The new year cometh

So many updates, so little time. Let's do this!

Hawk'd up and ready to rock

When last I left you all hanging, we were expecting a surgery in the next couple of days. As that week progressed his surgery kept getting pushed back and was eventually scheduled for Friday the 19th, at 7:30 AM. Ezekiel was to have a vesicostomy and a tracheostomy. We've talked about a trach before, so I'll go ahead and assume you remember what that is, but what is this mysterious vesicostomy? Gather 'round, children, I'll tell you. This is a procedure where an opening is created from the bladder to the outside of the body. They thought Zeke needed this because he still wasn't peeing. He was creating a small amount of urine, but it was just sitting in his bladder. They assumed this was happening because his bladder is severely damaged from being blocked for so long that it was unable to push that urine out. They can always use a catheter to drain it, but this isn't a good long term solution mainly because of its infection risk.

Jenny and I arrived at the hospital bright and early to be there before surgery. The nurse was already scrubbed up and getting ready to wheel Ezekiel to the OR when Zeke's urologist came in and told us that they had decided to cancel the vesicostomy. They felt that it was just too dangerous for Zeke because there was a risk of compromising his stomach cavity. If that happened, they would have to halt his dialysis and that just wasn't an option. Canceling the vesicostomy also ended up canceling the trach. Zeke's need for a trach wasn't emergent and they wanted to combine this with another procedure if possible, to reduce to strain on his body. The likelihood of him needing another procedure in the near(ish) future was great enough that they wanted to hold off for now. We got all worked up for nothin'!

Spoiler alert for the observant

That night we got an infection scare. Ezekiel had a couple dialysis drains where the fluid was very cloudy. Normally this fluid is clear, if tainted slightly yellow. Cloudy fluid can be the first sign of peritonitis, which is a dangerous and painful infection of the stomach lining that makes peritoneal dialysis possible. This is the infection they've been warning us about before Zeke even started dialysis. They said if he got this, they were afraid it would be too much for him to handle. They started Zeke on antibiotics immediately and started running all kinds of tests to verify whether or not he had an infection. The next morning we got a visit from the infectious disease team and they brought bad news. Their tests had revealed yeast in his dialysis fluid. This pointed to the fungal type of peritonitis, which would likely mean his PD catheter would get clogged with fungus and need to be removed. Curiously, Zeke was acting normally, and his dialysis drains had gone back to crystal clear. This had everyone scratching their collective heads, but they wanted to proceed as if he were infected simply because peritonitis ain't no joke. They did more labs, and took another sample of his dialysis fluid. All of these tests came back negative and his fluid analysis revealed no yeast. The original findings were chalked up to an over zealous interpretation of his slides. Finally able to breathe easier, we went home to rest.

No rest for you!

Zeke had other ideas, though. At 3:30 AM, we got a call letting us know that Ezekiel had coughed out his breathing tube! He did this with expert timing. The tube is always taped to his face, but he waited until they were changing said tape and executed his perfectly timed plan. We rushed into the hospital because we can interact with him so much more without that cumbersome tube and he could need it back in at any moment.

"These grey hairs you see are all because of you, son."

Ezekiel continues to surprise us all. Today, one whole week later, he is still without his breathing tube. He still gets a decent amount of support from those nasal prongs, but he's doing pretty well. His ventilator settings have fluctuated and there is still the possibility that he'll need the tube, and perhaps that trach, but for now we're pumped about how well he's doing without it.

I can do so many more things without my tube!

Just this past friday, the 26th, Ezekiel finally got his kidney tubes removed. The next day they pulled his bladder catheter, bringing his tube count all the way down to 3. Not that long ago it was as high as 10! Having all these tubes out makes him easier to handle and interact with. Jenny and I can finally comfort him in real ways instead of just patting him on the head from the side of his bed and saying "there, there, little one." We can now slide our hands under him and lift him slightly off the bed in what I have dubbed a ghetto hold. Rocking him slightly usually comforts him and us!

On the dialysis front, his fill volume has also continued to increase and they should be able to finally use that 90's fax machine they call a dialysis machine in the next few days. I'm sure his nurses will appreciate that since they've been doing it all by hand this whole time!

As you may have heard, this last week was a holiday of some renown, and the NICU handed out some gifts for the babies and their families. Hidden amongst the stack of Ezekiel's loot was this:

A fist bump made for the ages

I wasted no time in reading him the newest addition to his stack of books. The verdict is still out on who enjoyed it more, but as you can see in the picture above we shared our first fist bump for the photo op... how awesome is that?!

