Tuesday, January 31, 2012

Bring on the CUTE!

"Hi friends, just wanted to show off how cute I look in the onesie that my mommy's MOPS friends made for me!"

Seriously, how cute is our little man? I took this picture just after Jude was bright eyed and happy after receiving physical therapy today. He charmed all of us with his sweet little ways.

What's new with Jude today?

Well, first of all Jude had a much better today! Thank you SO much for your prayers for Jude over the last few days. We were worried for our little guy and we knew that we could come to all of you asking for prayer. Thank you for being so faithful to pray for healing for Jude.

Overall he was much happier and fussed a lot less. I had the opportunity to hold him twice today and he slept soundly both times. I love cuddling with him! We are starting to think that he is a mommy's boy. He seems to cry or fuss the most after I leave or place him in the bed.

Jude has been using his CPAP much better than he was two days ago and he is making his way back down to the settings he was on about a week ago. He is breathing SO much better than he was a few days ago. Please pray for continued improvement with his overall breathing and that his lungs would remain open and healthy! Tonight he is hanging out at 23% oxygen! Yay!

The doctors decided to wean more of Jude's pain medication today. This is the first wean that he has had in about a week. We hate that Jude may face some withdrawals but we also know that this means Jude will be one more step closer to being completely off of his medication. Please pray that he will be able to handle any withdrawals that he may face as a result of this wean.

They also upped Jude's feeds today by one ml. (that puts him at 5ml per hour) Jude seems to be much more comfortable now that they moved his tube further into his digestive system to give his stomach a break. It is also believed that Jude may have been struggling with some acid reflux (also common in CDH babies). At this point they are not planning to investigate with a small camera just yet but if he displays signs of problems they may decide to check him out. Please pray that his stomach will heal and rest well over the next several days so that it will be ready and happy to accept mommy's milk again. Pray that his digestive system as a whole will be able to start working, get healthy and be ready to take on more feeds.

Now on to more cute stuff!

Here is a short video of Jude stretching this morning. (Please ignore my random conversation with Meghan, one of our favorite nurses, during the video)

And here is another picture of Jude sitting up during his physical therapy session today! LOVE those chunky cheeks!
I showed this picture to Annabelle today and asked her "Who is this, Annabelle?" She promptly responded, "Papa Jack!" What do you guys think (those of you who know Papa Jack)???

Goodnight folks and thank you for praying for Jude and our family!

O boundless love divine! How shall this tongue of mine
To wond’ring mortals tell the matchless grace divine—
That I, a child of hell, should in His image shine!
The Comforter has come!
- The Comforter Has Come - Jars of Clay

Monday, January 30, 2012

Mid-day prayer requests

Hi friends,
I just got off the phone with Brian (he is spending the first part of the day with Jude) and he said that Jude quite fussy again today and it is difficult to pinpoint why he is upset so often. Here are a few details about his day:
  • Jude is hanging out at the same settings he has been on for awhile on the CPAP. Occasionally the nurses have to give him a little "bump" of O2 when he gets really upset and isn't taking in quality saturation of O2. As you may remember, last Saturday Jude was on CPAP settings of 21% oxygen and he was receiving pressures at 5. Over the past few days he has been lingering between 28% and 50% oxygen and receiving pressures between 7 and 8. So, essentially he seems to be struggling a little more with his CPAP. It's not been mentioned yet, but my biggest fear right now is that they will re-intubate him with the conventional ventilator. The doctors have not mentioned this, but I know that Jude is lingering towards the highest settings on the CPAP. Will you join us in praying for improvement with Jude's ability to function on CPAP? Pray that his lungs will get stronger and recover well from the lung troubles that he has been facing.
  • They haven't weaned Jude's medication in many days because he has been struggling so much. We don't want Jude to be uncomfortable or to suffer through major withdrawals but we also want him to wean off his medication so that he can eventually go home! Please pray that Jude will feel up to the challenge of being weaned off his medications as soon as possible. Pray that the Lord will offer him comfort and rest with each trial that he faces.
  • The doctors made some changes to Jude's feeds today too. It appears that Jude's stomach might be inflamed right now. Therefore the doctors have decided to place a tube further down Jude's digestive system to allow for the continued absorption of milk but it will also allow for his stomach to rest, recover and heal. There is also a chance that they may investigate his digestive system with a small camera in the near future. Will you pray that the "break" that his stomach is receiving will be helpful and encouraging to his overall digestive health? Pray that there is no need for an investigation by camera and that he will be able to resume his "normal" feeds as soon as possible. 
That is the update for now. As I said before I gathered all of this information from a short conversation with Brian over the phone so hopefully Brian will be able to give you a more detailed blog update tonight about the changes Jude has been facing. But we wanted to go ahead and ask all of you to pray for our sweet boy.

Thank you friends.

    “Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened.
(Matthew 7:7-8 ESV)

Saturday, January 28, 2012

Rough Day

Jude struggled throughout the morning and early afternoon hours today: He cried, thrashed about, had a mottled appearance, and was generally in distress. He would have a tantrum, wear himself out, rest, then he would repeat the same pattern. The analogy that seems most appropriate to characterize his behavior is that of a boxer who goes through a round in the ring, takes a short breather, then jumps back in for another round.

As it happened, I had a rough morning emotionally, and so I'm sad to say I didn't exhibit much stamina when I attempted to hold him: After about 15-20 minutes of Jude's tantrums and my inability to calm him, I decided to hand him off to be put back in the bed. Thankfully, Rose was up to the task of holding him today, but even with her singular ability to calm him, he still fought relentlessly against his unknown source of distress. At one point when she was holding him, his one arm that was free was beating her chest repeatedly while he cried. It was like that for hours, and nothing seemed to settle him for any notable period of time. Needless to say, it was a little discouraging to watch.

Since Jude is presently being weaned on his pain medications and sedation, behavior such as we saw today (and even the past few days) isn't completely unexpected; however, given all of the variables in the equation today, things just didn't seem to add up. We wondered if there was some unanticipated factor influencing his behavior.

One indicator, however, led our nurse suspect something was amiss: Throughout the morning, Jude was requiring an increasing amount of oxygen support through his CPAP to keep his oxygen saturation (a measurement of the oxygen in his blood) in an acceptable range. To be sure, over the last few days, Rose and I had seen the medical staff increase the pressure and oxygen support on Jude's CPAP, but this morning his decrease in oxygen saturation  and the subsequent need to increase his oxygen support became more pronounced. Eventually, at one point around midday today, Jude's CPAP pressure was nearing its ceiling and his oxygen was at 55%, up from 21% just a few days ago. Jude's nurse consulted with his physicians, and they resolved to do a blood gas analysis and get an x-ray of Jude's lungs in the hope of finding the source of his respiratory regression.

Jude doesn't have an arterial catheter anymore, so the medical staff has to stick his heel and draw blood for tests now. :( The results of the blood gas were a little unnerving: His pH was 7.19 with a CO2 partial pressure of 69. In short, his pH was too low (i.e. it was too acidic) and his CO2 was too high. The presence of too much carbon dioxide in the blood can drive down a patient's pH and cause respiratory acidosis, a pH imbalance that makes the body's system more acidic than normal.

The x-ray provided further clarification of Jude's problem: Except for a small region on the lowest lobe of Jude's right lung, his x-ray looked mostly "whited out" because of pulmonary edema, a buildup of fluid in his lung tissue.

Earlier this week, when Jude was doing very well and had reached his "dry weight" (his presumed age-adjusted weight in the absence of any notable fluid retention), a diuretic he had been receiving twice each day (Lasix) was discontinued. Thereafter, at some point this week, the medical staff resumed administration of Lasix, but with only one dose every 48 hours. In the intervening time since Jude stopped getting daily doses of his diuretic, he apparently started retaining fluid in his lung tissue.

Once Jude's problem came into view, things suddenly became more clear about why he was probably so stressed today: He couldn't breathe. Well, he could breathe, but only with extreme difficulty. Add to that any discomfort he might have been experiencing as a consequence of withdrawal from his pain meds, and it's certainly understandable why the poor little guy was so upset.

Jude's had pulmonary edema before -- that's not new. He's had issues with fluid retention for a variety of reasons throughout most of his time in the hospital. This time, however, Jude is presumably more aware of what's happening because he's being weaned on his pain meds and sedation; therefore, it's reasonable to assume he could get crankier when he's uncomfortable.

After the pulmonary edema was discovered, Jude was given a double dose of Lasix to jump-start his recovery, and he had a very good (i.e. big) response: He urinated about 300 cc, saturating his diaper, his blankets, and his sheets! The next blood gas, while not perfect, was much, much better. Praise God!

While Rose and I are very glad that today's problem was identified and addressed, we are still a little uncertain why Jude is retaining so much fluid and why it seems to be going straight to his lungs. His nurse today suggested that it could be because of lung injury he sustained when being mechanically ventilated. As we've said on the blog before, mechanical ventilation, while it is life-saving, can slowly damage a patient's lungs, particularly if it's necessary to use higher pressure to help a patient breathe. Please pray with us that the Lord will protect Jude's lungs and that He will heal whatever damage may have been previously incurred.

