Year's End

Today, while I assume that the rest of world watched college football, prepared for New Year's Eve festivities, or otherwise wrapped up 2011, Jude was partying in the NICU, celebrating his decannulation from ECMO last night. :)

This morning when Rose and I arrived at the hospital, Jude was wide awake and looking around. Apparently, he had been that way since his nurse for the day shift had arrived around 7 am. As the morning wore on, Jude continued to be alert, and he was moving around a little bit more than usual. The medical staff have given him Ativan several times in the last day or two to help him chill out when needed, and his morphine and Versed (used as a sedative) have been increased a little bit in accordance with his weight change, I think. And yet, despite having been increasingly doped up on such meds, the little man was still awake throughout the morning. This crazy kid doesn't want to sleep, just like his sister! Eventually, this afternoon the right amount of drugs was administered to help him rest, and he snoozed for a while.

The big news today is that the medical staff continued to successfully ventilate Jude with an oscillatory ventilator: He seemed comfortable, his blood gases were awesome, and his chest x-ray may have been the best one that we've seen. The oscillator, as his current ventilator is called, maintains a higher baseline pressure, which keeps Jude's lungs and the alveoli (air sacs in the lungs) open more consistently than a conventional ventilator. While the lungs are open, the oscillator delivers very small rapid breaths, which are almost akin to vibrations (as opposed to the more forceful breaths provided by the conventional vent). It can be a little distressing to see a baby like Jude on a high frequency ventilator like the oscillator -- his entire torso vibrates in accordance with the approximately 600 mini-breaths that he's getting per minute -- but it's scratching him right where he's been itching. At this juncture, this kind of ventilator can support Jude more adequately without risking injury to his lungs. As Jude progresses in the coming days, the hope is to slowly wean him off of the oscillator, i.e. turn down its settings, and then eventually move Jude back to a conventional vent.

As yet, Jude's surgical repair hasn't been scheduled, so we don't have a definitive date or time for when that will happen. At the moment, Jude's doctor wants to keep him stable on the oscillator and begin to conservatively wean him. To wean him too vigorously could cause his lungs to collapse, but his doctor doesn't want to wean him too slowly either, as that would merely prolong the interim period before surgery and possibly increase risk of ventilator-induced lung injury. Once Jude can tolerate settings on the oscillator that are a little bit lower, then his doctor can consider moving him to a conventional vent. Jude's surgeon prefers that he be on the conventional vent when he performs his surgery, as there are surgical advantages to being on that one instead of the oscillator. Moreover, if Jude is on the conventional vent for surgery, then he would have latitude to move back up to the oscillator for additional support after surgery if that's needed.

Jude continued to have sufficient urine output today. This confirms that his kidneys are still working, and it should allow him to relieve himself of some excess fluid through diuresis. He didn't need any Lasix today -- he was urinating on his own, which is exactly what we want to see.

In other news, Rose got to help clean Jude up just a little bit today and even got to give him small amounts of breast milk on a pacifier! (I got to take his temperature under his arm, but with a nurse's close supervision, of course. :) ) He was very cute with his little paci, and Rose was very encouraged, even by this opportunity to do something small for our little one.

Over the next few days, please pray with us that God will continue to work miracles of healing in Jude's body and that He will prepare our little man for his surgical repair. Also, please pray for continued wisdom, skill, and discernment for the medical staff taking care of Jude. We have been blessed with some truly incredible nurses, physicians, respiratory therapists, perfusionists, pharmacists, nutritionists, social workers, and more! It's amazing how many people from various vocations and backgrounds have been instrumental in helping care for our son.

As we begin a new year, we thank God for His faithfulness and mercy that He has shown to us since we learned about Jude's diagnosis, and we look forward to His continued work in our lives and the advancement of His kingdom in the coming year!


    Pray then like this:
    “Our Father in heaven,
    hallowed be your name.
    Your kingdom come,
    your will be done,
        on earth as it is in heaven.
    Give us this day our daily bread,
    and forgive us our debts,
        as we also have forgiven our debtors.
    And lead us not into temptation,
        but deliver us from evil."
   
(Matthew 6:9-13)

Early photos of Jude

 Here are a few pictures that were taken of Jude before his infection and puffiness. He is such a cute little guy!

Picture and Video of Our Little Man :)

Happy New Year! Here is a picture and a video of Jude today as he celebrated New Years Eve. He was quite awake this morning but the batteries on my camera were dead at that point. So enjoy a few moments of sleepy Jude. :)

You will notice that Jude is quite swollen in the picture and video. He was even bigger and puffier earlier this week.
We will do a better update later this evening...but overall Jude had an uneventful and restful day! Look for another post later!

Off ECMO!!

Hi friends,
Just a quick post to let you all know that Jude's decannulation was successful and he is officially off ECMO! Thank you for praying for Jude, the doctors and nurses involved in this procedure.
We are truly thankful for this day! This morning we would have never thought that Jude would be off of ECMO this evening. We are so thankful for the work that the Lord has done in Jude's body today.
Please know that we continue to desire your prayers for Jude.This is an amazing step for our little guy but we also know that he has MANY more steps ahead of him. Please continue to lift him and his little body up in prayer. Thank you for being so faithful to pray for him and our family.

We will update you more when we can about the plan for Jude in the coming days!

Love,
Rose and Brian

Jude Is Coming Off ECMO at 7:30! Please Pray!

Jude passed his trial off of ECMO, so he's being decannulated at 7:30!

Like any surgical procedure, decannulation involves some risks. For Jude, the greatest risk is bleeding since he has been on blood thinners during his run on ECMO. Moreover, since his cannulas are essentially big catheters that extend deeply into his chest near his heart, the surgeons need to be very careful when removing them. In a conversation with the surgeon who's doing the decannulation, I believe he suggested that Jude's vessels might be slightly weakened because the cannulas have been in for so long, so that's another concern.

Despite the risks associated with decannulation (which are small within the whole scheme of things), Rose and I are incredibly thankful that Jude has made it to this juncture. Sadly, there are those babies who go on ECMO and are never sufficiently stable to come off, and our hearts are breaking for those families for who have experienced that. At several points, Rose and I feared that Jude wouldn't come off bypass, so today's events and his imminent decannulation are an answer to all of our prayers.


We thank God that Jude has endured the many obstacles that he's encountered thus far, and we pray that God will continue to protect him and equip him with everything necessary to meet the challenges that will now lay before him.

To all of you who are reading and praying for Jude: Thank you for being faithful to pray for our beloved baby boy. We now humbly ask that you continue to pray him, as he still has what will probably be a very long fight ahead with CDH and its aftermath.

A quick, but significant side note: While Jude was clamped off from the ECMO circuit during his trial off, the attending pediatric cardiologist came upstairs to do his echocardiogram. Before she left, she shared some very exciting news: Jude's cardiac function on both sides of his heart looks great, and she didn't see any real evidence of pulmonary hypertension. That's awesome! We'll undoubtedly get an even better understanding of his heart function and the state of his pulmonary vasculature after he's been off ECMO for a while, but the results of this echo are amazing and so encouraging. Thanks be to God for his amazing and wondrous works!


    Great are the works of the LORD,
        studied by all who delight in them.
    Full of splendor and majesty is his work,
        and his righteousness endures forever.
    He has caused his wondrous works to be remembered;
        the LORD is gracious and merciful.
    He provides food for those who fear him;
        he remembers his covenant forever.
(Psalm 111:2-5)

Update: Clamp Off Trial Is Going Well!

Good news! After about an hour and fifteen minutes of being clamped off from ECMO, Jude is doing very well! His blood gases have been checked 3 times, and everything has looked great every time! Praise God!

The trial off got started around 3:30 pm, which was a little later than anticipated. Since our last post, the attending neonatologist decided that the trial off would last for four hours instead of two, so we should have a good idea of how Jude will weather being on his own sans ECMO after the trial is over. Provided things continue to go well for the remainder of the trial off, Jude will be decannulated later this evening!

We're expecting that an echocardiogram will be done around 5:30 or 6 pm, which will tell us about his ventricular function and whether his pulmonary hypertension has gotten better during his run on ECMO.