Thanks again for reading and for caring about Zeke!
Caleb

A whole week of recaps

Oh, Hi there!

I know it's been a little while since we've had update and I apologize for that. If you've wanted to reach out to me and say something along the lines of "wtf, dude, where is my update?!" Don't worry, several people beat you to it. The up side is that this has reemphasized how many people care about our little man even after all this time. This last week has been rather eventful, which has more than a little to do with the delay on the blog updates. Some of the happenings are bigger than others, but lets address them in the battle tested method: chronologically.

Presented without comment

Last Saturday, Ezekiel's due date, the doctors felt that his respiratory status was in such a good place that they wanted to see how he would do without his breathing tube. They have a fancy term for this of course, which is an extubation trial. This didn't mean that he went from full support to none, he still got some pressure support and oxygen through nasal prongs.

Look how happy I am to have my breathing tube out!

Sadly, the trial did not go all that well. He held his own for a couple hours, but then began to deteriorate. At first, they assured us that this was common. After all, Ezekiel has never had to breathe on his own like this in his entire life. We had to give him a chance to figure it out. Later that evening, though, Ezekiel hit a speed bump in the form of narcotics withdrawl. He's been on pain and sedation medication his whole life and those drugs are strongly addictive. They had been weening his drugs slowly over a few weeks, but it finally caught up with him. He had tremors, sweats, and couldn't sleep. After 36 hours of herculean effort, it became clear that this was just too much for him. He was visibly struggling to pull breath and his stats reflected his struggle. He got his breathing tube back on Sunday evening and it was immediately obvious that that was what he needed. It was good to finally see him comfortable again, but failing the extubation trial was more than a little disappointing. 

Last week also brought another surgery.

Ezekiel clearly doesn't think surgery is a big deal

The surgery was a success and Ezekiel handled it like a champ, as usual. By this point, this sort of business has become old hat for him. The purpose of this surgery was to remove the blockage from his urethra, the dreaded PUV. These little flaps of skin are what set off the chain of events that put Ezekiel where he is today. There was definitely something cathartic about knowing that Zeke's urologist zapped them into oblivion.

The next day brought another care conference to discuses his rather eventful week. His respiratory status was first on the docket. After he had failed his extubation trial, his doctors began talking about the possibility of a tracheostomy. A tracheostomy (trach) is a surgically created hole in the front of the throat that leads directly into the windpipe. This provides a more permanent site through which to deliver lung support. During our care conference, all of his providers agreed that Ezekiel would need a trach. This took me a good long while to come to grips with, mainly because the idea of it seems so barbaric. The benefits of a trach have since been clearly explained to me multiple times and we will, as always, pursue what is best for Zeke. There are lots of reasons that this is what's best for him, but perhaps the biggest reason is that all of his doctors feel that he will need lung support for a very long time. Yes, "a very long time" is terribly ambiguous. I share your frustration, trust me!

On the urological front, the immediate goal is to get those tubes out of his kidneys. They've done their job, but they are a potential source of infection and we need to get them out. Their plan is to clamp the tubes and see if the kidneys will drain through the bladder since his bladder blockage is now clear. If that is not successful, Ezekiel will need a pyelostomy. This is a surgical procedure in which an opening is created in the lower back that allows the kidney to drain, thereby bypassing whatever blockage is keeping it from draining to the bladder like it's supposed to.

On the dialysis front, they want to continue to slowly raise the amount of fluid that they put in his belly for each cycle. The goal here is that the more fluid he has on each dwell, the fewer dwells he'll need in a single day.

I'm a baby kangaroo! (A joey, if you will)

The other good thing that came out of the conference was that his PD catheter was now finally healed well enough that we could hold him upright. The very next day we got to hold him, just him, like a real baby. Prior to this he was frequently in a little burrito sack and had to be held belly up on our laps. We loved it, for obvious reasons, but it paled in comparison to the feeling of holding him to our chests. It was simply awesome.

This week is shaping up to be another eventful one with a couple of potential procedures on the horizon. I'd say to stay tuned for another update in the near future, but we may have entered into a boy who cried wolf type of situation...

