Monday, April 30, 2012

Post-Op Praises

It's been said in previous posts, but it's worth saying again and again: Praise God for carrying our little boy safely through surgery today! The Lord has performed many wondrous works in Jude's life just in his nearly 5 months that he's been with us, and it's been exciting, humbling, jarring, exhausting, and sublime to have a front row seat for it all. Thank you to all of you who have accompanied us on this journey with Jude. Whether you've been following him and his progress for hours, days, weeks, or months, Rose and I are thankful that our son and his welfare have been on your heart.

After a long day, Jude is resting and unconscious. He's under heavy sedation and paralysis from several different drugs, and he's still on a conventional ventilator. His surgeon wants him to remain generally immobile over the next few days as he begins to heal from the surgery, which is why a paralytic drug, vecuronium, is being given to him. Jude's hernia repair was done via thoracotomy, an incision in the chest that can be extremely painful, so his sedation has been notably increased to make him comfortable. A tube was also inserted where the chest incision was made, which is draining both air and fluid from the pleural space in his chest cavity.

Rose and I caught up with Dr. Hebra late this afternoon and had a really quick conversation with him. In short, Jude's surgery went as well as we all could have hoped. If my recollection is correct, Dr. Hebra confirmed that his bowel (small and large), stomach, spleen, and the left lobe of his liver were in his chest cavity. With so much stuff in his chest, it seems truly amazing to Rose and me that Jude wasn't in even more pain/discomfort than he seemed to experience. As with his first hernia repair surgery, Jude had a great team caring for him today: Three pediatric surgeons (Drs. Hebra, Streck, and Cina), a senior anesthesiologist, and other medical staff all contributed in some form to Jude's procedure. Rose and I are so thankful that God allowed so many skilled professionals to come together in order to care for our little boy, and we're particularly thankful today for Jude's nurse, Lesley, and his surgeon, Dr. Andre Hebra.

A few interesting things were recounted to us by Dr. Hebra and by the other staff who visited us periodically during Jude's surgery:

First, Jude's adhesions (bands of scar tissue) in his chest were not nearly as bad as we all thought they might be. Praise God for this blessing! While there was some scar tissue between the abdominal organs floating in Jude's chest cavity and his lungs, the amount was small enough that Dr. Hebra apparently didn't have considerable difficulty in separating the organs from the lungs and moving them back down into his abdominal cavity. That's awesome!

Second -- and this one is so exciting to me -- Dr. Hebra made a happy discovery once he had a look at Jude's insides: There was a small bit of scar tissue beneath his heart that was perfect for suturing the GORE-TEX patch on that side of his defect. This bit of tissue was not expected; rather, Dr. Hebra thought that he might have to stitch the GORE-TEX patch onto the pericardium, which is the membrane/sac on the outside of the heart. The fact that he didn't have to do that and that a stronger, more conveniently located tissue was present so that Dr. Hebra could secure Jude's patch on that side was amazing. No one saw this coming, but all we can do is praise God and thank Him for this unexpected mercy!

Third, Jude was rock solid throughout the surgery. His vital signs remained stable, his arterial blood gas analyses (tests that determine the pH, oxygen, and carbon dioxide levels in Jude's blood) were great, and he lost relatively little blood. Praise God for keeping our little boy steady through so much trauma!

The major challenge over the next few days, as we understand things, is to manage Jude's pain. As indicated above, Jude's chest was opened through an incision, and a lot of tissue had to be cut in order for Dr. Hebra to gain access to his chest, and that included cutting through muscle. Over the last 5 months, Jude has built up a bit of a tolerance to some of the drugs that he's presently receiving, and he's also grown to more than 15 pounds -- up more than 7 pounds from his birth weight; consequently, he will need quite a lot of sedation in order to remain comfortable and avoid distress. Please pray with us that the Lord would keep Jude's pain far from him and that he would remain stable and comfortable in the coming days.

Another area of Jude's care that will receive quite a bit of attention in the days to come is his respiratory status. Right now, because Jude is paralyzed and unconscious, he is being mechanically ventilated, i.e. a machine is breathing for him. So far, his arterial blood gas analyses post-op have been very good; however, per Jude's nurse for this evening, there's a possibility that he could be in the midst of a respiratory "honeymoon" period that some children experience after undergoing surgery. As things move forward, please pray with us that Jude's respiratory status will remain stable and that he will need very little or no additional breathing support.

The hour grows late, so I'll stop there for the night. I'll leave you with a few pictures of our little man. Again, thank you all for reading and for offering up prayers on behalf of baby Jude and our family.



Little boy looks up at mommy


Sneaking in a kiss


This little boy is long


See you in a little while -- last pre-op photo


Back in the NICU, post-op


Oh give thanks to the LORD; call upon his name;
make known his deeds among the peoples!
Sing to him, sing praises to him;
tell of all his wondrous works!
Glory in his holy name;
let the hearts of those who seek the LORD rejoice!
Seek the LORD and his strength;
seek his presence continually!
Remember the wondrous works that he has done,
his miracles, and the judgments he uttered,
O offspring of Abraham, his servant,
children of Jacob, his chosen ones!
(Psalm 105:1-6)

I will give thanks to the LORD with my whole heart;
I will recount all of your wonderful deeds.
I will be glad and exult in you;
I will sing praise to your name, O Most High.
(Psalm 9:1-2)

Success! Surgery Coming to an End! Praise God!