We've told you the not-so-fun stuff from today, so what about the good stuff?

The latest testing on Jude's stool revealed only traces of malabsorption. That's great! To be sure, he's only getting 4 milliliters of breast milk per hour, but there's the promise that, given a little bit of time and conservative increases in the volume of his feeds, his malabsorption will get better. We are so thankful for this, but we ask that you all please continue to pray for his bowel and digestion process, that things would go well for him.

Rose and I continue to be thankful that God has placed us in Charleston and at MUSC among such amazing people and technology. The medical staff at MUSC Children's Hospital -- nurses, physicians of all types, respiratory therapists, occupational therapists, and more -- are competent and compassionate in their care of our baby boy. God ordained that loving, skilled hands would be upon our son and that mind-bending technology would be deployed to do His will. We know that Jude's health in the face of such adversity bears testimony to the Lord's miraculous healing, worked out through those who are caring for him.

Crossbridge Ministries has been amazing in providing a place for us to live (and other wonderful forms of support) while we're in Charleston, and the far-reaching impact of that ministry in our lives cannot be overstated. Brothers and sisters in Christ from nearby churches have also been extremely gracious in reaching out to us: Folks from Lighthouse Church, Mount Pleasant Baptist Church, East Cooper Baptist Church, and other congregations of His body have loved on us in real, tangible, meaningful ways, and we praise our God for that. Our home church in Greenville, Downtown Presbyterian Church, has been amazing to pray for us, provide support, and continually point us to Jesus for our comfort and hope, encouraging us during a difficult time with the comfort with which they have been comforted by God (2 Cor 1:4).

We continue to get messages and various kinds of loving support from people near and far. To you who read this blog and/or pray for Jude: No matter who you are or where you are, we are humbled that the life and welfare of our son should be on your heart.

A quick note at 10 pm: Jude's latest gas was another good one! His pH was 7.44 and CO2 was 54. (Caroline, we thought you might be interested in these numbers. :) Thank you for all you did today! You're one of our favorites!)

    For the LORD is good;
        his steadfast love endures forever,
        and his faithfulness to all generations.
(Psalm 100:5)

Thursday, January 26, 2012

Quick post because Daddy is coming home!

Hi friends!
Brian is on his way to Charleston now so I am SO ready to see him! He should be here any minute, so I am going to make this quick. It's tough being apart for several days each week. Jude, Annabelle and I miss him so much.

So, here is the update on Jude:
  • Jude was much more comfortable today and was handling his CPAP a little better too. He was resting comfortably in my arms for most of the morning. He actually spent most of the morning awake looking at me and listening to me talk to him. He is so expressive with his facial expressions (like his daddy) and even gave me a few little smiles. The nurse and I were in agreement that he seems very appropriate cognitively for his age. Honestly, he is so attentive at times that it seems like he just wants to speak! :) 
  • Jude is still receiving only half of the amount of milk that he was receiving a few days ago because he was not absorbing it properly. They will be running another stool test this evening to see how his absorption is going. Will you pray for better absorption? We'd love to see his little system working well and ready to accept breast milk!
  • They have not weaned any of Jude's medication over the last few days because of the little struggles he's fought through recently. But we are anticipating that they will likely wean more in the next couple of days. He's handling it like a champ. I know it must be hard. Please keep praying for our little man as he experiences withdrawals. 
  • I also wanted to ask you to pray for three families. Currently, there are two other sweet babies on ECMO in the NNICU. I don't know their names or their parents names...but I know that the parents must be so worried for their babies. I pass by the babies every morning and I pray for them each day while I eat my lunch. Will you join me in praying for these two families? Also, I wanted to ask you to pray for the Knoll family. They recently found our blog because they were seeking to learn more about their own sons CDH diagnosis. They are expected to deliver in May. Will you follow their blog and pray for their sweet baby, Parker? Here is a link to their blog: www.abbylou9.blogspot.com I know they will appreciate your prayers and encouragement! 
Brian will be visiting with our little guy tomorrow so you will likely get an update from him sometime in the next few days. Thank you for keeping up with Jude and remembering to pray for him. I've thought of all our blog readers and prayer warriors a lot over the last few days. You are such a blessing to our family!

Tuesday, January 24, 2012

50 days old and a little step back

Hi friends,

Jude is 50 days old!!

Thank you for continuing to follow our blog...and thank you for being patient and waiting for an update on Jude.

Since our last post on Saturday things have been pretty steady for Jude. The doctors continued to up his feeds and wean his medications little by little. But today things changed a bit for Jude. Here are a few things that happened today:

  • The doctors decided to back down on Jude's feeds today by half because he was having several watery stools. Because they were unsure about what might be causing Jude to have watery stools they ran a test to see what was going on. The test results revealed that Jude is suffering from mal-absorption, meaning that he is not absorbing the nutrition from the breast milk like he should. So, they decided to slow his feeds a little bit to allow his bowels to "wake up" a little more and hopefully they will begin to absorb a little more after more time passes. We were a little bummed by this news because he was "trucking" along with his feeding. But we were also told that there would be days when Jude would take two steps forward and one step back...and today was one of those days for his digestive system. Will you lift him up in prayer in this area? We'd truly appreciate it. And please say a prayer of thanksgiving for the fact that things are still moving through his system, despite the fact that it is not being absorbed as much as it should. 
  • One of the results of Jude being weaned from his meds and "waking up" a bit more is that he is more aware of the things being done to him. Over the last two days Jude's gag reflex seems to be much more apparent and he has vomited a few times as a result of oral stimulation with a paci. Jude gagged today while the occupational therapist worked with him and at the end of her session she explained to me that we should slow down on his oral stimulation because his oral aversion appears stronger now that he is becoming more aware and less sedated because of the medication wean. Will you join us in praying that Jude will adjust and accept oral stimulation a little more over the next few days? We'd love for him to move closer to larger feeds but we know that he must go at his own pace.
  • Also today Jude seemed to be working harder to breathe and it concerned me quite a bit. My mommy radar was going off so I asked our nurse (Meghan, another one of our favs) to check him out and she also had the respiratory therapist and one of the doctors check him out. After evaluating him they did a chest x-ray, went up a little on his CPAP settings and took a blood gas to see how he was doing. The x-ray actually looked much better than it had in recent days (yay!) and his CO2 was up a little with his blood gas. First they wondered if he was struggling due to weaning his medication and if his symptoms were from withdrawals so they gave him a little extra medication to help him calm down. Then they tried switching him back to a nasal cannula for the CPAP that he was been wearing since he first went on. (he got a new tighter fitting one last night) And the switching out of the nasal cannula seemed to solve Jude's labored breathing problems. I asked Meghan why the old cannula might work better and she explained that it is likely that the old cannulas deliver better pressures for Jude's needs. So this afternoon he was back to resting comfortably. Whew. They were even able to wean his CPAP settings back after the switch! Will you pray that Jude continues to remain comfortable on the old cannula and that he will continue to improve from a respiratory standpoint?
  • I've been able to hold Jude much more lately and I am loving every moment of it. I am even beginning to figure out Jude's little ques so that I can understand what his needs are. I love knowing what comforts him and I love being able to comfort him. Brian also held Jude quite a bit this weekend and my mom will hopefully hold him for the first time tomorrow! Praise the Lord for all this wonderful holding! 
Well, that is the update for now. I will be back with my little man tomorrow morning and hoping that he has a better day. Please join me in praying for a really good day for Jude!

- I also wanted to mention that I was hoping to do a blog post that allows for me to answer some of the questions you have about Jude, CDH, his hospital stay, our family, etc. I've already received a few questions that I hope to answer but if you have any that you'd like to ask send me an email and I will try to answer them for you.  just.enough.for.the.journey@gmail.com

    Praise the LORD, all nations!
        Extol him, all peoples!
    For great is his steadfast love toward us,
        and the faithfulness of the LORD endures forever.
    Praise the LORD!
(Psalm 117 ESV)

Saturday, January 21, 2012

A sweet Saturday

Happy Saturday!
Thus far we are all having a good weekend! Yesterday I spent the whole day with Annabelle and Brian spent the whole day with Jude. Annabelle and I had a great day living just like we did when I was a regular stay-at-home mommy with her. We played, read books, went to the grocery store and did a whole lot of snuggling! And today we switched places and I spent the day with Jude and Brian hung out with Annabelle. Annabelle and Brian spent the day playing, going to the library and running around at the waterfront park. And this evening we enjoyed a dinner out as a family of three. We were really wishing our little guy was with us. We are wishing and hoping that we will be enjoying "every day moments" with our little guy soon. I know we will truly savor moments like holding him as we walk around the house...putting him to bed in his crib in his own room...and watching him watch his little sister play. Will you pray that these moments will happen?