Please continue to pray with us that Jude's lungs will be fully recruited and inflated, that his blood gases will remain within acceptable ranges, and that the echocardiogram will reveal good news about his heart function and his pulmonary hypertension. God is good!

Afternoon Update: Clamp Off Trial at 3 PM

Good news: Jude was put on an oscillatory ventilator (i.e. the "oscillator") this morning around 8:15 am, and he has responded very well to it! Praise God!

Since going on the oscillator, the medical staff have been able to turn down Jude's ECMO settings considerably. One exciting thing: The oscillator appears to have greatly helped Jude blow off his carbon dioxide, and his blood gas results have been very encouraging. As yet, the medical staff still don't have an answer for why Jude's pulmonary edema suddenly and unexpectedly worsened within a 2-hour period yesterday evening. Mechanical failure of his CVVH (hemofiltration) unit on the ECMO circuit was ruled out, and, so far, blood cultures testing for infection have come back negative. Hopefully, Jude will continue to improve as the day wears on and the reason for his recent downturn will be moot.

So, what's the plan?

At 3 pm this afternoon, Jude will be clamped off from the ECMO circuit for a trial that will probably last around 2 hours. During that time, he will be completely disconnected from ECMO -- he will be getting his support exclusively from the oscillator. He'll also have an echocardiogram while he's clamped off, which will give us the clearest picture we've had in a long time of his heart function and his pulmonary hypertension.

Based on Jude's performance during this clamp off trial, he could potentially be decannulated later this evening! If he doesn't do particularly well, then he'll remain on ECMO and the medical staff will try to identify what needs to be done help Jude get off bypass.

Jude is also getting a chest x-ray at 3 pm, which will reveal how successful the oscillator and other measures have been in helping to inflate his lungs.

Please pray with us that the trial at 3 pm goes well and that we can move to decannulation tonight! Praise God for Jude's positive response so far today! We'll update you all as we move forward!

Update: Trial Delayed, Unexplained Setback

We received a call from one of the doctors in the NICU this morning as we were preparing to leave for the hospital. Oh, how we hate to see that phone number on the caller ID. We start to tremble, fearing we're on the cusp of receiving more bad news.

The doctor indicated that last night, for some reason she can't explain, Jude started looking puffier. Subsequent imaging and/or tests revealed that his pulmonary edema had suddenly gotten a little worse. Then, his lungs whited out...again.

The doctors responded by getting more aggressive with his hemofiltration, increasing the hourly volume extracted from 15 to 20 cubic centimeters, and by giving Jude Lasix, a diuretic intended to increase his urine output (which it did). His ECMO settings were also increased to give him the support he needed after his lungs whited out. To ensure that some kind of infection wasn't playing a role in these issues, the doctor ordered blood drawn and cultured, and, at the time of this post, the cultures are negative. His antibiotic that he was on, nafcillin, was changed to something else, although I don't know what yet. Presumably whatever he's on is something that staphylococcus aureus, the original bug that caused Jude's sepsis, is sensitive to, but perhaps more broad range than nafcillin.

The plan for this morning is still to put Jude on the oscillator, now with the hope that, among other benefits it can afford us, the consistent level of pressure it offers can help with his edema. The trial off on low ECMO setting, however, will have to wait. Jude's lungs aren't ready for that after last night's setback, and his ECMO settings will need to be weaned a little bit more now before engaging in a trial off. We don't know how long we'll have to wait for that to arrive.

Currently, we're a little distressed by the unexplained nature of this latest setback, and we hurt for our little boy who has been tossed about as he's experienced all of these setbacks. We pray that God would provide answers to questions today, and that he'll enable Jude to bounce back from these latest challenges.

God, we know you're in control, and we love you. But we need your grace, even to help us trust you, because we know we can't even do that on our own and that we're broken and lost without you. We need your mercy in all things, in all areas of our lives, in the deepest fiber of our being. We know you, Lord Jesus, came to make your blessings flow as far as the curse is found, and we pray that would be realized, even today, in ways even beyond our wildest imagination. Please help us, and most of all, help Jude in his hour of great need. But, above all, your kingdom come and your will be done. May you be glorified in all things.

    Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgments and how inscrutable his ways!
    “For who has known the mind of the Lord,
        or who has been his counselor?”
    “Or who has given a gift to him
        that he might be repaid?”
    For from him and through him and to him are all things. To him be glory forever. Amen.
(Romans 11:33-36)

Coming Off ECMO Tomorrow

So, as indicated in our last post from this afternoon, Jude's trial on low ECMO settings was cut short not long after it began because his body demonstrated continued difficulty in removing carbon dioxide from his bloodstream. This was a little disappointing, although it wasn't wholly unexpected. The good news is that despite the results of the low flow trial, Jude is still scheduled for decannulation (i.e. disconnection/removal from the ECMO circuit) tomorrow.

This afternoon, Jude was given his first of six doses of dexamethasone, a steroid that should effect short-term improvement of his lung function, which, in turn, should help him prepare to come off ECMO. He'll receive two doses of the steroid each day for three days, and the size of the dosage will progressively decrease.

Tomorrow morning, Jude will be put on a different type of ventilator that is better suited to meeting his present needs: It's a high frequency ventilator called the oscillator. I won't endeavor to explain all the ins and outs of how this is different from a conventional ventilator right now, but it works a little bit differently and, in a sense, provides a little more support. It should hopefully help Jude get rid of some of his excess carbon dioxide as well.

After Jude is put on the oscillator tomorrow, shortly thereafter he will have another trial on low ECMO settings, although that trial may have a slightly different purpose than the one from this morning, i.e. it should afford the medical staff an opportunity to adjust the settings on the oscillator in response to Jude's "performance" at low ECMO settings. After the second trial tomorrow, the pediatric surgeons will decannulate and Jude will be off ECMO.

Right now, I don't know when Jude will receive his surgical repair. His surgeon came by his bedside today when Rose and I were out of the NICU, so we didn't speak to him personally, but we later learned that he would like to see Jude move down to the conventional ventilator before undergoing surgery, if possible. Being on the conventional ventilator may offer some surgical advantage(s), but it would also allow some latitude to move back up to the oscillator or the jet ventilator (another type of high frequency vent) if that's necessary to support Jude.

Here are a few things we're thankful for today:

• Jude's low flow trial this morning gave the doctors information that they needed to formulate a plan for his care over the next day or two.
• Jude continued to urinate reasonably well today. Hooray for pee! :)
• Rose was feeling well enough to come into the NICU with a mask. So glad that she's back alongside me and able to see our baby boy again.
• Rose and I were able to look into our little boy's eyes today, as he was awake a bit more and seemed rather alert.

In addition to general prayers for God's mercy and daily provision to all involved in Jude's situation, please pray with us about these specific things over the coming days:

• That the oscillator vent will be very effective in stabilizing Jude and getting his carbon dioxide levels in his blood down to a lower level.
• That tomorrow morning's ECMO trial and subsequent decannulation will go as smoothly as possible.
• That the dexamethasone being administered to Jude will easy his inflammation around his belly and significantly improve his lung function.

Thanks for your prayers and patience with me as I cobble together posts about Jude, folks. The Lord has continued to minister healing to Jude in His time, and He has sustained our family in ways that can only be explained by His mercy and grace. Please keep the prayers coming! Good night!

    The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
(Philippians 4:5-7)

Trial Over After One Hour - More Information to Come

Jude's trial on low ECMO settings ended after about an hour and fifteen minutes. He didn't do as well as we had hoped -- he had higher carbon dioxide levels that we would have liked to see; nevertheless, the trial gave the medical staff information that they needed so they could formulate a plan for moving forward. And even though Jude's carbon dioxide level wasn't in the desirable range, he didn't become distressed; on the contrary, he remained calm throughout the trial off, and he even appeared to snooze through most of it.

Despite his less-than-perfect trial today, it sounds like Jude's still on a trajectory to come off ECMO by tomorrow!

I'll post more info about the plan for tomorrow a little later. Until then, please continue to pray for our little man! Many thanks to you all!

TEST UPDATE FROM ROSE

TEXT FROM ROSE:

Trial going well…numbers look goods far.  Three more hours to go!

TRIAL OFF ECMO STARTING NOW - PLEASE PRAY!