Jude's nurse, Lesley, just came out to give us some great news: Jude's GORE-TEX patch is in place, and his surgeons are closing him up right now! Dr. Hebra reportedly said that he's more pleased with this hernia repair than the last one! Praise God! More details to come later!

P.S. I don't think I've ever written four exclamation points in a row. :) Thank you, God!

Surgery Update: So Far, So Good!

Lesley, Jude's nurse, just stepped out of surgery to bring us news: So far, everything is going well! Praise God!

Things apparently got off to a slow start, as the medical staff worked for a while to get some additional points of IV access, presumably to give Jude blood if that becomes necessary. Dr. Hebra, Jude's surgeon, made an incision in Jude's chest and has managed to move the abdominal organs that were in Jude's chest back down below what little bit of diaphragm he has. A happy discovery was also made: Jude has some scar tissue below his heart on the right side of his chest cavity, which will serve as a good place to suture the GORE-TEX patch (i.e. the mesh/patch that will close the hole in Jude's diaphragm) on that side of his chest. Apparently, Dr. Hebra would have had to suture the patch to the pericardium (the membrane on the outside of the heart) if this scar tissue had not been present where it is. Again, praise God for this wonderful, unexpected mercy!

While we are so excited about this positive report, the operation is far from over: Dr. Hebra still has to suture the GORE-TEX patch through the single incision that he's made in Jude's chest, which will be challenging. The plan is to stitch the patch to the aforementioned scar tissue beneath Jude's heart and to the inside of Jude's ribs in his chest cavity. Dr. Hebra has the assistance of another pediatric surgeon, Dr. Chris Streck, so please lift up these two men in prayer with us as the surgery continues.

We'll keep you posted!

Jude's In Surgery!

Folks,

Jude went down to the OR about an hour ago. We're not yet sure exactly when his procedure began, but we can only imagine that all the preparation is now complete and that surgery has started.

Please continue to lift up our little man in prayer! Also, please praise God with us for his many mercies to Jude and our family over the last 5 months.

Sunday, April 29, 2012

Prayers for Surgery

Hello, friends. Today was a good day with our little man, replete with morning and afternoon holds from mommy and daddy. (Jude sacked out both times we held him. His modus operandi is to squirm a little bit at first, then burrow down in our arms until he's in his desired position for sleeping.) We got in some good snuggle time with our little monkey, as after tomorrow we may have to wait a little while before we can take him in our arms and love on him. As always, we're very thankful for these little moments with our son.

So, tomorrow is the big day. Hernia repair surgery at 1 pm. (We were previously told it would start at noon, but it has apparently been pushed back an hour.)

So what can we expect tomorrow?

We're anticipating that Jude will probably be readied and transported down to some sort of surgery holding area a short while before his actual procedure is scheduled to start. At some point before surgery actually begins, Jude will be given some perioperative antibiotics to guard against possible infection that could develop as a result of the surgery.

Please pray with us that Jude's antibiotics will be effective and he'll be protected from infection as he undergoes surgery.

One of Jude's primary nurses, Lesley, will be accompanying him to the operating room and will remain with him while he's in surgery.

Please pray for Lesley with us as she accompanies Jude to surgery, that she will be equipped with everything she needs to provide assistance to the other medical staff in the operating room and that she can be a comfort to Jude and advocate for him when his parents can't be with him.

Before the surgery begins, Jude will be given some anesthetic and paralytic drugs, which will render him unconscious and immobile for the surgery. One or more anesthesiologists and/or nurse anesthetists will administer these drugs and, I think, will remain for the duration of the surgery until Jude returns to the NICU to recover.

Please pray with us for the anesthesiologists that will be assisting in tomorrow's surgery. Please pray that God will accord them wisdom as they make decisions about Jude's anesthesia. Also, please pray that Jude's body will respond well to the anesthesia and that he'll experience no complications.

Dr. Andre Hebra will carry out Jude's hernia repair operation. As we have been told, Dr. Chris Streck will accompany Dr. Hebra and will assist in the procedure. I'll forgo all of the details, but Dr. Hebra has communicated to us that he feels some nervousness about the surgery, as it will pose some technical challenges. Jude's insides may be laced with scar tissue as a consequence of past infection and of the first hernia repair operation.

Please pray with us that the Lord our God would grant wisdom, discernment, and skill to Dr. Hebra and Dr. Streck; that, through Him, they would surmount any technical challenges or obstacles that might be present; and that the surgery would be a success. Pray with us that Jude's insides would be in the best condition possible for the surgery, and that the doctors and other staff would be amazed. Pray also that God would strengthen and fortify Jude's little body against the trauma of being cut open and having his organs moved around.

God willing, after the surgery is over, Jude will be transported back to the NICU for recovery.

Please pray with us that Jude will be brought safely through the surgery and be granted a head start on the road to recovery.

We will be posting to the blog tomorrow to keep everyone updated as Jude progresses through surgery. Thank you all for your thoughts and prayers for Jude and for our family. 

Saturday, April 28, 2012

Jude's life over the last few days

 Hi friends,
Jude's been holding steady over the last few days. The doctors aren't changing his feeds, meds or ventilator settings at all right now. They want to keep him happy and comfortable until surgery. Jude's x-rays look pretty good and he is on pretty low settings on the ventilator.We are praying for a steady day tomorrow (Sunday) and for an uneventful morning on Monday. We want our little guy happy and healthy when he heads in to surgery.