Until the next time I choose the blog over sleep!
Caleb

The post that's 3 days late

As usual, I promised an update and then left you hanging. It's becoming my thing now, it would seem. Don't worry, my Dad already scolded me. As I am now a father, I feel even more inclined to do as my own father says, if only in a backhanded attempt to get my son to do as I wish. So far my experiment has yet to yield any measurable results. More tests are needed.

Look at mah face!

On Tuesday we had another care conference. With all of Ezekiel's forward progress since our previous conference, our expectations had gotten a little out of whack. It took a little wind out of our sails, but it was yet another exercise in some good ol' fashioned expectation management. With everything Zeke has overcome it's easy to think "hasn't he done enough? Can't we just take him home?!" Sadly, that's still not going to happen anytime soon, but he's still keeping everyone on their toes and making some awesome progress.

"Stop moping about, old man, and fill everyone in on how awesome I am!" Ezekiel said rudely to his father. Fine, jeez, kids these days have no respect for their elders.

Here are a few things that came out of our conference:

• Zeke is scheduled to have another surgery on Thursday of next week. This surgery is to remove the blockage in his urethra. After doing this surgery, they will clamp the tubes in his kidneys and see if the small amount of urine that they are making will drain through his bladder. If this doesn't happen, he'll need another surgery to address that issue.
• They're starting to go up slowly on the amount of dialysis solution they put in him on each cycle. Part of the reason that he needs dialysis around the clock is because they're using such small amounts of solution. To get him on a regimen that manageable from home, they'll need to increase that fill volume from 25ml to around 200ml. They'll do this slowly because they're very worried that the larger volumes will negatively affect his lung function due to pressure it will put on his diaphragm.
• Orthopedics is supposed to be visiting Ezekiel soon(ish) to start addressing his clubbed feet.

In other news, he got off his sedation medication today! They were keeping him sedated because his lungs couldn't handle him being awake, but that's no longer the case, as evidenced by all the new pictures of him with his eyes open!

Frogs make the best hats.

Now that it's after midnight it is officially the 6th, which was Ezekiel's due date. Happy due date day, little man! I've prepared a happy due date song to sing him when I see him in the morning. I expect him to applaud, which would be the only reasonable reaction.

Until next time,
Caleb

Let's do math!

Fair marrow, good people!

A boy was born on the first day of the 11th month. Today is the first day of the 12th month. The number x represents the age of the child in months. Solve for x. Show your work.

x = 12 - 11

x = 1

The boy is 1 month old!

He's been so lazy this whole month. His mother says it's the morphine, I think he just needs some motivation.

Not a whole lot has changed since last we chatted. Oh, except for this:

This boy...

... became this boy!

Even Tony Horton would be proud of these results! Either they did a baby swap, or the dialysis is working.

On the lung front, he's made enough progress that they gave Ezekiel what they call a "pressure support trial". This involved changing the ventilator to a mode that makes Ezekiel do more of the work on his own. Normally the ventilator breathes for him. While he can breathe on top of the vent, it is giving him a set number of breathes every minute. During this pressure test, the vent does NOT give him breaths, it just supports the breaths he takes on his own. Ezekiel had these pressure support trials on Saturday and Sunday and did very well! Today he was a little tuckered out from all the hard work of breathing, but these trials will continue as his lungs get stronger.

Tomorrow brings our care conference that will hopefully have lots of information regarding Ezekiel's care plan moving forward. I'll try to check in tomorrow and let you know how it goes!

Until tomorrow?
Caleb

Thankful Thanksgiving

HAPPY THANKSGIVING FROM THE ZARTS!

 My kidneys may not work, but do you know another

3 week old who can make a sweet turkey like this?

I'm sorry to steal the blog away from Caleb for a day, especially because I don't write with any updates about Ezekiel. Rather, I write to answer a question many of us pose ourselves on turkey day...what am I thankful for? This year, I'm thankful for a lot of things. I am thankful to have my baby boy here this Thanksgiving. I am thankful to have a husband who makes me laugh all the time (even at inappropriate times). This Thanksgiving, though, I would really like to dedicate my "thank you" to all of you! It is going to sound very clique, but I have been completely overwhelmed by the amount of support Caleb and I have received since Ezekiel was born. During my pregnancy, one of the things we feared was that people would never get to know little Zeke. We feared that, if the worst happened, people would never learn his name and would quickly forget about his existence. I'm happy to say it seems the opposite has happened. Ezekiel is more popular than I've ever been!  He's also more popular than Caleb, but that's not remotely surprising. Caleb is from Fennimore after all. In all seriousness, I know that popularity is trivial and what I really appreciate is your sincere concern for Ezekiel's well-being.