Trial Off of ECMO Tomorrow - Please Pray!

Jude had a reasonably good day today and has shown some improvement since his chest tube was inserted yesterday, so tomorrow he'll have a test to determine whether he's ready (or nearly ready) to come off ECMO.

At some point tomorrow during the day shift (7 am - 7 pm), Jude will have a trial run on very low ECMO settings, which will determine whether he's ready to come off bypass, and it may help in determining whether he needs any additional support (e.g. a steroid called dexamethasone, support from a high frequency ventilator) in order to come off successfully.

So here are some things that we are thankful for today:

• Jude has seriously ratcheted up his urine output: He's been peeing in the neighborhood of 3-4 times the amount he was producing just two days ago. It feels a little strange to put urine at the top of the list of things we're thankful for, but it's a good sign! Urination means that his kidneys are doing their job. Moreover, since Jude is swollen with a lot of extra fluid in his body, urinating helps him dump some of the extra fluid that's hindering him from making progress.
• Based on evaluation of two sets of test results, it's very likely that the fluid drained from Jude's chest is not chyle (i.e. lymphatic fluid). This is good news! If Jude had chylothorax, or chyle accumulation in the pleural space around his lungs, then that might signal an underlying problem with his lymphatic system, so we're very happy that doesn't appear to be the case.
• Overall, Jude looked more comfortable today. Yesterday, Jude was grimacing quite a lot and appeared to be in pain. Discomfort and pain is not only extremely difficult for us to witness as parents, but it can also have some negative consequences with respect to his blood pressure and carbon dioxide levels, among other things. Although our little man still has a lot of problems that are likely painful, we're thankful that the medical staff were able to keep him a little more comfortable today.

Here are some things that we would love for you to pray with us about:

• Jude has been on ECMO for a long time now, and it's very important that he comes off as soon as he can. He's now been on bypass for a little more than 3 weeks, and although there are babies who stay on ECMO longer than that, the risk of complications goes up the longer he stays connected to the machine. Please pray that tomorrow's "trial off," as it's called, will go as well as possible and that Jude might demonstrate that he can come off bypass without the use of a high frequency ventilator or other forms of support. Medically speaking, it might be a long shot for him to do well and come off ECMO without the use of dexamethasone, a high frequency ventilator, or some other form of increased support, but nothing is impossible for God, so we pray boldly for Jude to do well.
• In order to be in the best condition possible when/if Jude comes off ECMO, he needs to shed quite a bit of weight and rid his body of excess fluid. For several reasons, he has had edema, which is swelling due to the accumulation of fluid in the body's spaces and tissues outside of his blood vessels. Earlier today, Jude weighed about 5 kilograms (approx 11 lbs), but ideally the medical staff would like to extract enough fluid from his body to bring him down to 4 kilograms (approx 8.8 lbs). As fluid is gradually removed from his blood by hemofiltration through the ECMO circuit, his body compensates for the fluid that is removed from his bloodstream by pulling fluid into the vessels from surrounding tissues. Please pray that Jude will continue to urinate regularly and that the medical staff are successful in extracting excess fluid in a way that doesn't compromise the amount of volume/fluid he has in his blood vessels or his electrolyte balance.
• Jude is swollen not only because he has a lot of fluid on board, but also because he has inflammation, particularly in his abdomen. (His abdominal swelling has been so bad that his belly has been shiny because his skin is so stretched.) Jude's body has been through a lot of trauma between ECMO circuit changes, irritation from the presence of fluid in the peritoneal space of his abdomen, insertion of two tubes in his torso (one in his upper abdomen, one on the right side of his chest), and an infection that spread to his bloodstream (sepsis). His peritonitis (inflammation in the peritoneal space along the abdominal wall), in particular, has resulted in a lot of abdominal swelling, which can also be very painful. Please pray with us that Jude's inflammation and the pain it's causing will subside as much as possible.
• Rose hasn't been feeling well over the last few days; consequently, she only saw Jude briefly yesterday, and she didn't come to the hospital at all today. She went to the doctor this morning, but whatever she has is viral, so there really isn't much that she can do to hasten her recovery beyond drinking lots of fluid and getting rest. She's planning on visiting the NICU tomorrow with a mask, and while we certainly will take any measures necessary to protect Jude and the other NICU babies from germs, it's no fun wearing a mask and not feeling 100%. Please pray that Rose can kick this illness quickly so she can freely visit Jude and touch him. She loves our little baby so much, and she yearns to nurture him, even if it can only consist of holding his hand or touching his head right now.
  

Beyond these specific requests, if you would, please continue to pray for Jude's overall healing as well as for wisdom for all the medical personnel overseeing and providing his care. Jude has been blessed with a team of competent, compassionate health care professionals, and we know that they are instrumental as God is ministering to Jude's needs.

As Rose said in a recent post, we are so very thankful to you all for your prayers, your words of encouragement, your notes and messages, and the other various ways in which you are supporting our family during this difficult time. Even though we may not have the occasion to respond to you all right now, we read all of your messages, and we're greatly encouraged, comforted, and humbled by your loving words and actions.


    Though I walk in the midst of trouble,
        you preserve my life;
    you stretch out your hand against the wrath of my enemies,
        and your right hand delivers me.
    The LORD will fulfill his purpose for me;
        your steadfast love, O LORD, endures forever.
        Do not forsake the work of your hands.
(Psalm 138:7-8)

Three Weeks Old!

Jude is three weeks old today! After the insertion of Jude's chest tube around lunchtime, the rest of his three-week birthday was mostly uneventful.

The fluid that was drained from Jude's pleural space on his right lung was sent the lab to be cultured and to be tested to determine exactly what it is. The doctors weren't certain of the type of fluid after the preliminary lab results came back, so additional testing will be done tomorrow morning so that they can compare the two sets of results and come to a conclusion about exactly what the fluid is. It could be a type that follows an inflammatory response, a residual form of the parenteral nutrition that was drained from his abdomen last week, or chyle (lymphatic fluid). Chyle might suggest a problem with Jude's lymphatic system, so we're hoping and praying that it is something other than that. Please pray with us that Jude doesn't have a serious underlying problem associated with his pleural effusion.

A bit of good news: Jude urinated quite a bit today! While patients are on ECMO, their kidneys may temporarily stop functioning, particularly if hemofiltration or dialysis is done through the ECMO circuit. By urinating quite a bit today, Jude showed that his kidneys are functioning reasonably well, which made his kidney doctors happy. Thank you, God, for this good news!

Jude's lung volume began to slowly increase after the fluid was drained from his pleural space, but it will take some time to more fully inflate and such that it can begin to function well, so we're hoping to see additional progress tomorrow. Please pray with us that his lung volume and function will continue to increase each day.

Unfortunately, Jude seemed pretty uncomfortable this afternoon. He was grimacing quite a bit and making faces like he wanted to cry. It was really sad to see him in that state and know he was in pain, but his nurse gave him several doses of morphine to offer relief. To be sure, there are at least several reasons Jude would be uncomfortable: He had a tube inserted in his chest today and he has peritonitis (i.e inflammation of the peritoneum, the space along the edge of his abdominal cavity), which can result in acute abdominal pain or discomfort. Please pray that Jude's pain will subside and that he can be kept sufficiently comfortable in the coming days.

I think that's all for now, folks. Please continue to pray with us for continued healing in Jude's body and that the medical staff caring for him would be equipped with everything they need to support him. And please pray that Rose will be on the mend soon so she can return to the NICU and see her baby boy. She misses seeing him!

Good night!

Chest Tube Is In!

Jude's surgeon and the attending neonatologist just stopped by the waiting room to let us know that the chest tube was inserted with no real problems. Praise God!

Approximately 100 cc of fluid was drained from Jude's chest once the tube was inserted, and the neonatologist indicated that the fluid has the same general appearance as the parenteral nutrition that was drained from his abdomen almost a week ago, but there's no certainty yet about exactly what kind of fluid it is. A sample of the fluid has been sent to the lab for testing, and the preliminary results of the testing should be back within a few hours. The lab will also culture the sample to determine the presence of any organisms or bacteria. We'll report more on this when the preliminary results come back.