Here is what Jude has been up to lately:
Annabelle went to visit Jude again on Friday. They held hands and Annabelle sang three songs to Jude. It was such a sweet time for us to have our children together.
Jude spent time snuggling with his sweet daddy. Jude spent a lot of time smiling and playing with his daddy too.
 Jude's been charming all of us with his sweet big blue eyes and his smile. We are trying so hard to catch his big smile with our camera. It is amazing how big he smiles with that awful ventilator tube in his throat. Oh how we wish for days filled with Jude's smiles with no tubes!
 Jude and I have also spent time snuggling and smiling. I've been savoring every little minute with my sweet baby boy. Every time that I hold him he eventually melts into my arms and falls asleep.
I also had to share a photo of the cute sign that our nurse, Caroline, made for Jude. Notice the rainbow feet? Just another sweet reminder that the Lord is always with Jude and always with us.

We continue to ask for your prayers. Thank you to those of you who are participating in the prayer vigil for Jude on the date of his surgery. If you want to be a part of the prayer vigil you can find information on THIS FACEBOOK PAGE.

Please pray for Brian and I as we prepare for Monday. At this moment the thought of watching Jude head into surgery is almost more than we can take. We are savoring our time with Jude right now but so nervous about what lies ahead. Please pray for peace from the Lord that passes all understanding.

Junkin’ for Jude

Junkin’ for Jude
We are having a yard sale and all proceeds will go to the Morrison family to help with anything from daily expenses to medical bills.  Why not take this great opportunity to get started on your spring cleaning, but also give you a chance to donate to a great cause! So start cleaning out your closets, basements, garages, and storage units to discover things that are accumulating dust.
Here are all the details and how you can help:
DATE:  May 19, 2012        *Rain date will be June 9, 2012*
LOCATION:  407 Summerwalk Place, Simpsonville, SC
HOURS:  8am – 12pm
CONTACT:  Kristen Bray, Yourdy@charter.net, 864-506-5455 (call or text)
DONATIONS:  We will be collecting donations starting this week.  If you have larger items we prefer to collect those the week before the sale due to limited storage space.
VOLUNTEERS:  We will need help in the following ways:
Collection – collecting from friends and neighbors or helping to pick-up from those who can’t deliver their donations.
Organizers – anyone who can donate and hour or two the week before the sale to sort and price.
Set-up – Friday night and Saturday morning will be busy times and a few people will be needed to get the final details ready and the items out on Saturday morning.
Work the sale – Are you a good sales person and know how to get stuff out the door, then we need you. 
Clean up – Hoping to have it all sold but will need help packing up. 
Other items needed:
                Bags – plastic and brown paper bags.  There will be bagful sales happening.
                Tables – we will need folding tables to display items.
                Clothing Racks – if you have sturdy clothing racks we might need a few.
                Hangers – extra hangers to display individually priced clothing.
Please consider donating anything from a box of books to a car full of items you no longer use.  Ask your friends, neighbors and co-workers to consider donating to this wonderful cause.   

Thank you!

Kristen Bray

Quick morning update

Hi! Jude had a good day yesterday....spent some time with his sister....smiled at his mommy and daddy a lot. And took a long snuggly nap in his daddy's arms. We are off to spend the day with him this morning...can't believe that surgery is almost here. We are ready....but at the same time we aren't. Such a big day ahead for our little man. Thank you for your continued prayers and encouragement. So thankful for the prayer vigil too.

Thursday, April 26, 2012

Surgery date and time

Suffering from a SERIOUSLY slow internet connection tonight....so this is a quick update: Jude will have surgery on Monday at 12noon!

Wednesday, April 25, 2012

Rainbows

Hi friends,

First of all, I want to apologize for keeping you all waiting to hear about Jude. I thought about writing...but there wasn't much to share. Mostly we were just waiting and enjoying our boy. Jude has been surprisingly content and happy since his major freak outs on Sunday and Monday. He has even been smiling at me and his sweet nurses. It has been SUCH a blessing to see him so happy. He has been acting much more like himself despite having a ventilator tube in his mouth. Praise our gracious God for allowing Jude to enjoy such good days!

So, I must give you a little bit of a back story for this blog post...

Many of our readers know that my baby sister, Rachael, survived a terrible car accident and brain injury many, many years ago. During the months that followed Rachael's accident we saw many glimpses of the Lord's promises. One way that we felt like the Lord was directly communicating with us was through rainbows. The first instance was when my grandparents got the news about Rachael's accident and injuries she sustained. As they pulled up to the hospital and they spotted a rainbow above it and many, many rainbows were spotted during the darkest days and during Rachael's recovery. We really think that the Lord placed rainbows throughout my family's lives as a reminder that He was with us always and that he still performs miracles. And he did. And he has. And he will.

That being said...let me tell you about today!

Yesterday was frustrating because we anticipated getting answers about the plan for Jude's care...but yesterday came and went without answers. I came to the NNICU this morning feeling discouraged but determined to get some answers.

