" of the lungs can be one of the consequences of the body's immune response to being on a new ECMO circuit. (When a baby is put on ECMO, its body thinks that the tubing of the circuit is a foreign substance or an invader, so the immune system goes on the defense, releasing chemicals that ultimately can effect a number of discernable responses in the body, one of which is apparently the "whiting out" of the lungs.) In any case, Rose and I were encouraged to see that Jude's body appeared to have rebounded reasonably well after the fluid was drained from his abdomen.
Shortly after seeing Jude's vital signs and a few facial indicators that he was OK, Rose and I got the chance to see his chest x-ray, which was taken before we came into the NICU but after the fluid was drained from his abdomen. It looked really good! We could clearly see both lungs, and the bowel appeared to still be decompressed. He had some atelectasis (lung collapse) on the upper part of his left lung, but we're hoping that lung conditioning and other measures will enable that part to open up and inflate soon.
There was yet another surprise: The fellow that talked to us this morning hypothesized (and later confirmed with radiology) that Jude's bilateral pleural effusion is virtually gone! Rose and I had the sense that Jude's doctors were bothered by the resurgence of his pleural effusion in the last day or two and that it may have confounded them a little bit, but apparently the fluid from the TPN that was in the peritoneal cavity had leaked into his pleural space around his lungs. Jude's anatomy isn't normal, of course, because he has a hole in his diaphragm or is missing quite a bit of it on his left side. One of the consequences of this defect, in addition to the movement of abdominal organs to the chest, is that Jude's chest and abdominal spaces (e.g. his pleural and peritoneal spaces) aren't compartmentalized like those of a normal baby; that is to say, fluid that gets into certain spaces of the chest can move freely into certain areas of the abdomen, and vice versa.
As draining as the last 36 hours have been, Rose and I are praising God for how He has worked through this situation and preserved Jude, even when things appeared very dire. It's amazing how saving Jude from a life-threatening situation this morning not only resolved that situation, but it also addressed another concern that was at the fore of our minds. Things remain very tenuous, and the doctor we saw this morning was careful to remind us of how no one can foresee how Jude will do once he comes off ECMO and receives his surgical repair, but we are so thankful that the Lord carried our little man through these latest trials.
For now, Jude remains on ECMO today, as he will need time to recover from the trauma that he's been subjected to in the last 36 hours. Another trial off of ECMO may be in the offing, but it's not yet certain when that will be. We'll share more information about the plan for the next few days as we learn more.
Jude's little body continues to take such a beating, and it breaks our hearts, but we know that God is ever-present and at work among and in the doctors, nurses, and technology. Rose and I often feel blinkered and trapped in very linear modes of thought about how we would like Jude's course of treatment to proceed and what we would like his responses to be, but we know and have seen that the Lord's ways are not ours, and his timeline is not our timeline. Entrusting ourselves to Him and His will doesn't come naturally for us, so we need His grace even to trust Him. Thank God that, in His mercy, it is He works in us "to will and to work for his good pleasure. (Phil 2:13)
Rose and I had the pleasure of having a meal with friends from our church a few nights ago, and one of them said something very interesting to Rose, which has stuck with her (and with me) since then. She said that if you stop and consider things in nature -- things that God has made, not artificial things that man makes -- nothing has straight lines. We like efficiency, straight edges, right angles, full apprehension, easy explanations. Crooked paths, knowing things only in part, waiting -- these things feel like suffering. My natural response to all of these things is to give up, to despair, to be impatient, to take out my frustrations on the people closest to me. Thank God that, in His loving mercy, He took on ultimate suffering -- the only kind that can truly destroy someone -- so that we might endure crooked paths and all that they
Please join us in thanking God for preserving Jude and bringing him through last night's surgery. We pray that He would continue his healing work in Jude's body, and that He would continue to sustain the medical staff and supply them the wisdom and means necessary to provide the best care possible.
As always, thank you for your love, your concern, and your prayers.
Consider the work of God: who can make straight what he has made crooked? In the day of prosperity be joyful, and in the day of adversity consider: God has made the one as well as the other, so that man may not find out anything that will be after him.
Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.
If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him.
For you know the grace of our Lord Jesus Christ, that though he was rich, yet for your sake he became poor, so that you by his poverty might become rich.
(2 Corinthians 8:9)