It sounds like, as yet, no significant bleeding has been detected as a result of the chest tube insertion. The neonatologist led us to believe that the worst kind of bleeding would be seen right away and would be the result of damaging vessels upon insertion of the tube. There's a little bit of blood in the fluid that was drained, but it's hopefully just the result of relatively small amounts of blood oozing, which doesn't appear to be a huge concern right now and seems to have been expected. Please pray that no significant bleeding will occur henceforth!

For now, the plan is to let Jude rest and recover a little bit from this procedure, then the medical staff will begin to gauge how draining the fluid has benefited Jude and begin to work on inflating his lung. Tomorrow morning, the attending neonatologist will assess Jude and determine whether a small dose of dexamethasone might be helpful in moving him toward coming off ECMO.

Thanks be to God that the tube was inserted without incident! Please pray that draining the fluid will give Jude the space that he needs to begin showing more notable improvement!

12:35 pm: Still Waiting On the Chest Tube

Quick update: It's 12:35 pm, and a surgical resident we met in the hallway told us that the pediatric surgeon is wrapping up a procedure in the OR, and he will be up to take care of Jude in 15-20 minutes.

We'll keep you posted as we learn more. Thank you for your prayers.

Time of chest tube insertion

UPDATE:

Hi friends,
Brian just came out and let me know that the surgeon will insert Jude's chest tubes between 11am and 12noon today. We appreciate you taking time to pray for him today!

Hello from the waiting room

Hi friends,
This is Rose. I'm asking for a little extra prayer today (seems that we are constantly asking for prayer, but please know that all of your prayers are felt) because it seems that I may be getting sick. Yesterday I started to feel a little "off" and this morning I have a headache, scratchy throat and a little congestion. In normal life I wouldn't give this "off" feeling a second thought, but today is different. Because Jude is so sick and so at risk to illness - I am staying out of the NNICU for the sake of Jude's health (and all the other sick little babies). This was such a difficult decision, but I am confident that it is the best choice. So, today I am hanging out in the waiting room and waiting on Brian to come an update me on Jude as often as he can.

As Brian stated on the blog late last night, the plan today is for Jude to receive a small chest tube to help with the pleural effusion that is plaguing his lung. I am not certain about what time the procedure will be done because the surgeon is working to fit Jude in. But we are fairly certain that it will be late morning-ish. If Brian updates me with a time of surgery I will try to post it on here so that you can pray for a smooth insertion of the tube, little to no bleeding and a healthy recovery.

We are also hoping to have a meeting sometime today with all of the doctors caring for Jude to discuss the details of the plan of care for Jude over the next several days. Please pray for this meeting as well.

I also wanted to take a minute to thank all of you for the many posts, comments, texts, emails and calls from all of you. Each message lifts our spirits and lets us know that we are covered in love and prayers throughout the day. Please forgive us for not responding to all of your kind and uplifting words. We simply have not have the opportunity to respond to each one, but please know that we are reading/listening to each and every message. The Lord is truly blessing us through all of you. Thank you for being faithful to praying praying for Jude and our family and for not forgetting us.

I leave you with another song (from Isaiah 43) that has entered my mind today. I believe I learned this one while I was in youth group. It has continued to amaze me how the Lord has brought a different song to my mind each day. Each song contains scripture that helps me get through the day. I am so thankful that the Lord has been bringing these songs to mind to help me.

When you pass through the water I will be with you;
and the waves will not overcome you.
Do not fear, for I have redeemed you;
I have called you by name: You are mine.

For I am the Lord, your God.
For I am the Lord, your God.
The Holy One of Israel, the savior.
I am the Lord.

When you pass through the fire
You’ll not be burned;
and the flames will not overcome you.

Do not fear, for I have redeemed you;
I have called you by name: You are mine

First Day on the 3rd ECMO Circuit

After a very stressful morning, Jude had a relatively uneventful day today.

As I indicated in a post early this morning, Jude had a large clot in his ECMO circuit, which prompted it to stop working completely; consequently, Jude had to be put on a new circuit altogether.

While Jude is on ECMO, his blood leaves his jugular through a venous cannula (a very large catheter), oxygen is added and carbon dioxide is removed in an oxygenator component, then the oxygen-rich blood is returned to Jude through an arterial cannula in his carotid artery. However, as Jude's blood passes through the tubing of the ECMO circuit, his body thinks that it (the tubing) is a foreign object, so his immune system responds accordingly, and one of the things that can happen with that response is clotting in the circuit. A certain amount of clotting in the ECMO circuit is to be expected, particularly as a circuit ages; however, as clots form, there is always a certain risk that small clots could pass from the circuit into Jude's body or that clots could stop the circuit from working. The latter of these scenarios is what played out this morning. A large clot that had formed in a part of the tubing dislodged and clogged the oxygenator, thus stopping the circuit from working.

When the ECMO circuit stopped, Jude was quickly taken off bypass and his ventilator settings were adjusted to give him additional support until he could be hooked up to a new circuit. We thank God that Jude weathered this transition relatively well: His vital signs were reportedly stable, and his arterial blood gas analyses while he was off ECMO weren't fantastic, but they could have been worse. Once Jude was on the new circuit and things settled down a little bit, Rose and I were allowed to go back into the NICU to see him and talk with his doctors and nurses.

As the day wore on, we eventually met with several of Jude's doctors, including two attending neonatologists and his pediatric surgeon, and a tentative plan for this week began to take shape:

The overarching goal in the short term is to get Jude off the ECMO circuit. To that end, his doctors and nurses will attempt to "dry him out" by removing extra fluid from his body and challenge his lungs in order to get them expanded and working better.

Jude has had a longer-than-usual course on ECMO, and he's had a lot of unforeseen setbacks that have prolonged his time on bypass. We're thankful that such technology exists, because it saved Jude's life when he would have certainly died otherwise; however, as Jude's pediatric surgeon put it this morning, because of the risks and problems associated with ECMO at this point in Jude's care, it is becoming a "death machine" to him, and it's now imperative to relieve him of it as soon as possible.


At some point tomorrow -- possibly in the late morning or midday hours, unless things change -- Jude's surgeon will insert a drain (chest tube) on the right side of his torso, which will hopefully drain fluid that has accumulated in the pleural space alongside his right lung. By relieving the pleural effusion on that right lung, the hope is that it will allow for the expansion of that lung and the increase of its function. Although Jude also has pleural effusion on his left lung, the doctors won't be addressing that directly at this time. Jude's left lung is significantly smaller than his right lung anyways, so it's more important to relieve the pressure on his right lung at the moment in order to get it inflated and working. Insertion of the drain is risky since Jude is on a blood thinner, and it's a more invasive procedure than the surgeons would like to do, but its potential benefit in helping usher Jude off ECMO now outweighs the risks.

The attending neonatologist who was on duty today also indicated that, if it may be helpful in getting Jude off ECMO, he might give him some doses of a steroid called dexamethasone. This drug could conceivably provide some short term improvement in Jude's lung function, so it's something that might be used if needed.

As of this writing, Jude is relatively stable, and we're hoping that the Lord will keep him that way through the night. His lungs have largely "whited out" again on his latest chest x-ray, but we expected that as one of the consequences of his body's inflammatory response to the presence of the new ECMO circuit.

Going into tomorrow, please join us in praying for the successful insertion of the drain on Jude's right lung and that the Lord will protect him from complications such as bleeding. The surgeons will use an ultrasound to find the best possible entry point for the drain so that it will minimize the risk of bleeding. Please pray that the ultrasound tech and the surgeons will be equipped with all that they need to take care of this with no problems.

Also, please pray with us for the safe but swift removal of fluid from Jude's body and for an increase in his lung function over the next few days. It is absolutely critical that Jude's lungs expand and begin working in order for him to come off bypass. Please pray that the NICU staff will be adept in helping facilitate this through the various means at their disposal.

As we have seen already, being on ECMO has risks, and although Jude must come off of bypass as soon as possible, it's extremely important that his circuit work correctly while he is being supported by it. Please pray with us that Jude's ECMO circuit and all of the other technology being utilized in his care remain free of malfunctions or complications.

And, as always, please pray with us that God would simply, yet miraculously, heal Jude of the things that are threatening his life.