Later in the day, the neonatologist and the surgeon spoke and made a plan for Jude's care and it was communicated to me that the surgeon would be by to discuss it with me. I waited around for a few extra hours to be sure to speak with Dr. Hebra and in the meantime I got plenty of time to hang out with Jude and hold him. Jude was so sweet and happy. We played together and he is really enjoying kicking his toys with his cute little feet. If he didn't have a tube in his mouth I swear he would be laughing now.

At one point, the respiratory therapist and Jude's nurse (Erika, who I am sure Jude has a crush on!) were adjusting his ventilator tube and he was freaking out a bit. I was a little distressed to see him upset and stepped back to try to settle down...at that moment the social worker walked in to tell me some upsetting news about some insurance/billing issues...and then the neonatologist stepped in to convey to me that he was certain that Dr. Hebra would be by he just wasn't sure at what time. I felt like the world was spinning out of control.

I walked out of the NNICU to pump and to try to call Brian and my mom to update them on what was happening with Jude and our insurance situation. But my cell phone battery died. I felt so overwhelmed, so alone, so worried and honestly I just wanted to give up completely. My sweet son is so sick and I just want him to be well and home. And on top of all of my worries for Jude it felt like everything else in our lives is just all over the place. We are so, so weary. And I stopped and prayed...I asked the Lord for mercy. And honestly, I asked him "Please show yourself to me. Where are you? I need you!" I felt much like David might have felt when he wrote the Psalms.

I returned to Jude's beside and Jude's nurse, Erika, and another nurse nearby that we also love (Sara C.) told me that they saved a big slice of chocolate cake for me because they felt that it was a chocolate kind of day! They told me that the piece of cake was waiting for me at the front desk when I was ready. So sweet and thoughtful of them. I truly cannot express how thankful I am for the amazing nurses in our lives!

Soon I was informed that Dr. Hebra was in the conference room and was ready to meet with me. I was ready...but nervous.

Here is what was communicated:
Weeks ago the plan and hope was that Jude could continue receiving feeds of breast milk to help him grow bigger and stronger. Another hope was that Jude's respiratory status would remain stable while he grew bigger and stronger. And as you all know, neither of these things have happened for Jude. He has continued to need more and more respiratory support. He has grown (praise God for that!) but feeds have been a bit of a struggle and it may be possible that feeding him is causing his intestines to push on to his lung and causing respiratory problems.

Dr. Hebra feels that we have tried to help Jude reach these goals, but at this point pushing him to try to meet these goals is no longer beneficial. And now he thinks that it is time for Jude to have his 2nd repair surgery.

Wow.

So, that is where we are now. Jude will have surgery on Monday or Tuesday.

This is still a very risky surgery. Dr. Hebra is not excited about doing Jude's repair surgery because it will be a big challenge. He is planning on having a second surgeon help him with Jude's repair too. There is still a great possibility that the adhesions could make Jude's surgery very difficult and Jude could suffer from major bleeding as a result. It is also likely that Jude will reherniate....although it will likely be much further down the road.

We greatly covet your prayers for Jude's body. Please join us in praying for very minimal adhesions and for no bleeds. Please pray for Dr. Hebra and the surgeon who will be assisting him. They have such a difficult job ahead of them. Please pray that Jude will remain healthy, happy and stable until his surgery. Please pray that his body will remain strong and ready for such an invasive procedure. Please pray that all sickness and infection will stay away. Please pray for a SAFE and SUCCESSFUL surgery.

So, back to the rainbows. After my meeting with Dr. Hebra I went back to Jude's bedside and he greeted me with a smile. I played with him for a little while and decided that I should head back to the house and spend time with my sweet Annabelle. On my way out I stopped by the front desk to pick up my chocolate  cake. I decided to take my cake to the waiting room to sit for a few minutes to reflect on the day's events. When I arrived I found the waiting room empty and I decided to sit in a chair that was next to the big window that looks down into the play area for the sick children (and their siblings). There were a few children playing and as I ate my cake my eyes fell upon a huge painting that was drying on a table. The entire page was drenched in paint with a RAINBOW.

The Lord is good. He is with us ALWAYS. Even in our darkest hours he is faithful and present. And I am certain that he can perform miracles...please join me in praying for one for our sweet Jude.

We love you all and will keep you posted on a date and time for surgery.

P.S. A fundraiser yard sale is being planned by a good friend of ours in the upstate for an up coming Saturday. Please check our blog in the next few days for details.

P.P.S. I know that many of you have been asking for ways to help us right now. There may be a few updates to the Manna for the Moment blog in a few days to share tangible ways to help.

P.P.P.S. I also forgot to mention that Annabelle, my dad and my grandmother all spotted rainbows THIS week. Amazing.

Tuesday, April 24, 2012

Morning update

A quick update: So sorry that we did not get to blog last night. We are all so tired. We moved to a different house yesterday too. 
Jude finished the evening with a little more rest thanks to more powerful medication (and a little extra love from one of our favorite nurses, Kayte). They are still not sure what is causing his pain/agitation. Jude's neonatologist and surgeon will be meeting today to discuss the plan for Jude. I hope to update you later this evening on how things are going. 
We are so thankful for you prayers for Jude. Yesterday was truly a difficult day. Our hearts were breaking knowing that Jude was so uncomfortable. Please pray that he can be pain-free and that he can get some good quality rest. He hasn't been able to nap like a normal baby in quite some time.