We are continuing to trust in the Lord's timing for Jude and we are so hopeful. But I must admit that I remain a little fearful for Jude's life. He is doing so well with his recovery from all of the medical issues that he has faced thus far BUT he is still in the NNICU. He is still a sick little baby who needs to learn to eat and come off his medication. Will you please continue to pray for Jude's health and pray that he only continues to get healthier and healthier? I worry so much about him getting an infection or facing another major medical issue. But I also know that whatever he may face, the Lord is with Jude and He is with us. God will carry us every step of the way.

Today Jude was pretty content and only faced a short amount of "fussy time" while I was with him. Jude's feeds are likely to increase daily as long as he continues to handle them well. They will also continue to wean him from the medication as often as Jude can handle it. Please pray for endurance for Jude as he faces the withdrawals from his medication. As Brian mentioned in a post earlier today, it's quite awful to watch Jude suffer through the weaning but we know it is necessary for him to leave the many medications behind. 

My favorite part of today? Holding Jude of course! :) Today I held him without the CPAP on. Instead they allowed for Jude to wear an oxygen only nasal cannula for the two hours that I held him. For the first 30 minutes I just talked to him and he studied my face intently. Then he fell asleep (sweetly) in my arms for the remaining hour and a half. While he was resting to took some time to do some of the mouth stretches and techniques with him that the occupational therapist taught me to encourage Jude's mouth muscles to want to suck and hopefully nurse in the future. He handled it really well and sucked on his paci much better than he did earlier this week!

Well, I'm off to bed! I am quite tired! Thank you for your continued prayers!

    But for me it is good to be near God;
        I have made the Lord GOD my refuge,
        that I may tell of all your works.
(Psalm 73:28 ESV)

Still Truckin' Along

Hi, folks -- it's Brian. Here's a quick update:

  • From a respiratory standpoint, Jude continues to make good progress. At the time of this post, he's still on CPAP (continuous positive airway pressure) with a low pressure setting and at an oxygen level of 21%. Room air consists of only 21% oxygen, so it's awesome that Jude is doing so well with so little oxygen support!
  • Jude's feeds are steadily increasing in volume: His hourly consumption is now up to 7 milliliters of breast milk, which is given to him continuously through a feeding tube in his nose. Rose informed me that the attending neonatologist following Jude at the moment feels that he may soon be ready to switch to bolus feeds, i.e. getting larger quantities of milk periodically instead of receiving smaller quantities continuously. That's good news! Also, Jude has continued to have poopie diapers, which confirms that most of his food is moving through his bowel. Praise God!
  • Although Jude has been successfully weaning on his pain medications, the process has been very slow, and yesterday he had his first signs of withdrawal, which was hard to witness. He cried hard for nearly two hours and was inconsolable until he was given boluses of Ativan and morphine. Although we pray that Jude will continue to wean as quickly as possible, we know that it will likely be a very slow and difficult process for him. Please pray with us that the Lord would comfort Jude as he goes through the weaning process.

Sorry for my uncharacteristic brevity, folks. Rose and I are going to try to regularly update the blog as we have up to this point, but some days it's a little more difficult to do so. Thank you all for visiting the blog to stay abreast of Jude's condition and to pray for him.

Thursday, January 19, 2012

Loving the snuggles

Hi friends!
Jude continues to have good days and we are too! It is so great to see our little guy alert and comfortable. He hung out with Lesley (I've miss-spelled her name in the last few posts!) again today and seemed pretty content overall. Here are a few updates:
  • Jude's continuous feeds were increased again today...he is now receiving 5ml of breast milk every hour.
  • They weaned Jude a little more on some of his pain and sedation medication today.
  • He received PT and OT again today. Sounds like PT got him sitting up and moving a bit more today! Yay!
  • Jude is still on the CPAP right now but today there was some discussion about moving Jude to nasal cannulas with oxygen or another form of ventilation that can continue to provide pressures to help keep his lungs open. So, we may see another form of support for Jude in the coming days. He has made great progress in this area since surgery!
  • Brian is coming back in town tonight so he will get to see Jude tomorrow morning for the first time with his CPAP on! 
I must tell all of you how much I am loving holding my sweet son. It is such a blessing to be able to finally hold him and enjoy snuggling with him. I love that we are getting to a stage in our journey that allows for more time holding Jude. I love soaking up the details of him...the way he moves his little hands...his tiny little ears...his long legs....his beautiful blue eyes....the sweet little noises that he makes...I could go on and on...
I am so thankful that the Lord chose me to be Jude's mommy. What a blessing to love and care for him each day.

O come to the Father, through Jesus the Son,
And give Him the glory, great things He hath done! —Fanny J. Crosby (1820-1915)

Wednesday, January 18, 2012

Big baby bed!

First off...some fun news!

Jude was moved from his first bed at MUSC to a crib (big baby) bed this afternoon! When I came in this morning Jude's nurse, (Leslie, one of our favorites) told me that she'd like to move Jude to a bigger bed so that he could have a little more room to wiggle. Many of you have noticed that Jude nearly looks like a toddler in his little bed because he is SO long...so today he was given a little more space to stretch out. So this afternoon I held Jude for awhile (I'm always happy to snuggle with him!) so that Leslie could make up his new bed. This bed will also allow for Jude's head to be elevated a little more than the other bed which will be helpful in keeping his lungs clear and giving him a few new views to check out. He is especially enjoying looking at the medication monitors near his bed.
Here is a picture of Jude snoozing away in his big baby bed:
Doesn't he look totally cozy?

Also, in other good news today: Jude had his echocardiogram this morning and I spoke with a doctor this afternoon who stated that Jude has little to no pulmonary hypertension (PH) right now. PRAISE TO THE LORD FOR THIS MIRACLE! We are rejoicing and thanking the Lord for this good report! Please continue to pray that it will stay away! (Just curious, CDH parents out there: Did you child show signs of PH after his or her repair surgery? If so, how long after surgery did it show up?)

Jude continues to handle his continuous small feeds well. Today they upped his feeds to 4ml every hour. Additionally the OT came by today to work with Jude on his suck reflexes to help prepare him for bottle/breast feeds in the future. Will you join us in praying that Jude will be ready and successful in all his feeding endeavors?

Today, Jude also continued his journey towards weaning off medications. The doctors did not make any weans today and allowed him to coast a little bit today. I'm nervous about how long it might take to have Jude off of all this medication...but I know that the Lord will provide exactly what Jude needs and what our family needs to travel the marathon that we are facing. Please pray that Jude will wean from his meds easily.

I believe that is all that I have to share tonight...I'm quite tired. It is a little tough settling into a new normal this week without Brian here. I'm not sure if I will be able to update the blog every single day from this point on, but I will try my best. It's been such an encouragement to share our journey with all of you and to know that all of you are praying.

    Have you not known? Have you not heard?
    The LORD is the everlasting God,
        the Creator of the ends of the earth.
    He does not faint or grow weary;
        his understanding is unsearchable.
(Isaiah 40:28 ESV)


Tuesday, January 17, 2012

Just me and my little man

Today was my first day at MUSC without Brian. It was tough to be without my sweet hubby and I know that he is really missing Jude too.  Brian will hopefully be able to work an adjusted schedule to allow for time to help with Jude's care too. We are all missing Brian and it is tough to have Jude experiencing so many changes without his daddy by his side. Annabelle is missing Brian quite a bit too. Will you keep us all in your prayers as we transition to a new stage in our journey?

Jude had a pretty good day today. He continues to breathe well with his CPAP and seems to be getting the hang of tolerating the annoying cannulas that stick in his nose. (Most babies hate how these feel in their little nostrils.) It was so great to hear Jude cry and coo throughout the day.

The doctors and nurses are beginning to start weaning Jude's pain and sedative medication now. As we may have mentioned before, weaning is going to be a very long and difficult process. Jude is a big boy and he was on quite a bit of medication for quite a long time. The hope is that Jude will experience little to no withdrawal symptoms but he may face a few struggles to be free of his medication. Will you pray that his weaning process will be much easier than anticipated?

The doctors decided to increase Jude's continuous feeds (through a line in his nose) of breast milk to 3ml an hour. It is such a small amount, but they are continuing to increase his feeds and that is good news. It is very important that Jude learns how to eat and digest breast milk so that he can grow and continue to a healthy weight. Please join us in praying that Jude will continue to have good experiences with food in his tummy. Pray for no spit ups or problems within his digestive system. Pray that everything will continue to work much better than expected. The Lord has given us so many miracles with our little Jude!

Jude had his first visits from the physical (PT) and occupational therapists (OT) today. I missed the chance to see the PT but it is my understanding that they worked with Jude on his range of motion in his limbs and neck. Jude's neck is quite stiff because he had to remain in the same position the entire time that he was on ECMO. The OT worked with Jude's oral stimulation to help him make steps towards taking a bottle or breast feeding. Jude did well with his first OT session and the OT showed me some of the ways that I can work with Jude too. I am very encouraged that Jude is now getting services from PT and OT.