Today we are thankful that the Lord brought Jude through the shock of another serious incident, and we're thus thankful that we had another day with our son. We thank God for several of the many mercies He has afforded us in our time with Jude: The opportunity to hold his hand, to touch his head, to read to him, to speak loving words to him. Rose and I also got to enjoy a belated Christmas gathering this afternoon with some of her family from Florence, and for that we also give thanks. The love of Christ continues to surround us during this time, and in no small part we feel it through the messages, tangible support, and prayers offered up by others for our family. There are those of you who don't know us, or who are perhaps only acquainted with us, and yet you pray for us. We thank God for you as well, as we are deeply touched and comforted as you continue to point us to Jesus.

We believe wholeheartedly that the Lord knows what He's doing, and we trust Him and pray that His will be done in our lives, but we also approach His throne confidently as we ask for healing, knowing that He can do it. Out of nothing, He creates. When it seems there's no way forward, He blazes a trail. When we are dried up and have no resources left, He provides.


    Behold, I am doing a new thing;
        now it springs forth, do you not perceive it?
    I will make a way in the wilderness
        and rivers in the desert.
(Isaiah 43:19)

    In his hand is the life of every living thing
        and the breath of all mankind.
(Job 12:10)

Clot in ECMO, Changing to a New Circuit -- Please Pray!

This morning, about 45 minutes ago, Rose and I got a call revealing that Jude had a large clot in his ECMO circuit, which actually stopped the machine from working. He was emergently taken off of ECMO and put on a ventilator, and the scramble began to prime another ECMO circuit for him, as he's not yet stable enough to make it on his own without ECMO.

Rose and I entered the NICU about 5-10 minutes ago, but the surgeons were working on Jude to put him back on ECMO, so we weren't able to see him yet. One of his doctors came out to speak to us quickly, indicating that Jude's vital signs had remained stable throughout the process this morning, so we thank God for that.

We know that we have asked for your prayer many times before, but this is yet another major development in Jude's care, and we plead with you to pray for him this morning. Clotting in the ECMO circuit is always a risk, particularly on longer ECMO runs, and the results can be catastrophic.

Please pray for Jude in his hour of great need. Thank you all. Thanks be to God for carrying us and Jude through this trial.

Praying for a Miracle

Hey, folks. Things stayed pretty much the same with Jude's status today. Here are a few highlights:

• Jude's x-ray from this morning showed a little more inflation in his lungs, and his lung volume was more consistent today, even though it wasn't a significant increase over yesterday.
• Jude still has a lot of edema and swelling, particularly in his abdomen, but he's started to show some small signs of improvement. Hopefully the medical staff will continue to be successful in removing fluid from his body over the next few days.
• Jude's nurse was able to begin turning down some settings on his ECMO circuit today. These weren't significant changes, but they're a start.

In the next day or two, Rose and I will be meeting with Jude's neonatologist and his pediatric surgeon to discuss his plan of care. Generally speaking, with each passing day, the usefulness of ECMO is diminishing and the risk of complications associated with its use is rising. Although ECMO saved Jude's life and has afforded him time and support he has needed to survive, the longer he's on it, the worse his prognosis essentially becomes; therefore, the medical staff will be aggressively moving to take him off ECMO this week. The doctors are looking for the excess fluid in Jude's body to diminish and for his lungs to expand in the coming days, as these will be crucial in conditioning him to come off ECMO and be sufficiently ready for surgery.

Based on the general feedback we've received from the doctors and nurses, Rose and I feel that this week will be a make-or-break time for Jude: He can improve and undergo surgery, or he can languish.

Please continue to pray with us for a miracle. Jude's body is broken; God can heal him.

For nothing will be impossible with God.”
(Luke 1:37)

Our Greatest Need

Dearest friends,
I am writing tonight to ask you to join us in praying for a miracle for our sweet Jude.

Tonight I am not going to go into all of the details of why we know Jude's condition is serious but we simply want ask you to join us in praying specifically for a miraculous healing of Jude's little body. We know that the Lord is able to heal Jude and save his life. And we know that only HE can determine what Jude's path will be.

Later this afternoon, Brian and I met with the doctors one on one about Jude's condition. Essentially, Jude is still a CDH baby...but right now his biggest battle is with several things:

1. Sepsis has made his entire body extremely ill. Sepsis alone is life threatening.

2. Jude's body is extremely swollen and is holding a lot of fluid as a result of ECMO circuit change, his surgery, and his sepsis. Because of this extra fluid Jude has a lot of weight on his lungs and heart. Therefore his lungs and heart are struggling to function or improve. (and his lungs and heart are already struggling because of his CDH)

3. Jude's pleural effusion is back and is also keeping his lungs (particularly his right lung) from working at their full potential. Today the doctors mentioned the possibility of putting in a tube to try to resolve this problem, but this is also a life threatening procedure for Jude because Jude is on an anticoagulant medication (which is needed while he is on ECMO) which could put him at risk for major bleed.

4. Jude has been on ECMO for 18 days. Being on ECMO for so many days is not ideal. There are many serious risks and complications that can occur from being on ECMO for long periods of time. Frankly, the risks frighten us, but Jude needs ECMO right now because he is unable to carry himself. Even so, we know his time on ECMO is running out.

There are many other small medical issues going on in Jude's little body but these are the main concerns. We need a miracle for Jude. Medically, the odds are stacked against him right now. But we are going to the Lord constantly and asking Him to heal Jude. We are asking Him to give Jude the opportunity to come off of ECMO. We are asking Him to give Jude the opportunity to have surgery to repair his CDH. Mostly, we are asking our Lord to save Jude's life.

Today I was spending time with Jude at his bedside and I was praying for each little part of his body. I was praying that the Lord would heal each part of his body and I felt led to ask the Lord to heal all of the problems that are keeping him from coming off of ECMO and getting his repair surgery. And I felt led to ask the Lord to do this in two days...meaning I am praying for amazing healing by Monday. Realistically and medically, this is not likely. But I know that the Lord hears our prayers. Will you join us in praying for Jude to be healed of the problems I mentioned by Monday?

Over the last few days I've had a song stuck in my head (from Psalm 18) that I remember learning in Kids Klub at First Presbyterian Church in Florence when I was young. It has given me great comfort and I thought it was appropriate for today:

I will call upon the Lord
Who is worthy to be praised
So shall I be saved from my enemies
The Lord liveth and blessed be the Rock
And let the God of my salvation be exalted
Please let us know that you are praying....please share our request for prayer with your friends, family and church...please continue to pray for Jude as often as you think of him. We are trusting in the Lord and we know that He may not answer our prayers in the way we hope He will, but we know that He is good and that He loves us.
-Rose
P.S. Many of you have asked us for tangible ways to help us and there is a blog that was set up to guide people with ways that they can help our family. You can find this blog by following the link to Manna for the Moment on the right hand side of the page. But right now, most of all we desire your prayers for Jude's health.

Christmas Eve in the NICU

As we approach midday on Christmas Eve in the NICU, here is the latest on Jude:

Although he's very sick, he looks relatively stable at the moment. His torso is still very swollen, but it's not quite as red as it was yesterday, and his arms and legs aren't as mottled and pale as they have recently appeared.

All of Jude's blood cultures since he was started on antibiotics have been negative, so that's encouraging. He'll continue to receive antibiotics for some time to ensure that his infection is cleared up. For the moment, though, negative cultures notwithstanding, he's being regarded as a baby with sepsis.

Here are a few other things we're thankful for today:

• Jude started making some urine in the night. His urine output has been rather poor over the last few days, which I think raised some doubts about the state of his kidneys.
• Jude's nurse heard some breath sounds this morning when she was listening to his lungs. Although Jude's lung volume was actually a little bit higher yesterday than it has been today, the same nurse was able to hear breath sounds more distinctly this morning.
• The oxygen level that's being supplied to Jude through the ECMO circuit has been turned down just a little bit, from 90% to 80%. This is just a small change, and he is still receiving quite a lot of support from ECMO and his ventilator, but we're happy to see a small step in the right direction.
  