Monday, April 23, 2012

Pain

Jude is in a lot of pain right now...doctors are working to find the source of his pain. The pain medication they've been giving him isn't even touching his pain. Please pray for our sweet Jude. There is going to be a GI study done this afternoon and a visit with the surgeons. We will update when we can. So thankful for any and all of your prayers....

Sunday, April 22, 2012

Up, Down, Up, Down

Hi, everyone. Brian here. Today was a little trough on this roller coaster ride with CDH, but the day ended on a slightly more positive note.

So here's the quick summary of the day's happenings:

After visiting with Jude yesterday, Rose and I thought he didn't seem quite right: He was pretty fussy, and even though he was eventually consolable, he spent about 90% of the time that he was awake crying. Consolation didn't come easily, even with the various tricks that we know to try with him.

When I spoke to Jude's nurse (Lesley -- one of our faves!) this morning, she also thought that he appeared pretty agitated; consequently, she requested an x-ray to determine if anything was amiss. Satisfied and in agreement with her that an x-ray sounded like a good idea, I hung up and prepared to go to the hospital.

Later, as Rose and I were pulling into the parking garage at the hospital, Lesley called us with some news. First, the x-ray made it pretty clear why Jude was out of sorts: His entire left lung was collapsed. (He also had some partial lung collapse on the upper lobe of his right lung, but he's had that for some time, so we weren't totally surprised by that.) Second, and more importantly, Jude's doctors had already conferred and felt that reintubation (i.e. putting a breathing tube down Jude's throat again) was probably going to be necessary to give him the respiratory support that he needed.

Throughout the morning, the flow (i.e. the pressure or force used to deliver air/oxygen) and oxygen settings on Jude's Vapotherm (high-flow nasal prongs) had been considerably increased to ensure that he had a sufficient amount of oxygen in his blood. (These increased settings made sense in light of the fact that Jude was effectively breathing with one lung.) However, it soon became clear that even the increased settings on Vapotherm wouldn't provide Jude the support that he would ultimately need. With increased settings, Jude still was taking 60-80 breaths per minute and had a heart rate ranging in the 180s and 190s. Reintubation would eventually be necessary to reinflate Jude's collapsed left lung and relieve him of all the extra work his body was necessarily doing to oxygenate and regulate the amount of carbon dioxide in his blood.

Eventually, a little after 1 pm this afternoon, the medical team assembled to perform Jude's reintubation, so Rose and I stepped out of the NICU for a while. When we returned a little later in the afternoon, Jude looked so much happier. He had been very fussy yesterday and this morning, so even though Rose and I certainly weren't excited that the much derided endotracheal tube had out of necessity reappeared, we nevertheless were happy to see that our little boy appeared to feel better. His big, blue eyes were agape, staring at his monitors, little toy frogs, and other items of interest that were nearby. And daddy got to hold him, which is always wonderful. :)

Another odd development from this morning was that Jude was seriously gettin' his poop on: He stooled 4 times in a little more than 5 hours. That might not sound weird, but Jude only stooled 5 times in the 24 hours before his morning poopfest. Naturally, this made us wonder whether something strange was going on with his gastrointestinal system. As the day wore on, a radiologist would later indicate in his report that Jude had more bowel loops in his chest than had previously been there. As yet, we still don't know whether the extra intestines in his chest caused him to stool so much; his feeds have been suspended for the moment. The feeds might be resumed tomorrow, so we'll hopefully have more details on that later.

For now, please pray with us that Jude's body responds well to being reintubated and that he continues to remain stable without any need for increased respiratory support. Pray that the Lord would strengthen and open his lungs. Also, please pray that his stomach and bowel continue to function well mechanically, even as they are in the wrong place and possibly oriented or turned in a way that doesn't foster the best functioning. Finally, please pray for the doctors and nurses taking care of Jude. His is a complicated case, and so they all need skill and wisdom that only God can provide.

Oh, and one more thing: In the next few days, Rose and I will be moving into another house nearby in Mount Pleasant. Here's the new address of the house we'll soon be occupying and where we'll also be receiving our mail:

1442 HEATHER DR
MT PLEASANT SC 29464-4556
Please continue to praise God with us for providing our housing in Mt. Pleasant through Crossbridge Ministries. The folks at Crossbridge have been awesome, and their assistance and love that they've shown to us has been one of the most amazing ways in which the Lord has shown us mercy as we've gone through trials over the past 5 months.

We'll keep you all posted! Many, many thanks for your prayers, support, and love!

Thursday, April 19, 2012

Oh Happy Day!


Hi friends!

Big News Tonight!

Jude was extubated today and he is now off the ventilator! Yippee!!!!
We are thrilled! And so thankful that the Lord planned a good day for Jude today.
Please join us in praying that Jude’s lungs will be able to comfortably breathe on Vapotherm and that he will not need to be re-intubated until his 2nd repair surgery.
I was able to snuggle with him for awhile today (yes, I am feeling much better now!) and I snapped a few pictures of Jude after he was placed on Vapotherm. He looked much more comfortable without that awful tube in his throat and he promptly fell asleep. 

Here is my sweet sleepy head:
 

Wednesday, April 18, 2012

Quick update 4/18/12

Just a quick update tonight: Jude's TP tube blocked off (clogged) last night and they were unable to feed him. So today he went down to imaging to have another TP tube placed and they were able to resume his feeds at the same settings!