Jude was supposed to get an ecocardiogram today but for some reason things did not go as planned. We are anxious for this to be done so that we can get a better understanding of any pulmonary hypertension. Please pray that the ecocardiogram will be completed tomorrow and that there will be little or no pulmonary hypertension. At this point, it seems that Jude is not suffering from pulmonary hypertension because he is not displaying any of the clinical signs that it is plaguing him. But it would make us feel much better for an ecocardiogram to give us some clear answers.

I went to visit Jude again this evening (can't stay away from the boy!) and I was able to hold him again (second time today)! I can't get enough of holding Jude. Tonight we locked eyes for quite some time and he made sweet little baby noises while I held him. Eventually he fell asleep in my arms and made my night. I am so thankful that the Lord has brought us to this point in our journey.

Rejoice in the Lord always; again I will say, rejoice. -Philippians 4:4

Monday, January 16, 2012

A big day! (Part 2)

Hello again,
Jude's mommy here. One happy mommy too!

I'm just getting back from visiting Jude and he is doing well with his CPAP. He is at normal settings and the medical staff is pleased with how he is doing.

Please continue to pray for Jude's digestive system. Please pray that he will continue to tolerate the feeds he is receiving and pray that he will move to bottle feeds. Pray that he will not experience any trouble with his bowels and that feeding will not be an issues.

Please also pray for Jude as the doctors and nurses work towards weaning Jude off of some of his pain and sedative medication. Our little guy has been on quite a bit of medicine in the last 6 weeks and now begins the very slow process of weaning. Pray for endurance for Jude and for a smooth transition with every step.

It was really dark in Jude's little corner of the NNICU but I managed to snap a picture and a video of our little guy. Jude's little voice is so hoarse from having tubes down his throat all this time but I am told that his voice will get stronger and stronger as the days pass. I'm just happy to hear Jude make noises...ventilator free noises. I am just so thankful. (I know I keep saying that but I am truly thankful for all that the Lord has done in Jude's life and ours.)

First, the picture!
And now the video!

I've had this song in my head all day. I've been thinking about Jude and the love and blessings that the Lord has bestowed him and our family. In all things God is good.

There is joy in the Lord
There is love in his spirit
There's hope in the knowledge of him
There's a fountain that flows
Like a river from heaven
Abounding in love to my soul

All blessing and honor are his
And all glory and power are his
Let all wisdom and strength
Be the Lord's in this place
Let all glory be given to him

A big day! (Part 1)

Hi friends!
Jude had a great day today! Most importantly he was extubated this afternoon! YAY!

Our hearts are full with thanksgiving! We are so thankful that the Lord has provided a way for Jude to progress so well with his respiration since surgery.

Jude is now on a CPAP nasal cannula and this means that he no long has any tubes in his throat. This is HUGE for Jude because since his first day he has had some sort of tube in his throat. Now he has the opportunity to make noise and cry!!

They moved him to the CPAP at 3pm this afternoon and Brian and I were at the house in Mt. Pleasant because Annabelle came back in to town today to stay and Brian had to head back to our house this afternoon because he will be working tomorrow. So I have not seen him with his CPAP yet. I will be leaving shortly to visit our little guy and to hold him now that he is ventilator-free! I am SO excited. One of our favorite nurses called us and let us hear him crying over the phone. It was truly one of the most beautiful cries I've ever heard. I cannot wait to hear his voice. I am hoping to take a video and post it sometime tonight or tomorrow for all of you to hear. I will post more about my visit tonight later tonight.

Sunday, January 15, 2012

Preparing to Extubate

Nearly a week after surgery to repair his diaphragmatic hernia, Jude continues to make steady progress.

Here's a quick recap for Sunday:

  • From a respiratory standpoint, Jude continues to make good progress. His blood gases have been fantastic and he's weaned to the hilt on the ventilator, so there's really nowhere else to except off the vent. It's looking like tomorrow may be extubation day for baby Jude! Please pray that Jude will extubate soon and that he'll make a smooth transition to nasal cannulas or whatever form of oxygen support is deemed best!
  • Today was the third day that our little man was receiving bits of his mommy's milk through a feeding tube. He's still receiving milk in very small amounts (2 ml/hr), but these early feeds are tiny because they're primarily intended to help his bowel "wake up" after about 5 weeks of inactivity. He spit up a little bit today, and he had one bilious emesis (i.e. he threw up and there was a little greenish bile in it), but he still is doing reasonably well with digesting his food and moving the majority of it through his bowel. Please pray that Jude's gastrointestinal function will improve and that he won't experience any significant reflux, bowel obstructions, or other complications.
  • We knew that Jude had a little pressure sore on the back of his head, which was probably the result of his head being stationary while on ECMO; however, today the sore opened up and actually bled a little bit. He has been flipped and repositioned frequently since coming off ECMO, but the sore on his head hasn't gone away. He was inexplicably fussy several times during today's visit, and although we weren't initially sure why this was the case, the sore on his head is probably the simplest explanation. It was really sad to see him appear to be in pain, so please pray that his pressure sore will heal as the medical staff tend to the wound.
  • Jude continues to oxygenate his blood well and, since his surgery, his lungs have also done a fantastic job of expelling CO2; nevertheless, pulmonary hypertension is still a concern on our radar. Please continue to pray with us that Jude's pulmonary hypertension will be kept at bay.

I (Brian) will be returning to work on a reduced schedule this week, so I would also ask for your prayer that this transition will be as easy as possible. My tentative plan is to work part of each week in Greenville, then spend long weekends in Charleston with Jude. My hope is that my time in Greenville will be productive, that the Lord will give me safe travel between destinations, and that my time with Jude and family in Charleston will be sweet.


    O you who hear prayer,
        to you shall all flesh come.
(Psalm 65:2)

Saturday, January 14, 2012

1 Month, 1 Week, 1 Day


So, Rose and I continue to be amazed at how well Jude has progressed since surgery on Monday. Having become accustomed to a roller coaster of emotions over the first month, my gut tells me I need to be cautiously optimistic and brace myself for the possibility of something bad to happen. But for 5 days since Jude's surgery, nothing notably bad has happened. No catastrophic events. No major setbacks. Just good, steady progress. We'll take it. Thank you, God. :)

So what was new today?

  • Jude's tube feeding went well today. While he's being given very, very small continuous feeds, his hourly rate was increased from 1 mL to 2 mL/hour this morning, and he seemed to tolerate that well. He spit up once today, but otherwise he held his food down and had smaller amounts of residual, partially digested milk sitting in his stomach at the times he was checked for that today. Please pray with us that Jude's bowel function continues to improve without major problems and that he'll be able to gradually take more and more milk as time passes.
  • Aside from a few tantrums that signaled discomfort (or maybe just normal baby fussiness), Jude was very comfortable today. His pain from surgery has presumably continued to recede and his pain management has apparently gotten better with each passing day. By the time Rose and I left the NICU at 6:45 pm, the only PRN medicine that he had received beyond his normal drips was one bolus of Ativan to help him chill out around midday. That's great! Please pray with us that Jude will continue to remain comfortable as he heals. Also, please begin praying with us in advance that the long, slow process of weaning Jude off all his pain medications will go well when the time begins to do that.
  • Rose got to hold her little man again today! Jude was having a good day, so his nurse and several helpers moved Jude into Rose's lap so she could hold him while seated in a chair. It was so sweet for her to hold her baby boy for the second time! Jude handled being held very well: He was sacked out the whole time. :)
  • And finally, perhaps the most exciting news of the day (drum roll, please): Jude's blood gases were awesome today, and he was weaned on the vent to the point that his doctors began talking about extubation! Praise God! So far, they haven't taken him off the ventilator yet, as they resolved that they want to get one of the vent settings just a little lower first. The fact that we're already talking about extubation so soon after surgery is amazing and feels like such a victory, especially since Jude has been on mechanical ventilation for so long. Also, since Jude has been oxygenating so well, his doctors have deferred on an echocardiogram for a little while longer since there isn't an urgent need to do it at the moment. He will get more, but it might be next week before he receives his next one to check his heart function and pulmonary hypertension. Please pray with us that Jude's respiratory and cardiovascular function will continue to improve so he can come off mechanical ventilation soon!

God has continued to work healing in Jude in amazing ways, and he has been doing so well this week since his surgery. We don't know what His plans are for Jude, but we are so thankful for the miraculous healing and other wonderful works He has wrought since our little man was born. We hope and pray that our Lord will allow continued progress so that Jude can now get back on his feet with the fewest setbacks possible.

Rose and I are so happy and thankful that Jude is doing well at the moment, but our hearts are heavy for those families who have lost children in similar situations and others who are presently struggling as their children are currently in tenuous, life-threatening situations. Tonight, we are thinking about and praying for baby Killian, who is currently battling CDH at Vanderbilt Children's Hospital in Tennessee. You can read more of his story here: http://killiankayne.blogspot.com/.

Good night!