 Things that we covet your prayer about:

• That Jude's treatment for his sepsis would continue to be successful, and that his sepsis would not significantly hinder progress with respect to his other problems.
• That Jude's lung volume will increase. His lung volume and the size of his breaths through the ventilator have gone down since yesterday, and this is probably due to fluid buildup around his lungs.
• That Jude's fluid accumulation throughout his body would decrease as the medical staff take measures to try and remove it.
• That Jude's inflammation in his abdomen and other places would abate. We know that this will take some time, but we pray that the Lord will hasten his recovery.
• That Jude will be as comfortable as possible, despite being subjected to so much.
  
  

Also, please pray that Rose and I can continue to weather this time, that we can be supportive parents and advocates for Jude and for our daughter, Annabelle, and that the love of Christ would continue to surround us during this time. It's not easy being away from home at Christmas, and Jude's progress has been significantly stalled by his sepsis and previously having so much fluid in his abdomen. After seeing Jude's condition fluctuate more regularly on a day-to-day basis in his first two weeks of life (which was also very difficult, albeit in a different way), it's a very different experience to see him exhibit very few changes right now as we visit him each day. Like so many things that we're experiencing right now, we can talk to the doctors and nurses, we can ask questions, we can understand intellectually why things are happening, and we can adjust our expectations accordingly; however, it's quite another thing to know these things in your bones, to take heart, and to not sink into a serious funk on an experiential level. We're also trying to balance "being there" for Jude with "being there" for our daughter, who has been staying with us for several weeks and who has also been struggling to adapt to the myriad changes in our lives.

As always, thank you for your support and your prayers.

    The LORD is near to the brokenhearted
        and saves the crushed in spirit.
(Psalm 34:18)

Killing the Bug; Surgery Is Delayed; ECMO Continues

So it looks like Jude will continue to be on ECMO for a while.

How long? Possibly another week.

The problem is Jude's sepsis, i.e. the infection in his blood. The lab is still culturing his blood from Wednesday morning, and that sample tested positive for a gram positive cocci (which includes a range of bacteria), but, as yet, the exact organism still hasn't been identified. Jude has been on broad range antibiotics since Wednesday afternoon or evening, I think, but their effectiveness hasn't been determined just yet; however, Rose and I are encouraged that Jude's blood that was drawn for culture yesterday morning at 4 am is still, at the time of this post, testing negative for growth of the infection. The bug grew pretty quickly in the first culture that tested positive, so the fact that more than 24 hours have passed and yesterday morning's culture is still negative is good. Once (and if) it's negative for 48 hours, then I think the medical staff may be clear to take some additional measures that are needed (e.g. putting in a central catheter), even though Jude will probably continue to be on antibiotics for some time.

So although Jude's infection may tentatively resolve within the next few days, why does that mean it may be a week from now before he could possibly receive his surgical repair? Well, the main reason, as we understand it, is that Jude's pediatric surgeon can't touch him while he has sepsis, and sufficient time needs to be given for the infection to clear up before surgery can be done.

Beyond the problem of sepsis, Jude is still in relatively rough shape right now (even though he's slowly looking better): His body is still recovering from the trauma associated with his ECMO circuit change and having half a liter of nutritional fluid in the peritoneal space of his abdomen that had to be drained through surgery and insertion of a tube. Such cumulative trauma or insult has prompted an inflammatory response in his body, which has had various consequences that are still being resolved as he recovers. His lungs collapsed; his abdomen has become irritated, inflamed, and has been leaking serous fluid; his blood vessels have temporarily been "sick" and have been leaking more fluid into surrounding tissues than they probably would otherwise; and fluid has accumulated on his chest wall, which is exerting a certain amount of pressure on his lungs. Suffice it to say that our little man has already been through a lot, and he still has a long journey ahead of him.

The plan for Jude's care over the next week won't be too dissimilar from what has already been done. The difference will be that the medical staff will probably be more aggressive in conditioning him and getting him primed to come off ECMO. They'll be using the a component of the ECMO machine to do hemofiltration and dialysis, which will pull extra fluid out of his body. They'll also continue with lung conditioning, which essentially consists of chest physiotherapy -- a little vibrating tool is applied to Jude's chest and torso, which breaks up accretions of mucus and other secretions in his lungs and allows them to expand -- and adjusting ventilator settings to inflate Jude's lungs and push them to work a little harder. And, of course, Jude will be on antibiotics, broad range or more specialized (if needed), to resolve his sepsis. The idea is to optimize Jude's condition before coming off ECMO so he'll have the best possible chance of surviving both before and after surgery.

Over the next few days, as you are able, please pray that Jude will continue to recover from the trauma he sustained earlier in the week, that his lung conditioning and dialysis will be effective, and that his infection will resolve quickly.

    God is our refuge and strength,
        a very present help in trouble.
    Therefore we will not fear though the earth gives way,
        though the mountains be moved into the heart of the sea,
    though its waters roar and foam,
        though the mountains tremble at its swelling. Selah
    There is a river whose streams make glad the city of God,
        the holy habitation of the Most High.
    God is in the midst of her; she shall not be moved;
        God will help her when morning dawns.
    The nations rage, the kingdoms totter;
        he utters his voice, the earth melts.
    The LORD of hosts is with us;
        the God of Jacob is our fortress. Selah
    Come, behold the works of the LORD,
        how he has brought desolations on the earth.
    He makes wars cease to the end of the earth;
        he breaks the bow and shatters the spear;
        he burns the chariots with fire.
    “Be still, and know that I am God.
        I will be exalted among the nations,
        I will be exalted in the earth!”
    The LORD of hosts is with us;
        the God of Jacob is our fortress. Selah
   
(Psalm 46)

Resting and waiting on 12/22/11

Hi friends,
Jude spent most of the day resting and trying to recover from the traumatic events of the last two days. We spent most of our time touching and talking to him today. We are trusting the Lord's plan for Jude. He is God's child and we are giving him completely our loving Father.

Here are a few quick updates on Jude:

- We are still waiting on the official ID of the type of infection that is plaguing Jude's little body with sepsis. We know that there is an infection in his system but we must wait around 48 hours for the cultures to "grow" so that the infection can be properly identified. Once it is identified the pharmacist will create a special antibiotic to more directly treat his infection. Currently, Jude is receiving a broad range of antibiotics to attempt to "kill off" the infection even before it is identified. Please pray that the broad range antibiotics are effective as soon as possible and that the culture will begin to give an indication of the type of infection soon as well.

- An ultrasound of Jude's belly indicated that there is little or no fluid remaining within his abdominal cavity after his surgery. Praise the Lord! Please continue to pray for his abdomen, it remains quite swollen from the trauma of his surgery. Please pray that that he will become less swollen very soon. He seems so uncomfortable and it simply breaks our hearts.

-Additionally, Jude's lungs are now "whited out" again. Meaning his lungs are not functioning very much at all. It is believed that they are "whited out" because of all the pressure from the fluid that was once in his abdominal cavity and from all the extra fluid and puffiness that remains from the trauma he endured. Pray that the pressure will be lifted and that his lungs will perk up and start working again. Before the fluid build up his lungs were working quite well and getting good volumes.

- Despite all of this tough news we were encouraged by how much better Jude looked today in comparison to yesterday. He still looks terribly ill and weary. Pray that his body will continue to mend and that he will continue to rest his tiny little body as much as possible. It is killing us to watch our little guy struggle and endure such traumatic procedures. He is such a trooper and it is our prayer that he feels the presence of the Lord with him at all times.

- Please continue to pray that Jude will be well enough to come off of ECMO soon and that he will be given an opportunity to have his repair surgery completed. We'd really like for him to have an opportunity to try both of these. Please continue to ask the Lord to provide a way for Jude to get healthy enough to take these steps. We know that these steps may be days/weeks away, but we'd truly appreciate you praying for these opportunities now.

Thank you for your encouragement, support and prayers. Each gesture is felt and lifts us up. The Lord continues to carry us each day.
- Rose

    I call upon you, for you will answer me, O God;
        incline your ear to me; hear my words.
    Wondrously show your steadfast love,
        O Savior of those who seek refuge
        from their adversaries at your right hand.
  