I stayed away from Jude again today in hopes of kicking this cold and I'm thinking I may be well enough to see him tomorrow. (Lots of water, naps, saline, vitamin C, etc.)

He is doing well from a respiratory standpoint too! Hoping for some big changes tomorrow...

Tuesday, April 17, 2012

Mommy sick day = Time with Nana Beth!


Hi friends,
Not a lot of new stuff to share about Jude today (which is awesome!) because he has been steadily improving on the ventilator. This morning he had yet another good blood gas and they weaned some of his settings on the ventilator before rounds this morning. The doctors are planning to get another blood gas in the morning and if things are still looking good they will likely wean his settings even more! Praise our amazing God for pulling Jude out of his scary respiratory sickness!!

I am sure that many of you are wondering what the next step for Jude is going to be. Obviously we are hoping that Jude will continue to climb to better and better settings on the ventilator and the doctors are hoping that Jude will be extubated eventually. 

So what happens if he is extubated? 

Well, he will likely be on some sort of respiratory support…maybe CPAP…maybe Vapotherm…or even oxygen nasal cannula. 

But what next?

Well, that is still yet to be determined. IF Jude is extubated and he continues to tolerate his feeds, he will likely continue to wait a little longer for his second repair surgery. IF Jude is unable to come off the ventilator, surgery will likely be sooner than later. 

How long will he wait?

At this point, we don’t know. We are sure that our questions will be answered better as we see how Jude is performing from a respiratory standpoint. What we do know is that we and the doctors want Jude to be as healthy and strong as he can be before his surgery. 

So what now?

We wait and PRAY!

Please pray especially for Jude’s lungs to grow stronger and stronger. Pray that he will be able to come off of the ventilator and please pray that he will be able to continue to tolerate his feeds. 

Fun News:
I am still sick and staying away from my little man until I can be sure that he won’t catch my cold. Of course, it is likely that I caught my cold from him!

BUT!!

Nana Beth spent several hours with Jude today!!

She spent some time playing with him and then she held him for a few hours. She was more than happy to spend a little extra time with our little man and I am sure that he enjoyed it too. 

Here is a little preview:

In other news:
Sweet little Lily had her repair surgery today and things went really well! They were able to successfully repair her diaphragm without a patch! This is a HUGE praise. Please pray for Lily’s healing and for her left lung to GROW!

Jude’s sweet nurse, Meghan seems to be feeling better and better each day. Please pray that she will be able to go home soon!

Thank you for continuing to pray for Lily and Meghan!

Monday, April 16, 2012

Quick update 4/16/12

Another quick update tonight! (hoping to do a longer post tomorrow)
First of all, please pray for baby Lily she is having her CDH repair surgery tomorrow at 8:30am!

Second, please pray for me...I'm quite certain that I have a cold and therefore I am staying away from Jude. He is just now getting over his terrible cold/respiratory illness and I don't want to take any chances with making him sick! Please pray that my cold will disappear quickly so that I can spend time with my little guy! But praise God that Nana Beth (my mom) is here and she can snuggle with my little guy!

Please also continue to pray for Jude's lovely nurse, Meghan Bell! She is still in the hospital and needs healing!

Jude had another wonderful blood gas this morning and the doctors decided to wean some of his settings on the ventilator! Yippee! What wonderful news! The plan is to continue to wean his settings on the ventilator and to continue with his breast milk feeds into his intestine in hopes of getting him bigger and stronger (and therefore better prepared for his 2nd repair surgery)!

Thank you SO much for continuing to follow Jude's progress and remembering him in prayer for so many months.

Sunday, April 15, 2012

Quick update 4/15/12

Just a quick update tonight: Jude had a beautiful blood gas this morning and was comfortable, happy and relaxed most of the day. When I visited with him this afternoon he was kicking around and SMILING at me with the ventilator tube still in his mouth! What a joyful day! We are so thankful that he seems to be feeling MUCH better. Please continue to pray that he will feel better and better.
Brian is visiting with him tonight and planning on holding/snuggling. I guess you could call it a boy's night in! :)
God bless!

Saturday, April 14, 2012

130 Days


Jude's 130 days old! He had a pretty good day today, relatively speaking. Here's a quick rundown on what's new:

  • Jude's blood gas this morning was really good! Please join us in thanking God for this bit of good news and pray that his blood gases will continue to improve in the coming days.
  • The amount of pressure that the ventilator is having to use in order to deliver the necessary volume of air to Jude's lungs was lower today as well, which is good to see and generally means that his lungs may be a little more compliant. Please pray with us that his lungs will continue to expand, that any secretions or mucus inhibiting lung expansion will disintegrate, and that the pressure necessary to ventilate Jude will decrease.
  • Since Jude's experienced a little bit of respiratory improvement, his ventilator settings were turned down just a wee bit today. Please pray with us that the Lord will allow Jude to continually improve such that he can be further weaned on his vent settings.
  • Jude will be getting a 10-day antibiotic treatment with a drug called nafcillin. A pulmonologist who consulted with Jude's doctor recently requested that some secretions from his lungs be collected and sent to the lab to be cultured. Today we learned that staphylococcus aureus bacteria has been grown from the aspirate/secretions that were drawn. There's a possibility that Jude's breathing tube is merely colonized with the bacteria and that he doesn't actually have an infection that's actively causing problems in his lungs, but his doctor nevertheless thinks that it's reasonable to treat him with antibiotics to ensure that any possible infection is eradicated. Please pray with us that God will use the antibiotics and any other means He chooses to rid Jude's body of infection and to strengthen him in the coming days and weeks.
  • Jude is now being fed enough breast milk that his IV nutrition has been discontinued. That's great news! There is still room to increase his intake of breast milk, but he's getting quite a bit now. Jude's surgeon has been adamant that he get good nutrition, as it is purportedly important if Jude's second hernia repair surgery is to be successful. Please pray with us that the Lord will use the milk Jude's receiving to nourish and fortify his little body so that he can withstand any trauma or insult that he may encounter in the future.
  • Rose and I have both had opportunities to hold our little boy in the last two days, and as always, it warms our hearts to embrace our child and remind him that he is dearly loved by his parents and his Heavenly Father. Please pray with us that God would take our imperfect gestures of love -- holding Jude, reading to him, holding his hand, speaking affectionately to him -- and use them for His glory and for Jude's benefit.