    And this is the confidence that we have toward him, that if we ask anything according to his will he hears us.
(1 John 5:14)

Friday, January 13, 2012

Friday the 13th isn't a bad day when you are hanging out with Jude!

Hi friends!
Brian and I are hoping to go to bed soon and get some rest but we wanted to give you a quick update on Jude's day.
  • The medical team continues to make changes to Jude's settings on the ventilator and he continues to handle the changes well. His blood gases today were all good too! Please join us in praying that Jude's blood gases continue to please the doctors and please pray that he will continue to be able to take steps towards coming of the ventilator. Please also pray that Jude's lungs will continue to open up and that the fluid on his lungs will continue to come off. Please pray specifically that he will not have any set backs.
  • Today Jude's stomach drain was removed and Jude started receiving very small breast milk feeds (through a tube in his throat) to see how his digestive system will handle it. Keep in mind that Jude has not had any food in his digestive system since birth. He only received nutrition through his IV and his mouth was swabbed with breast milk to give him access to antibodies. The hope is that these small feeds will wake up his little system and get it started in the right direction. We will find out more about how Jude handled his feedings in rounds tomorrow. Please join us in praying that Jude's little system is happy to welcome mommy's milk!
  • Jude has lost quite a bit of the fluid weight that he put on as a result of his surgery. He is considerably less puffy today. It's great to see our little man getting closer to his normal size again!
  • It also appears that Jude's pain is more under control. He is only receiving pain medication through his drips and he is not requiring any of his PRN pain meds. We are SO happy to see that he is in less pain and that he is not requiring more medication. He is not as sedated and was looking around quite a bit today and this evening. Please continue to pray that Jude is comfortable and pain free.
  • Jude should be receiving an echo-cardiogram sometime this evening. The results from this will give the doctors a better idea of the presence or lack of  pulmonary hypertension. Please join us in praying that he will be completely healed of his  pulmonary hypertension.
  • Brian held Jude for the first time today!!!!! That is a HUGE praise! We are so thankful that the Lord provided a way for this to happen! I (Rose) did not get to see Brian hold Jude (I was out sick for the day) but the nurse took pictures for me. I will post them tomorrow for all of you to see. Brian said that Jude fell asleep eventually and that it was so great to snuggle his little man. 
Honestly, we are quite in shock over how well Jude has done since his surgery. Jude's journey over the last month (and a week) has been especially tough for our little man. He has endured quite a bit. It's been such a rough ride that we are having a hard time allowing ourselves to believe that he is on the other side of his CDH repair and that we can breathe a little. We have no idea when Jude will be "out of the woods". We are trusting in the Lord and remaining hopeful. We are certain with all of our being that the Lord has been present at all times and that he has carried us through. He has loved Jude every step of the way. We are continually thankful for the Lord's love.

I have a favor to ask of all of you. Today, I was made aware of a sweet little boy who is enduring a tough medical journey and it seems that he may be at the end of his journey soon. Since we learned about Jude's CDH we've become more aware of the many medical problems that little babies can face and this sweet little boy has traveled a long journey battling Junctional Epidermolysis Bullosa. Will you join us in praying for Tripp, his mother and his family? I know that they need our prayers and I know that they need to know that the Lord is with them at all times...especially right now. Here is a link to their blog: http://randycourtneytripproth.blogspot.com/

Fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.
(Isaiah 41:10)


Thursday, January 12, 2012

Day 3 Post-Op: A Quick Update

Here's a quick rundown of the day's happenings, folks:

  • Jude continued to have good blood gases the few times that they were tested today; consequently, he was weaned a little bit on his ventilator settings. Praise God!
  • His chest tube, urinary catheter, and femoral venous catheter were all pulled today, and in place of the femoral line he got a midline catheter inserted on the right side of his head. So that's three things out, one thing in. We're cool with that!
  • Jude's x-ray from this morning was still hazy, so he got more doses of Lasix today to help with getting rid of the extra fluid. Lots of peeing going on over here.
  • His pain seemed to be under much better control today. That was awesome, considering how much pain he's been in recently. He snoozed quite a bit while I (Brian) was with him today, but he did wake up a few times just to look around. We read books together! :)
  • Jude had another poopie diaper today! Actually, he's had a number of them since he's been born, but he's had, like, 3 poopies in the last 24-36 hours, which I believe is a good sign of bowel functioning. Getting little bits of breast milk through a feeding tube may soon follow!

While we pray for God to heal Jude and continue to accomplish His plans through him, will you also pray with us about these specific things, please?

  • Jude's fluid management. His hazy chest x-ray signals fluid retention, which has been expected but nonetheless needs resolution. Please pray that it will get better and that the doctors' interventions will be successful.
  • Weaning on the ventilator. No one wants Jude on any kind of mechanical ventilation longer than is necessary, as it can (and does) injure patients' lungs to varying degrees, especially when used for long periods of time. The medical staff follow "gentle ventilation" protocol to minimize any damage to Jude's lungs, but please pray for Jude to have increasingly better gas exchange in his lungs so he can wean and get off the vent as soon as possible.
  • Jude's heart function and pulmonary hypertension. He should get an echocardiogram either late tonight or tomorrow morning, so we're told, and the results will give us an update on Jude's heart function and pulmonary hypertension. (Side note: Jude's heart is still more on the right side of his chest and hasn't moved to the left side yet.) Please pray for his little heart and the vessels in his lungs, that they will be healthy and work properly.
  • Jude's stomach and bowel. He's almost 40 days old now, and he hasn't really used his stomach and bowel yet, and things can get a little sticky when organs aren't used over time. Please pray that his GI tract responds well to stimulation through trophic feeding, and that he won't have any other issues with digestion (e.g. bowel obstruction).
Rose and I still don't feel 100% well, as we've both been down with a little illness. Please pray for our quick recovery (particularly for Rose) so we can see our little man without putting him at hazard for germs.

Thank you very much for reading and for interceding on Jude's behalf. Good night!

Wednesday, January 11, 2012

Day 2 Post-Op

So far, today has been a reasonably good day for our little man, and we're very thankful for that! He's still in a lot of pain, but Jude's nurse and the doctors are staying on top of it with pain medication. The pain should hopefully begin to recede as time goes on, and we're praying that God would hasten that process as much as possible. We hate to know that our little man is in so much pain, especially after all he's been through already.

Throughout last night and today, Jude's blood gases have been good. Praise the Lord! Pray with us that he'll continue to oxygenate well and get rid of his CO2.

Also, please pray that Jude's progress with ventilation will progress as rapidly as possible so he can get off mechanical ventilation. The longer he's on the ventilator, the more damage his lungs will incur. His ventilators have helped preserve his life, but mechanical ventilation can slowly injure a baby's lungs, and Jude's lungs are already in a sensitive state because of his diaphragmatic hernia.

The x-ray from this morning showed increased haziness, which points to fluid retention. However, since Jude was given a dose of Lasix late this morning, he's responded very well, putting out about 400 cc of urine! We're thankful that he continues to respond well to this diuretic, and we ask for prayer that Jude's urine output would continue to be good and that his pulmonary edema and other fluid accumulation would get better.

This morning in rounds with Jude's doctors, the topic of when to begin giving him breast milk through a feeding tube came up for discussion. Jude needs to pull through this bout with post-op pain first, but we're thankful that our little man isn't too far from hopefully getting his first "taste" of his mommy's milk! Jude's little stomach and intestines haven't been used during these first 37 days of his life, so it's time to get those organs and their muscles working! While we're excited about this, we're anxious because CDH babies typically have issues with reflux, and they sometimes have other problems with their gastrointestinal system. Moreover, in Jude's case, his bowel is a big, tangled mess because of all the adhesions within it, so there's a slight possibility of a bowel obstruction either now or in the future. Please begin praying with us that Jude's process of learning to eat and digest his mommy's milk and other food will go well, and that he won't have significant problems.

I've been sick for the past few days, and unfortunately Rose is now under the weather, too. It appears that she came down with the same symptoms I've had. Please pray for our quick recovery so that we can rejoin our baby boy at his bedside.

Praise the Lord for another good day!



    Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing praise. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Therefore, confess your sins to one another and pray for one another, that you may be healed. The prayer of a righteous person has great power as it is working. Elijah was a man with a nature like ours, and he prayed fervently that it might not rain, and for three years and six months it did not rain on the earth. Then he prayed again, and heaven gave rain, and the earth bore its fruit.
   
(James 5:13-18)

Tuesday, January 10, 2012

Resting...

Today was a day of rest for Jude. The doctors wanted to focus on keeping Jude comfortable and resting now that he is recovering from his surgery. Since last night Jude has been in quite a bit of pain so the nurses and doctors have been watching him closely to try to find the right dosage to keep Jude comfortable.
Jude's nurse, Leslie, took wonderful care of him today and she was very attentive to his needs. We are so thankful for Leslie. She has been Jude's nurse several times since Jude's early ECMO days. After following him closely it seemed like Leslie found a "happy spot" for Jude's pain medication and Jude slept for 2.5 hours! After his little snooze he woke up calm and was looking around. It made me so happy to see him relaxed and awake.
Jude's settings are similar to the settings that he was on before surgery. They are not "weaning" him from the ventilator just yet. Right now they want to provide him with plenty of time to rest.