(Psalm 17:6-7 ESV)

Quick Update -- Please Pray for Jude's Infection

I just got off the phone with Jude's nurse for today. Here's a quick rundown on what I learned:

• Ultrasounds of Jude's head and his IVP (blood vessel going up to his heart) look good and clear. Praise God!
• Jude's ECMO settings have been increased to give him some extra support. He's been through so much in the last 36 hours that this isn't a big surprise. Pray that the machine gives him what he needs!
• Two cultures have confirmed that Jude has an infection in his bloodstream. It's likely that the organism had its origins in the fluid removed from Jude's abdomen, which was rife with sugar and thus conducive to growth. The lab has a partial identification of the organism and has started Jude on broad range antibiotics, but more time will be need to ID the exact organism in his body. Please pray that the identification will be swift, that measures can be put in place to fight it quickly, and that Jude's little body, as weakened as it is, can withstand this infection with little or no damage.

Jude continues to encounter obstacles, but we know that our God is good and mighty to save, so we look forward to seeing how He will work through this next stage.

Stay tuned!

Emergency Surgery In the Night

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.
(Ecclesiastes 7:13-14)

    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.   
(James 1:2-5)

    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)

Midday Update -- New ECMO Circuit, But No Chest Tubes

The tentative plan for Jude's care has changed a few times since my last post, but the gist is this: Jude's ECMO circuit has already been changed, but, for now, there's no plan to surgically place chest tubes in him to drain the fluid that has accumulated on his lungs (i.e. the bilateral pleural effusion).

Jude's pediatric surgeon isn't ready to attempt surgery to insert chest tubes since he's on heparin (an anticoagulant) and, perhaps more notably, since Jude's bowel is still on the left side of his chest. If Jude had already received his surgical repair or if he was on the cusp of having it done, then chest tubes to relieve the pleural effusion would be more feasible, I assume; however, at the moment, his surgeon and neonatologist aren't ready to attempt it, particularly with the possibility of damaging his bowel in the process.

For now, it sounds like the staff will attempt to stabilize Jude on the new ECMO circuit, continue his lung conditioning, and take several other measures in order to address the buildup of fluid on his lungs and the consequent pressure on his heart.

We continue to pray for Jude's health and miraculous healing, and we likewise pray that the doctors and nurses overseeing his care will be accorded wisdom and discernment that exceed even the sum of their knowledge and experience. We thank God that we have compassionate medical staff who are measured and thoughtful in their various approaches to taking care of our son.

Discouraging News -- Please Pray

Folks,

This post will be brief, but after you read it, if you are able, please pray for Jude, as his situation has taken a turn for the worse.

I was alone when I walked into the NICU this morning, and it's the Lord's mercy that Rose wasn't with me because Jude didn't look good. He was very pale and just appeared to be ailing, which was a sharp contrast to his appearance over the last few days in which we had looked forward to him coming off ECMO. Cardiology was just finishing an echocardiogram that never really got started in the way that it had originally been planned, because the staff discovered that Jude has bilateral pleural effusion, or fluid on both of his lungs. This fluid is exerting pressure on his heart, and, in light of this discovery, the staff stopped short of clamping Jude off from the machine for the duration of the echo as they had originally planned.

After talking to Jude's doctors and nurse, I learned that they are sufficiently concerned about his fluid on his lungs that they are now asking our pediatric surgeon if he would be willing to put in a chest tube to directly remove the fluid. This is a much more invasive approach than the staff have wanted to risk before, particularly in light of the fact that he's on a blood thinner, but apparently they think that its potential benefits now outweigh its risks.

Also, much to my disappointment, we learned this morning that Jude's ECMO circuit has enough clotting in the tubes and in the oxygenator that the staff now think it is best to change out the circuit entirely. When Rose and I have asked about changing out the circuit before and the circumstances in which that is done, we were told that it was generally avoided at all costs, as it can be something of a shock to the patient and carries risks and potential consequences (just as every measure seemingly does). After being under the impression that Jude's ECMO circuit was generally clear of clotting (notwithstanding some small signs that clots were beginning to form), learning this morning that the circuit will now probably be changed out completely was very hard to hear.

I have to be honest: Hearing all of this news and seeing Jude look so pitiful was devastating. Every part of me wanted to scoop up my child and embrace him, even though I knew that won't change anything. I had to leave; I had to get out of the NICU. Rose and I just feel wrung out, and although we hope and pray that Jude's journey will continue such that we're in this for the long haul, the weight of it is grinding us down. We need God's mercy, and we pray for his mercy for Jude in particular, that He would foster healing in his little body.

Even as we're struggling with this emotional roller coaster, we still know that Lord is compassionate and that he has been, is, and will be merciful beyond our deserving. And we know He is with us. Please join us not only in crying out to Him for His mercy and healing for Jude, but please join us in praising Him and giving thanks, because He is good. He's more powerful and more loving than any of us can fathom, and ultimately only He can heal Jude and afford the rest of us the peace that surpasses all understanding in the midst of such trials.

I'll update you all as we learn more throughout the day. Thank you for your love and your prayers.

Brian

And behold, I am with you always, to the end of the age.”
(Matthew 28:20)

One More Day On ECMO

So...Jude will be on ECMO for one more day.

Generally speaking, the trial off that ran from 4 am - 8 am this morning went reasonably well. His CO2 levels were a little high when his blood gases were tested, but Rose and I weren't that surprised by that because his CO2 had been a little high even before the trial. Otherwise, Jude weathered the trial without too much difficulty from what we were told. The ventilator settings were increased just a little bit during the trial, i.e. the rate that the ventilator was breathing for him was increased from 30 per minute to 40.

So what's next? Why is Jude still on ECMO?

In short, the medical staff want Jude to be in the best condition possible when they take him off bypass.

His pulmonary edema (i.e. fluid buildup in the lungs) and pleural effusion have worsened over the last few days because he has received so much extra fluid, largely in the form of blood products. Moreover, the medical staff previously adjusted the settings on the hemofiltration unit such that Jude would retain small amounts of fluid, thereby leaving him "wet" with sufficient fluid to test his kidneys and determine whether he could urinate. Prior to making said adjustment, the med staff had successfully used Lasix, a diuretic, and hemofiltration to remove fluid from Jude and "dry him out," which helped decrease Jude's edema and pleural effusion before. Over the next 24 hours, the same measures will be taken to remove fluid from Jude again, with the hope that net effect will be the same.

Provided things go well in the intervening time, the pediatric surgeons will decannulate him tomorrow -- that is, they'll take him off ECMO. Then, the tentative plan is for Jude to receive his surgical repair within 24-48 hours.

Tomorrow morning, prior to going off ECMO, another echocardiogram will be done, which will provide some information about the state of Jude's heart and his pulmonary hypertension.

If you would, please join us in praying that Jude's pulmonary edema and pleural effusion will get better, that his heart function and pulmonary hypertension will continue to improve, that his lungs will remain inflated, and that Jude will handle the transition off bypass well enough that he can remain on a conventional ventilator (as opposed to a high frequency ventilator).

Thank you all for your faithfulness in praying for Jude and for the many ways, tangible and intangible, that you are showing your love to our family.

    Blessed be the LORD!
        For he has heard the voice of my pleas for mercy.
    The LORD is my strength and my shield;
        in him my heart trusts, and I am helped;
    my heart exults,
        and with my song I give thanks to him.
    The LORD is the strength of his people;
        he is the saving refuge of his anointed.
    Oh, save your people and bless your heritage!
        Be their shepherd and carry them forever.
(Psalm 28:6-9)

Trial off of ECMO - Please pray!

Sorry it's been a few days since our last post. We have been very excited about Jude’s progress over the last several days but we are also very tired and weary. Our family’s journey over the last several weeks has been a tough one. But we are thankful for the answered prayers and the support we’ve been given. We are thankful that the Lord is carrying us each step of the way. Please pray for endurance and rest for our whole family. Jude needs rest for the physical challenges that he will face in the next several days. Brian and I need rest simply because we are on the go constantly and we are not sleeping well. And Annabelle needs rest….well, because she is two years old!

Jude continues to make progress on ECMO and all of his “gases” are looking good at this point. He will be taking a big step at 4am Monday morning…he will participate in a trial off of ECMO. Basically, this is a test run to see how he will handle being off of ECMO. If all goes well, the doctors will begin taking steps towards removing him from ECMO. If he doesn’t handle the trial well then they will return him to ECMO and try another trial in a day or so. Please pray for his trial. We’d love for him to pass his trial with flying colors but we’d also like for the doctors to be confident that he is ready to come off of ECMO.