God has brought us into contact with many other families who are hurting and whose loved ones -- in many cases, children -- are experiencing physical suffering. Please pray with us that our Father would pour out His mercy on these families and that they would have a felt, ineffable sense of peace, even as they weather storms in their lives.

As always, thank you all for checking on us and praying with us and for us.


    O LORD God of hosts, hear my prayer;
        give ear, O God of Jacob!
    (Psalm 84:8)



Thursday, April 12, 2012

Snuggle time

First, I want to ask all of you to join us in praying for baby Lily.

Lily has been fighting her CDH battle for 10 days. I met Lily's mommy (Liz) back in January and knew that Lily would be delivered at MUSC. Over the last several days, we've watched Liz and Grady (Lily's daddy) love on their sweet girl every day and we've been praying for Lily as she has been on ECMO most of her life. Lily was placed on ECMO about a day and a half after she was born and today they tried their first trial off! The trial went well and they are going to try another trial tomorrow. If all goes well, Lily will be taken off of ECMO and on the road to her repair surgery on Tuesday. Please pray for Lily's trial off tomorrow and for Liz and Grady as they await the results of this trial. Please cover them in prayer this weekend and next week as they face the CDH challenges that Lily will fight. Pray for strength and health for Lily! According to her mother Lily is a feisty little lady! We will keep you posted as we can.

As for Jude, he had an ok today. He started out the day with two not so great blood gases, so the doctors and nurses worked to come up with a new plan to try to tackle the struggles that Jude is facing with his breathing, CO2 and ventilator settings. He just seems "stuck" since he was intubated on Wednesday of last week. In rounds this morning, it was decided that Jude would receive a visit from the pulmonologist to see if a new set of eyes could come up with some new ideas on how to help Jude's body get rid of the "junk" that just won't seem to leave his chest. Jude sounds so congested and "junky" in his chest and has sounded like this for far to long. We hope to learn about the pulmonologists thoughts tomorrow morning. It was also decided that Jude would start receiving a Lasix dose every day again (he was receiving them every other day) in hopes of helping his eliminate some of the extra fluids that he is retaining in his chest. Additionally, they decided to do CPT which is a treatment from a respiratory therapist in which they essentially beat on Jude's chest to help break up the congestion. And lastly, Jude is spending a little more time on his tummy each day because this gives Jude's lungs an opportunity to lay in a different position and hopefully open up a little more. Will you join us in praying that these measures will be helpful in recruiting Jude's right (good, big) lung? We'd love to see his ventilator settings go down instead of up. Our poor little boy is so weary from being so sick.

Now for some good news: Tonight Jude will be receiving enough breast milk to no longer require TPN for nutrition! We are thrilled that he is tolerating his TP feeds so well! As you may remember, Jude's surgeon was hopeful that Jude could tolerate TP feeds so that he could grow bigger and healthier for surgery in the future. Praise God!

If Jude can get to a healthier respiratory status then he will be able to grow and get stronger for a future and safer 2nd repair surgery. If Jude's respiratory status does not improve then surgery may come sooner...but will be at a much higher risk. We continue to remain hopeful and prayerful!

This afternoon I had the benefit of being a part of Jude's tummy time...here are a few pictures of our snuggling!

Many thanks to Jude's nurse Lesley for snapping this pictures for me.
Such sweet moments.

Tuesday, April 10, 2012

Truckin' along

Happy Tuesday!

The last few days for Jude have been mostly uneventful from a medical perspective:
  • Jude's blood gases have remained pretty steady of the last few days...not great, but not awful. 
  • Mostly, Jude's settings on the ventilator have stayed the same as well. 
  • His cold is mostly gone, but he still remains a little "junky" in his chest and continues to receive respiratory treatments to help with this issue.
  • He is handling his breast milk TP feeds well thus far! He is about halfway to full feeds now. We are hopeful that he can tolerate full feeds well because these will help him grow bigger and stronger (and therefore in a better spot for his 2nd repair surgery)!
  • Jude is pretty sedated now (because he is super strong and capable of extubating himself again) and therefore he is sleeping quite a bit. It is so sweet to snuggle him while sleeping but it is also wonderful to spend some time with him when he is awake. This morning I held him while he slept and this afternoon I gave him a washcloth bath and read books to him. It is such a joy to spend time with Jude.
What you can pray for:
  • Please continue praying for Jude's adhesions to miraculously heal before surgery. Pray that the surgeon and doctors will be amazed by the amount of healing that has taken place. 
  • Please pray that Jude's cold and "junky" chest problems will resolve and allow for him to feel better. Pray that he will breathe easier this week!
  • Please pray for better blood gases!
  • Please pray that Jude's TP feeds will continue to go well and that his little body will grow strong!!
  • Please pray for Jude developmentally. Before he was intubated again Jude was close to being on track developmentally for his age but we worry that he will struggle more now that he has experienced such a big setback. He is not able to enjoy PT or OT much right now. It breaks my heart that he can't get out of the bed and enjoy time "exercising" right now. He was once such an active little guy. Please pray that he will feel stimulated and interested in the world around him. 
  • Please pray for plenty of bonding time for Jude and us. I really feel like time spent snuggling and talking with Jude is very important right now.
We are still hanging in there waiting for surgery at some point down the road. It is hard to wait...but we are certain that the Lord will provide a way at the perfect time.