Here is what you can pray for:
1. Comfort for Jude- Please pray that Jude is free from pain as much as possible. Please pray that his doctors and nurses will be extra vigilant in observing is Jude is experiencing pain.
2. Rest - Pray that Jude has plenty of opportunities to rest in the next several days. It can be tough for anyone to rest at the hospital!
3. Jude's lungs- Now that Jude's CDH repair has been completed we begin the waiting game to see what Jude's lungs can do. Right now the focus is on healing and resting but soon they will start challenging his lungs. Please pray that his lungs will "grow" and strengthen enough to give Jude what he needs.
4. Pulmonary hypertension - Please continue to pray that Jude does not encounter this problem again. At this point, there is no indication that he is being plagued by pulmonary hypertension but it could happen. Please ask the Lord to spare Jude from this medical problem.
5. Please pray for Brian- He is quite sick and spent most of the day in bed. He is on antibiotics and is doing his best to rest as much as possible. Please pray that he will be healed soon.

Update: I just called and spoke to Jude's nurse (at 9:45pm) and she said that his blood gases were beautiful and that he has been resting well the whole evening! So thankful for this report!

    But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.
(2 Corinthians 12:9 ESV)

From Jude's mommy with pictures and videos!

Hi friends,
First of all I want to share the pictures and videos of me holding Jude that I promised you. Here are a few:
 The moment they placed him on my chest.
 Family picture! (Brian is wearing a mask because he was starting to feel a little off and he wanted to be extra careful around Jude)
 My sweet snuggly son.
 Our nurse, Caroline, gave us a mirror so that we could see Jude's sweet little face while we were snuggling.
 I truly wish that I could have held him forever!
After a month of waiting the Lord provided a way for me to hold my precious baby. :)

And a video for you to enjoy too! As soon as they placed Jude on my chest he started looking around trying to see me because he heard my voice.
I wanted to share with all of you just how truly amazing it was for us to know that so many of you were praying and asking the Lord to care for Jude and our family yesterday.

Because we knew that Jude's surgery would take quite awhile (they estimated around 3 hours) we walked down to the cafeteria to get a quick breakfast (because we'd missed the chance to eat from rushing to the hospital because his surgery had been moved from 1:30pm to 9am). When we returned from breakfast and walked into the surgery waiting room Jude's neonatologist and nurse, Joan, were standing at the door waiting on us. Their faces were white and their eyes were filled with tears. I truly thought that I was going to pass out because I was so afraid of what they might be about to tell me.Brian was not with me at this point because he had gone to the pharmacy to pick up some medication for a headache.

We walked over to a corner in the waiting room and they explained that when they opened Jude up for his CDH repair that they discovered something very troubling. And as Brian explained in the previous post his intestine was obstructing the surgeons view of Jude's diaphragm because of all the adhesions.  (Brian joined us shortly after they started explaining everything) Jude's doctor explained with tears in her eyes that fixing this problem was extremely risky and that Jude was at great risk for major bleeding which could take his life. We were floored and scared.

After the doctor and Joan left, we took a few minutes to process the news we'd just been given. We knew it would mean hours of surgery for Jude. Then Brian and my dad started the process of letting all of you know how you could pray for Jude and our family. And we felt your prayers with us. We received so many uplifting messages and found out that an emergency prayer service had been arranged for Jude at our church. We were COVERED in prayer. Thank you.

After more time passed and we received an update from Joan mid-surgery, Brian and I went to the chapel to pray together. Just as we walked out of the chapel Joan was coming around the corner to find us...but this time her eyes were lit up and she had a smile on her face. "They are finished!" she said. We were in shock. It had only taken a few hours for them to finish and Jude's surgery was successful in repairing his CDH.

The Lord is good. He has answered our prayers once again. We feel blessed and overwhelmed by the countless ways that the Lord gives each of us what we need when we call upon Him. He has spared Jude's life three times in ways that we could never have imagined. Blessed be the Lord.

Please continue to keep Jude in your prayers. He is in a great deal of pain right now and he still has a very long journey ahead of him. His life is still at risk and honestly I'm not quite sure when we will really know when he is out of danger. CDH is a terrible defect.

I've been spending the day with Jude alone today because Brian is sick again. This time he has a fever. So please lift him up in prayer for healing so that he can get by Jude's bedside again. Thank you sweet friends!

Monday, January 9, 2012

More Info On Jude's Surgery

So I imagine some of you may be curious about the particulars of Jude's surgery and exactly what the doctors found once they opened him up. Although my medical knowledge is extremely limited and we are still a little unclear on the sequencing of a few things ourselves, this is the gist of what we know:

In a nutshell...

Jude's surgery was done through two surgical sites: An abdominal incision was made on his left side, and a second incision was made on the left side of his chest. The organs that were in Jude's chest at the time of surgery -- the bowel and part of his liver -- were moved down into his abdomen, and the hernia in his diaphragm was repaired. As we were told, the right side of Jude's diaphragm was intact, but there wasn't much on the left side. There was only a small band of diaphragm tissue on the left side, but by stretching it and also using a biological AlloDerm patch, the surgeon was able to close the hole. A chest tube was inserted into the left side of Jude's chest to drain fluid that will accumulate post-operation, the surgical sites were sutured, then he was brought back up to the NICU.

A more detailed account...

As indicated in a post earlier today, when the surgeon began the procedure, he discovered that Jude's bowel was matted and fused together by adhesions, which are bands of tissue that can connect loops of the intestines together, or to other organs or the abdominal wall. The surgical team was reportedly distressed by this finding. Attempting to disentangle the bowel by pulling or cutting the adhesions would certainly have caused bleeding, which could have been fatal to Jude, so the surgeon would later move the bowel down below the diaphragm as it was. (The adhesions may have fused the bowel to some other surrounding tissues, but we're not 100% clear on whether that was the case.)

There are a number of things that can cause adhesions to form, although abdominal surgery is the most common culprit. In Jude's case, the infection and subsequent inflammation that recently occurred in his abdomen, and more specifically in his peritoneal cavity (i.e. peritonitis), is what we understand to be the likely cause of all the adhesions among his bowel.

Several weeks ago, when Jude's umbilical venous catheter eroded and deposited his IV nutrition and intralipids (fat emulsion, which is part of Jude's "diet") into the peritoneal space along his abdominal wall, the fluid actually traveled up into the pleural space along his chest wall, too. (I'm unclear on whether the bowel actually came into direct contact with this fluid, but perhaps that's beside the point.) Because of this accumulation of foreign fluid, his abdomen became inflamed and distended, which probably spurred the creation of the adhesions along the bowel.

At the beginning of the surgery, the surgeon apparently couldn't even get a clear look at the diaphragm from the vantage point(s) available to him at that time: Between the bowel and Jude's enlarged liver, his view was effectively blocked. (Side note: Jude's enlarged liver was not unexpected, as the surgeon told us that most patients that go on ECMO have liver enlargement.)

At this point, it sounds like the surgery slowed down considerably, as the team recognized that they needed to take a few additional preparatory steps before they proceeded any further. Additional units of blood were ordered, additional catheters were inserted (I think) to offer additional lines of access, and antibiotics were ordered. The antibiotics were readied because the surgeon found evidence of infection in Jude's peritoneal cavity. This infection wasn't in his bloodstream, so he wasn't septic, but it needed to be flushed and beginning treatment with antibiotics was in order. (A tissue sample was taken and cultured, which grew a gram positive cocci very quickly. This might be a lingering trace of the staph aureus bug that Jude was treated for previously.) Jude's neonatologist and his nurse sought us out in the surgery waiting room to tell us about the situation, i.e. that it was very serious and that the surgery would probably be much longer than the 2-3 hours originally expected. At approximately 11 am, the surgical team got started again.

Around 11:30 am, I called Jude's nurse, and she indicated that things were going well, as indicated in my earlier post. Jude was weathering the surgery well: He was stable and he hadn't lost a lot of blood. The part of Jude's liver that was in his chest had already been moved back down, and the diaphragm was beginning to come into view.

After the bowel was moved down, the surgeons were able to turn their attention to repairing Jude's diaphragm. Upon closer inspection, they noticed that there was a strip of diaphragm tissue on the left side that they would be able to work with. They stretched the tissue across part of the defect, then they used a biological patch called AlloDerm to close up the remainder. Another kind of patch called a GORE-TEX patch would have been used, but the surgeon indicated that particular patch could hold onto bacteria from the infection in Jude's peritoneal cavity, so he decided on the AlloDerm, which apparently was the safer option and would be more conducive to treating the remaining infection in Jude's abdomen. The only concern is that whereas the GORE-TEX patch is permanent, an AlloDerm patch can disintegrate over time and potentially put Jude at risk for reherniation. Our hope is that scar tissue will slowly help close the space that's presently occupied by the patch and that we won't ever have to worry about reherniation in the months and years to come.