It’s been tough for me as a mom to know that this next step is before us. I am so excited about the fact that he is showing signs that he might be ready to come off of ECMO but I am also so nervous about Jude not having ECMO. ECMO was scary when we needed it but now I am scared to leave it. Both sides of the coin have their concerns and challenges. Mostly, I am just nervous about the next steps in Jude’s journey: coming off ECMO, surgery and recovery from surgery. Please pray that we will trust that the Lord has prepared our steps long before we arrived here. Pray that we will continue to remember this as we approach the ups and downs of our next steps.

I am so proud of Jude for doing as well as he has. He is such a beautiful little boy and he has worked so hard over the last few days. Please continue to pray that his lungs remain open and healthy. Please continue to pray that the pleural effusion stays small and pray that his pulmonary hypertension will abate. And please pray that all of the rest of his little body will work towards healing and not towards sickness.

We covet your prayers this week. This could be a HUGE week for Jude. We promise to update you as often as possible.

Midday Update!

Hi, folks! Rose and I decided to cobble together a quick update after a little more encouraging news we received this morning.

Jude's lungs have opened up considerably in the last 24 hours, and now the discussion has begun about weaning him off ECMO. The "sweep" on the ECMO unit will need to be brought down quite a bit before he is ready to come off, but the tentative plan is to continue his lung conditioning, re-postioning him, suctioning secretions and mucus out of his lungs, decrease his sedation to encourage a little more activity on his part, and gradually begin turning the sweep down on the machine (provided his CO2 levels don't get too high). Presently, the sweep is helping regulate Jude's carbon dioxide levels in his blood, which, in turn, affects his pH levels. Maintaining Jude's carbon dioxide levels within a particular range will be important as he nears a trial run off ECMO, which we're hoping may be on the docket for early Sunday morning, provided all goes well in the intervening time. The "flow" of the ECMO unit (i.e. the rate at which the unit's artificial heart is circulating blood through his body) has been turned down to 50%, and hopefully the medical staff will be able to bring that down to 40% in the next day or two. The CVVH component on the ECMO unit, which functions like an artificial kidney, has now been set to net zero, meaning that it's not going to be used to pull off additional fluid from Jude's body. He was puffy and swollen before, which is common with babies on ECMO because so much fluid and blood products have to be used while they are on bypass; however, after several days of using the CVVH unit and diuretics to get some of that fluid out of Jude's body, our little man is pretty dessicated and skinny, but he's healthy! 

Also, Jude's pleural effusion on his right lung looks much better! This morning's chest x-ray showed notable amounts of air in both his right and left lungs, and it appeared to show notable improvement with his pleural effusion. (A recent echocardiogram appears to have further confirmed improvement with the pleural effusion, too.) His bowel appears to be rather decompressed, although some further decompression of his stomach may be in order (i.e. the pediatric surgeon would like to see it decompressed further prior to surgery).

So what does all of this mean?

In short, Jude is improving, and if the positive trend continues over the next few days then he may be ready to come off the ECMO unit. After that, he would probably go into surgery relatively quickly. But before there's any further consideration of surgery, Jude needs to continue on his present journey to get off ECMO.

All in all, we are very encouraged by Jude's progress. However, this is just the first stage in what will probably be a very long journey to Jude's recovery. Even after coming off ECMO, the battle will be far from over, and so we ask that you please continue to pray fervently for Jude's progress.

Please pray that Jude's carbon dioxide levels will come down to the desired range and stay there as the medical staff gradually begin to turn down the settings on the ECMO unit.

Also -- and this will probably be a recurring prayer request throughout Jude's journey to recovery -- please pray that Jude's pulmonary hypertension will abate. It will probably be Jude's biggest obstacle in the weeks and/or months to come as he comes off ECMO and recovers after his surgery.

Thursday - A little good news

Hi friends,
My mind is all over the place and I am struggling with how to compose this post. Every day is so busy and we are so consumed by what is going on with Jude and all of the information that the doctors are sharing with us throughout the day. Often I struggle with the best way to communicate all of this information with all of you. I want to make sure that it is clear and purposeful. Please forgive me if this post seems to jump all over the place.

Here are a few highlights of the last two days:

- First, our positive news: This morning Jude had a visit from the respiratory therapist and Jude's lungs were expelling some of the fluid that was such a concern. The respiratory therapist said that quite a bit of "funk" came up and out! We are SO thankful for this answer to prayer. We are confident that the Lord's hand is in this amazing change. The nurse even commented, "we have no idea why he is coughing up the fluid...but we will take it!" Today Jude will continue to receive several treatments from the therapist so will you join us in continuing to pray for continued removal of the fluid in his lung? They hope to have another x-ray completed tonight to see if any progress has been made in removing the problematic fluid. Please pray for this X-ray. Pray that the Lord will allow the respiratory therapy to be productive and that he would resolve this issues completely. We are so thankful that so many of you have been praying for healing for the fluid on his lungs. Please keep praying!

- Please continue to pray for his bowels to remain decompressed and pray that they will continue to decompress. We need his bowels to be decompressed before the pediatric surgeons can even begin to consider doing Jude's CDH repair.

- Please pray for miraculous healing of his pulmonary hypertension. Last night we were told that Jude's pulmonary hypertension will continue to be an issue for quite some time. It may continue to be a problem after he comes off of ECMO and it may continue to be a problem after his CDH repair. Please join us in praying that this problem will be completely and surprisingly resolved.

- Brian is feeling much better. Last night he went to a local urgent care to find out a diagnosis. He found out that he has sinusitis so they gave his a steroid shot and some antibiotics to help him recover more quickly. He was given permission to visit Jude again with the condition that he wear a mask for the next 24 hours. He was SO happy to have time with our little guy again. It was so difficult to be away from him for 3 days. Thank you to all of you for praying for him.

-Last night during out visit with Jude I was given the opportunity to help give him his bath (sponge bath) and put lotion on him. It was so wonderful to participate in "normal" baby care for my son. It was so great to take part in caring for his needs.

- Recently we were informed of another problem that Jude is facing:  pleural effusion. This condition can be difficult to explain. Brian found a website that explains it this way:
There are two thin membranes in the chest, one (the visceral pleura) lining the lungs, and the other (the parietal pleura) covering the inside of the chest wall. Normally, small blood vessels in the pleural linings produce a small amount of fluid that lubricates the opposed pleural membranes so that they can glide smoothly against one another during breathing movements. Any extra fluid is taken up by blood and lymph vessels, maintaining a balance. When either too much fluid forms or something prevents its removal, the result is an excess of pleural fluid--an effusion. The most common causes are disease of the heart or lungs, and inflammation or infection of the pleura.
Please pray that the pleural effusion will clear up. The doctors have been trying several different methods in the last two days to clear up this problem but currently the pleural effusion remains. Please pray that the doctors methods will prove effective in the next few days!

Update! Later this afternoon Jude received another x-ray to get a look at his lungs after several respiratory treatments and there is a major change in the appearance of his lungs on the x-ray!!! Praise the Lord! In addition, they have changed the settings on the "stand by" ventilator to exercise his lungs a little more to help them "open up" a little more. This will help prepare his lungs for the BIG push after he comes off ECMO.

I apologize that it took me so long to post this blog! Thank you for continuing to check on Jude. We continue to be overwhelmed by the number of people praying for Jude. Thank you for taking time to let us know that you are praying for Jude and our family. Please continue to share Jude's story with others so that they can join us in praying for our little guy.

Please check back tomorrow for another update. Brian and I are alternating days on posting updates on the blog.

 O LORD, you have searched me and known me!
 You know when I sit down and when I rise up;
  you discern my thoughts from afar.
 You search out my path and my lying down
  and are acquainted with all my ways.
 Even before a word is on my tongue,
  behold, O LORD, you know it altogether.
 You hem me in, behind and before,
  and lay your hand upon me.
 Such knowledge is too wonderful for me;
  it is high; I cannot attain it.
(Psalm 139:1-6 ESV)