Thank you for all of the texts, emails, facebook messages, emails and comments on the blog to let us know how you are praying for Jude. It was SUCH an encouragement to hear of the many ways that you are feeling called to pray for Jude. He is COVERED in prayer!

Much love to all of you!

Are you on facebook? You can follow Jude's progress by joining this facebook group:
https://www.facebook.com/groups/219285074818496/

Monday, April 9, 2012

Quick Jude update

Quick Jude update: Over the last few days Jude has remained pretty steady. He has had a few iffy blood gases, but before I left tonight he ended the evening with a good blood gas. (They tweaked some of his ventilator settings) He continues to tolerate feeds well and they continued to "up" the amount of milk he is receiving. And of course, he continues to charm us, his doctors and nurses. We LOVE him so much!
I am hoping to do a full blog post tomorrow afternoon/evening. Thank you for your prayers!

Thursday, April 5, 2012

Where to start?

Hello again,

I am going to try to give you the shortest version of the many events that happened with Jude today. I hope I can clearly share with you what has happened...I am just so tired.

This morning Jude's blood gas was so-so and in rounds we discussed adjusting the settings on his ventilator to support him better. Jude seemed to be in a really good place with his sedation- just enough to keep him calm, but not too much so that he couldn't be somewhat alert and aware. I spent the first half of my visit talk to him and stroking his little head. Jude's nurse (Erin, who we love!) told me that I could hold him later in the afternoon. I was thrilled that I could snuggle with him despite the fact that he has to be on the ventilator. So, we planned for me to hold Jude after I ate lunch and I left the NNICU for an hour or so.

I returned to the NNICU and the unit secretary told me that I could go to Jude's bedside but that Erin wanted me to wait to enter his bed space because they were getting a routine X-ray. I stopped for just a few minutes to wash my hands and spoke to a few nurses as I made my way back to Jude's bed. In the time between when I entered the NNICU and when I arrived at the area near Jude's bed Erin picked Jude up to allow for the X-ray equipment to be placed under Jude. When she picked Jude up he began to freak out. So much so that he began to bear down and block his airway. Therefore the ventilator was unable to provide Jude the support he needs to breathe. As I turned the corner, I saw them "bagging" Jude and giving him breaths with the manual ventilator. I could just see his little legs kicking...he was fighting BIG time. They were able to successfully ventilate him with the "bag" and then place him back on the ventilator. But as soon as they placed him back on the ventilator blocked his own airway again and they had to "bag" him again! It was scary to watch...but I was also so thankful for the composure, speed and skills that the nurse and reparatory therapists demonstrated as they worked on Jude. In the end they were able to get him back on the ventilator again. I visited with him and hoped that he would settle down and rest.

After a half hour or so, the results of Judes X-ray came up and the doctor came by to share with me that Jude's right lung (his strong one) had collapsed and that the incident that just occurred likely was caused by this. In response to Jude's lung collapse they decided to place Jude's right side up and deliver CPT to Jude's chest in hopes of opening up his lung so that it could start working again. They got another gas and it was the best blood gas that Jude has had in quite some time! In face in was within the range of his normal baseline. We were in shock! Thank you to all of you who lifted up prayers for Jude after receiving the email my mom sent asking for prayer. Needless to say we were thrilled with the improved blood gas.

So, I headed back to the house and celebrated by kiddo bowling and cupcakes with Annabelle and my mom. (We had a great time!) But as we were getting out of the van, I got a phone call from the NNICU on my cell phone. It was one of Jude's doctors and she shared with me that Jude's had extubated (removed his ventilator tube) himself and that they had to "bag" him again. My heart dropped. Thankfully, he handled being bagged well and they were able to sucessfully re-intubate him again without much trouble. Jude was resting again and they planned to check another blood gas after he settled and rested again.

Jude's next blood gas was the best blood gas that we've had since before his Broviac surgery...what a miracle! Despite all of the craziness that Jude experienced today he ended the day on a good note. We are thankful and hopeful that Jude will continue to have good blood gases and that the ventilator will continue to help him.

Please pray for Jude. He is still very, very sick. And we are still worried for him. There are so many things we want to ask for you to pray for....but tonight I want to ask you to pray for Jude as you feel led. Will you share with us the specific things that you are praying for? It will give us great encouragement to know what the Lord is bringing to all of you to pray for. We know the Lord is hearing all of our prayers.

God bless you all.