Also, at some point during the surgery, a chest tube was inserted in or near the incision on Jude's chest, which will drain fluid as it accumulates in his chest in the days to come.

Amazingly, the surgery was over after roughly an hour and a half! The surgeon deferred on trying to disentangle Jude's bowel because of the high risk of bleeding, so that shortened the surgery a bit. However, when the surgeon talked to us after the procedure, he joked that he also had his "A-Team" during the surgery. He apparently called several other physicians to provide various kinds of assistance, and another pediatric surgeon scrubbed in to help, too. In short, Jude had a lot of talented people taking care of him. :)

Now that Jude is back in the NICU, as indicated in a previous post, he'll have a number of additional hurdles to clear. In the next day or two, pain management and fluid management may be the biggest issues. The specter of pulmonary hypertension is still lurking as well, and although the evidence up to this point has suggested that it has largely improved since  Jude went on ECMO, we're continuing to pray that it'll be kept at bay and that he will be protected from it. We'll keep everyone posted on Jude's condition as he now starts on the road to recovery following surgery.

Rose and I continue to be amazed at how God is working through this situation. As a friend reminded us today, the Lord has plans for Jude that will be accomplished, and even though we love our little man so intensely, He loves him more than we ever could. We pray that these truths will be written on our hearts as continue to move forward, regardless of how things work out.

Thank you all so much for your prayers today. We know that our God hears our prayers, and from what we can gather, there must have been thousands of people on their knees praying for Jude's healing and for God's glorification through his little life. It's humbling that God would lay our son and his welfare on the hearts of so many. In addition to the miraculous ways in which God has worked healing in Jude, He has been SO good to us through the love and fellowship of others -- our families, our brothers and sisters in Christ, friends old and new, coworkers and customers, doctors and nurses, acquaintances and those who do not even know us personally but who pray for Jude nonetheless. God has been exceedingly generous to us through others, blessing us materially and spiritually beyond belief.

Now, at the end of such a long and emotionally exhausting day, we're hoping to get some rest. Thank you all again for your prayers and support. And thank you, God, for your grace. Through the gospel of our Lord Jesus Christ, You have rescued us and set us on solid ground when all other ground is sinking sand and our circumstances are so overwhelming. Help us keep our hope only in Jesus and in nothing else as we move forward.

    And we know that for those who love God all things work together for good, for those who are called according to his purpose.
(Romans 8:28)

    Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.
(Hebrews 12:1-2)





Out of Surgery!

I'll hold off on a more detailed post until later, but Jude is out of surgery and back in the NICU! It reportedly went much better than anyone expected.

More to come! Praise God!

Surgery Update: 11:30 am

I just got off the phone with Jude's nurse. The surgeons stopped the procedure after they discovered the problem with his bowel, regrouped, put in a femoral catheter, ordered extra units of blood and other things they would need, then they began again about 30-45 minutes ago, I think.

As of 11:30, Jude was still stable, he hadn't lost any more blood than is to be expected with his surgical repair, his liver had been moved (it may have been in his chest after all, although we're not certain), and the surgeons were beginning to look more closely at his diaphragm, which was coming into view. Jude's nurse said that it looked like there was, in fact, some diaphragm, but they hadn't been able to get a good look yet.

We're happy about this first report, but the surgery is probably going to last a long time, so we're trying to pace ourselves as much as we can. Please continue to pray with us!

Urgent Prayer Request -- Problem in Surgery

Folks,

Rose and I just got some very troubling news, and we ask that you join us in pleading God's mercy and healing for Jude.

After the surgeon opened up Jude, he found "the worst thing he could have found:" Because of Jude's recent peritonitis, Jude's bowel is matted and fused together, and his liver is enlarged. The surgeon is going to attempt to unravel his bowel and organs, but he is very worried about bleeding from the blood vessels caught up in his organs there. As yet, he can't even see Jude's diaphragm to determine how big the defect is.

This is extremely serious and life threatening. It's not certain whether the surgeon will be successful in what he now has to do. Jude's specific problem and circumstances leading up to now are very unique, and it sounds like the surgeons have never seen anything quite like this before. The procedure will now take much longer as the surgeon begins the tedious work of gently pulling apart his organs.

Please, please join us and pray for Jude's healing. We know that so many of you have already been in prayer for him, and we are so very thankful. We know that God can work miracles, and Jude needs one.

This story has stuck with me since our pastor mentioned it in a sermon some time back:

    And they came to Jericho. And as he was leaving Jericho with his disciples and a great crowd, Bartimaeus, a blind beggar, the son of Timaeus, was sitting by the roadside. And when he heard that it was Jesus of Nazareth, he began to cry out and say, “Jesus, Son of David, have mercy on me!” And many rebuked him, telling him to be silent. But he cried out all the more, “Son of David, have mercy on me!” And Jesus stopped and said, “Call him.” And they called the blind man, saying to him, “Take heart. Get up; he is calling you.” And throwing off his cloak, he sprang up and came to Jesus. And Jesus said to him, “What do you want me to do for you?” And the blind man said to him, “Rabbi, let me recover my sight.” And Jesus said to him, “Go your way; your faith has made you well.” And immediately he recovered his sight and followed him on the way.
(Mark 10:46-52)




Jude's Surgery Moved Up to 9 AM Today!

We got a call from the NICU about 30 minutes ago indicating that Jude has been moved up to be the surgeons' first case of the day, so he'll be taken down to the OR around 9 AM and the surgery will begin soon thereafter.

We were surprised that Jude's surgeon decided to make this last minute change, but hopefully it will be to his benefit. We are scrambling to all get ready and head down to the hospital, but I wanted to take a moment to let you all know what's going on.

Please pray for our little boy and the medical staff who will be performing the surgery. May God's healing hands continue to rest on our little boy and may He give the surgeons and other staff wisdom and skilled hands to lovingly care for him as they attempt to mend his little body.

Sunday, January 8, 2012

Surgery Tomorrow -- Prayers Requested (and a little bit of snuggling)

As we prepare to start a new week and cross off another day at the beginning of Jude's second month of life, we're preparing ourselves (as much as we can, I suppose) for his surgery, which is scheduled for 1:30 pm tomorrow afternoon. It's hard to believe that more than a month has passed since he was born and that he's had to endure so many difficulties and setbacks to make it to his surgical repair, but the Lord has done amazing things as He has accomplished His plans for Jude along the way, and we're confident and hopeful that He will carry Jude just as well through surgery and its aftermath.

So what will tomorrow look like?

Although we understand that it's possible to perform surgical repair for a diaphragmatic hernia laparoscopically (i.e. via small incision(s) that are minimally invasive), Jude's surgeon has determined that instead he will open him through a large incision on his torso and manually move the abdominal organs in his chest down into the areas where they should be. He may or may not have tubes or drains inserted to relieve his body of excess fluid. Jude will be on a ventilator for the duration of the surgery, and he'll be given both anesthesia and a paralytic drug, which will render him motionless for the procedure. After surgery is over, he'll be brought back up to the NICU to recover.

Post-surgery, here are some issues that Jude and the medical staff may or may not have to contend with, so Rose and I ask for your prayer for them:

  • Jude will be given a lot of fluid during surgery, and he'll probably take fluid on board as his body reacts to the surgical trauma, so fluid management will be a big issue that the medical staff will need to deal with in the days and/or weeks to come. If you've been following this blog for a while, then you probably know how fluid can put pressure on various organs and thus hinder their functioning. We're praying that any extra fluid he retains won't put inordinate pressure on the surrounding tissues or organs, and that it won't restrict his blood flow to any parts of his body.
  • Although Jude has already weathered a lot of pain as a result of medical problems or procedures, his surgical repair will probably be the most painful thing that he'll have to endure while he's in the hospital; consequently, the medical staff caring for him will have to be very vigilant and careful as they manage his pain post-surgery. Jude has already been on morphine (narcotic for pain relief) and Versed (sedative) drips for about a month, and he has received boluses of both of those drugs plus lorazepam (anti-anxiety drug) periodically as needed. Because he's been on morphine and Versed for so long and his dosages have been steadily increased, he has developed a tolerance to those medications, which may make using them for pain relief/sedation more difficult. Jude has yet to really receive much fentanyl, a powerful synthetic narcotic that's much more potent than morphine, so that may come into play as needed. We're praying that the Lord would minimize his pain as much as possible, that he would give wisdom to the medical staff as they determine which drugs to use for pain, and that the drugs would be effective in regulating his pain levels.
  •  Although recent echocardiograms have revealed very little evidence of pulmonary hypertension, we know that it can present again post-surgery. If it does reappear, then it could pose another obstacle to Jude's recovery. We're hopeful, however, that the scant evidence of pulmonary hypertension in recent tests portend good things for Jude, and we're praying that it won't reappear or, if it does, that it is manageable.
  •  Because Jude's bowel (or much of it) is in his chest and will need to be moved back to it's rightful place there is potential for trauma to his bowel which could result in gastrointestinal issues in the future. We are praying the Jude's bowel will endure the surgery and placement with no issues and that if there are issues they will be minimal.
  • As with any surgical procedure, there are risks to Jude and his life. We are praying that the Lord will carry Jude through his surgery with no problems and that his vital signs will remain healthy and strong.
  • After Jude's organs are moved to the appropriate places we are hopeful that his lungs will spread out and open up to be used at their full potential. We are praying that Jude's lungs will be larger and healthier than expected. We are praying that his lungs will be just the right size for sustaining Jude.
Please also join us in praying for everyone involved in Jude's medical care tomorrow. We are praying that they will have plenty of rest this evenings, sharp minds tomorrow, and steady hands during surgery. We are praying that the Lord will give everyone a peaceful state of mind throughout the procedure so that they can make the best choices for Jude and his little body.

Now on to the snuggling! (from Rose)
A few days ago we were told that if Jude was able to get onto the conventional ventilator then I might have the opportunity to hold him. When Jude surprised us with the switch yesterday I was hopeful that I might have the opportunity to hold Jude, but I wasn't quite sure if the doctors would allow it. This morning in rounds the docs gave the "ok" for me to hold him for a few minutes as long as he handled it well and as long as his stats remained steady.

So, this afternoon I sat on a big comfy chair and held my sweet son for the first time. What an amazing moment! Jude was so snuggly and so comfy on my chest that he had the best of his best CO2 levels for the day! It made me so happy to know that he was so peaceful laying on my chest. He was doing so well, in fact, that I was able to hold him for three hours! I would have held him even longer if I could have!

I am so thankful that the Lord provided a way for me to hold Jude before his big surgery tomorrow. My heart is so full this evening! We took MANY pictures and videos of our snuggling session and we hope to post a few tomorrow afternoon as we sit in the waiting room during Jude's surgery.

Thank you for your prayers for Jude. Tomorrow is such a big day but I feel more confident knowing that the Lord is with Jude and that so many of you are praying. We will update you on how he is doing as often as we can.



    Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.
(Matthew 6:34)

Saturday, January 7, 2012

Out With the Oscillator, In With the Conventional Vent!

Apparently, Jude was done with the oscillator today: Throughout the morning, he was breathing over the vent a lot, he was seriously distressed (i.e. making the "crying face," flailing, elevated vitals), and his blood gases were getting steadily worse, with his CO2 levels continuing to climb. His chest x-ray revealed some lung collapse on the right side and some persistent pulmonary edema. At this point, the medical staff began to consider that perhaps Jude was trying to tell them that he didn't "like" the oscillator anymore and was ready to move on to the conventional ventilator. Their suspicion turned out to be right!

Around midday, Jude was switched over to the conventional vent, and he adjusted to the change very well. As the afternoon wore on, his blood gases looked a lot better, and the gas readings became much more consistent with minimal variance. And finally, after several days of appearing to get very little rest, he sacked out. He was even sucking on his gastric suction tube while he was sleeping. :)

We're so thankful to God for this move in the right direction, and, of course (!), we never would have anticipated that it would happen in this way. Please join us in praising God for what is shaping up to be a good day, and please continue to lift Jude up with us and ask our Lord that He will protect him over the next two days and prepare him for surgery on Monday.



    Bless the LORD, O my soul,
        and all that is within me,
        bless his holy name!
    Bless the LORD, O my soul,
        and forget not all his benefits,
    who forgives all your iniquity,
        who heals all your diseases,
    who redeems your life from the pit,
        who crowns you with steadfast love and mercy,
    who satisfies you with good
        so that your youth is renewed like the eagle's.
(Psalm 103:1-5)

Friday, January 6, 2012

Pray, pray, pray! (and updates)

Hi friends,
I wanted to ask for your prayers tonight again for Jude. You've all been so faithful to pray for our little guy.
This afternoon (after we left the hospital for the day) we called to check on Jude and see how his blood gases were looking. Jude's gas at around 4:30pm was a little high on the CO2 side...a little concerning but his CO2 can be a little high when he is agitated. Jude's nurse told us that she was going to get another gas at around 6:30pm and that we could call back and find out the results. At 6:30, his CO2 was even higher. Quite concerning. At this point they are not sure why his CO2 is higher but they are working to find out. His most recent x-ray suggests that one of his lungs might have collapsed just a little and that he continues to have the pulmonary edema that has been hanging around for quite some time.

The nurse told us that at this point the plan is:
1. Go up a little bit on his settings on the oscillator to support him a little better.
2. Give another dose of lasix to help get more fluid out of his system.
3. Continue to suction him often because they are getting some secretions from his lungs.

After we put Annabelle to bed Brian decided to head back up to the hospital to get a better picture of what is going on with Jude and to see what the plan seems to be. It's nice to be able to call Jude's nurse and get updates but it is even better to be able to physically be there with him as doctors/specialist visit.

What you can pray for:
1. That Jude's CO2s will go down instead of up. Pray that his gases will return to a healthy place and that they will remain there until surgery on Monday.
2. Pray that his lungs will open up and remain open until surgery on Monday.
3. Pray that all of the measures that the doctors are taking to help Jude with his recent problems will be effective.
4. Pray that Jude will be ready for surgery on Monday.
5. Pray for us as we ride through the many ups and downs that we are facing. We found out this afternoon that Jude's surgery is scheduled for 1:30pm on Monday. We are struggling a little tonight because we feel SO close to Jude's CDH repair and we are hopeful that this is not another major setback.

Please lift Jude up in prayer tonight and please continue to share his story and our prayer requests with your friends and family. We are so thankful for your desire to take your prayers for Jude's little life to our Father.

We will try to update you on Jude's status tonight after Brian gets back from the hospital.

    For where two or three are gathered in my name, there am I among them.”
(Matthew 18:20 ESV)

UPDATES:
8:50pm - Brian just called and let me know that the medical staff is taking all precautions to make sure that they are aware of any problems that may be going on with Jude. They are taking blood cultures to find out if there is any chance of infection. The good news is that the last gas that they took was "beautiful" according to the nurse. Please pray that the next gas that they take is "beautiful" as well and that they continue to be "beautiful"! I will update again when he calls.
10:30pm - This gas wasn't a good one. Jude still has high CO2 levels. He is quite agitated and can't seem to get settled. They put him on antibiotics to be safe too. Please continue to pray for his gases to improve.  They will check another set of gases at midnight to see if he has improved after some of the changes they made since the last one. (his positioning and suctioning out his airway)

Thursday, January 5, 2012

Stable and Looking Toward Surgery Early Next Week

Presently, Jude is stable on the oscillator. The medical staff are still working on weaning him on the vent settings, but they're doing so conservatively in order to minimize the risk of lung collapse or otherwise compromise the progress that he's made. It feels like we're in a holding pattern as we wait for surgery early next week (per the attending neonatologist), but we know that each day is one that the Lord has made and has its own purpose.

We're thankful today that the Lord has continued to preserve Jude, and we pray that He would continue to do that. We know that God is already accomplishing amazing things through his life, even as a newborn. Please join us in praying that Jude's little body will remain healthy and free from illness or infection until his surgery early next week.

Trust in the LORD with all your heart
   and lean not on your own understanding;
 in all your ways submit to him,
   and he will make your paths straight.
Proverbs 3:5-6


As promised!

 As promised, here are a few photos of Jude sleeping on his tummy and a video of Jude awake and alert. You will be able to hear the oscillator running in the background. We truly love our sweet little guy!


Wednesday, January 4, 2012

Prayers for others

Hi friends,
It's late...and I am supposed to be in bed. But just before I finished my nightly routine I felt like the Lord brought two things to my mind tonight to pray for and I wanted to share them with you all. I apologize if my writing is sub-par this time around...I'm so tired.

Since we've been regulars in the NNICU and the family waiting room we've met several families with children who are also very sick. Each day we meet new families with babies and children that are facing tough journeys. We've witnessed some very difficult times in the lives of the people around us and our heart breaks each time we hear about a baby or child's struggle to get healthy and go home. Will you also pray for these families when you remember Jude in your prayers? My heart aches for the challenges and pain that so many of these families are weathering. Pray that they can have peace, wisdom and strength to endure each day.

And secondly, will you all lift up a prayer of thanksgiving for the amazing nurses that we've come to love during Jude's times at MUSC? They've become such an amazing support system for Brian and I...and they provide such amazing care for Jude. When Jude was on ECMO he had nurses that were ECMO specialist exclusively and now that he is off of ECMO he has several different nurses. But the ECMO specialist nurses continue to check in on Jude by visiting him and calling to see how he is doing. It has truly touched us how much they've taken to our little guy. We are thankful that the Lord placed these ladies (and one man!) in Jude's life (and ours)!

That's all for now....until tomorrow!

P.S. Jude's last blood gas at 10pm was good. Thankful for good news before I go to sleep!