This week I went back to work...reluctantly. It's been hard, very hard. I could go on and on about all the reasons it's hard. Do you kind of want me to? :) Don't worry, I won't. What I will say is that, for every reason it's difficult, there are about 10 reasons I am thankful. Let me list a few:

• I am thankful that, if I were to cry at work on my second day (I'm speaking purely hypothetically, of course), my co-workers would comfort me and continue to check on me all day to make sure I'm ok. 

• I'm thankful that when Caleb and I have come home from the hospital at 10pm and still have to make dinner, we find that our wonderful neighbors snowblowed (snowblew?) our driveway.

• I am thankful that my best friends check on me daily and distract me with pictures of their animals and arguments about what the best candy bar is.

• I am thankful that Caleb and I have a family that drops everything to visit the hospital, watches our dog, cleans our house, makes us food, and on and on and on... 

• I'm thankful that people I've only met once or twice and people I haven't seen in 10 years have reached out to us and supported us. 

• I am thankful that we have received more gifts, messages and kind words than we deserve. 

I am also thankful you are still reading this because it got, like, WAY too sappy. I guess the holidays + post-partum hormones + having a sick baby = one sappy momma. So let's switch gears. The other day, Caleb was changing Zeke's diaper and was farted on... twice.  I know that's probably happened a million times to you parents out there. But I was LOLing, if you will, because it was such a normal baby thing to do and Caleb jumped about 3 feet back in fear.  I've never seen anyone that scared of a little baby fart. Especially a 30 year old man who still thinks farts are funny. I'm thankful that your support rejuvenates me and allows me to find little things like that amazingly funny and special. So this Thanksgiving know that the Zart family is very, very thankful for you. We won't express our gratitude in the cool ways, like with presents and cold, hard cash. Instead, you get a universal blog thank you.  I hope it will suffice because it comes from the bottom of my heart.

I used to go out for drinks the night before Thanksgiving. I'd much rather be rocking my baby to sleep, even if it is in a hospital room.

Thank you,
Ezekiel's Mom

Dog with a blog

Did you know that the Disney channel has a TV show about a talking dog that has a blog? I've never seen the show, so I can only assume that his blog tackles the tough topics like where to bury his bones, which types of balls are the most fun to fetch, and how cats aren't evil, they're just misunderstood. But then again, maybe the whole show is just a metaphor for humanity. Maybe we are all just dogs with blogs. Whoa, that's deep, Disney... deep. Where am I going with this? Nowhere, nowhere at all.

On to the story of our young hero!

A very exciting thing happened on Thursday, we finally got to hold our son!

Even Jedi Masters need snuggle time with Momma

Moving Ezekiel from his bed to the chair to be held was quite the production, requiring 3 people to carry him and all his attachments. Both Jenny and I got to hold him for about 30 minutes and he was oddly calm the entire time. In fact, he just fell asleep and stayed asleep. I think he enjoyed it almost as much as we did. Finally being able to hold him was amazing. The only downside is that now we want to hold him all the time! I suppose that's an acceptable downside.

As we expected, we lost a little ground while Ezekiel was off dialysis last week, but his treatments began anew on Saturday. He's been handling the fluid exchanges much better this time around and actually seems at ease with the whole process. He looks slimmer, trimmer, and I dare say he's ready for swim suit season. You may think it's the wrong time for swimming suits, but not at the NICU. Here it's undies only, all day long. How else could he soak up the rays from that heat lamp at the head of his bed? You think that Adonis like figure takes care of itself? How little you know.

In the most recent of news, just today the care team started talking about Ezekiel's long term prognosis! This is very exciting! Previous to this, questions about the future were met with diplomatic answers telling us to worry about his current struggles. His continued forward strides now warrant these topics for consideration. Because of this, we'll be having another care conference next week to discuss Ezekiel's next steps. We're quite confident this care conference will be more cheerful than our last one.

Staring contest! I totally won. He'll think twice before challenging his old man again.

So all in all, it's been a good couple of days since we last checked in. Thanks again to everyone for their constant support as Ezekiel's situation continues. Jenny and I are very lucky to have so may people that care about our family.

Until next time,
Caleb

Whistle while you work

Why, hello there!

Awake and not losing his mind!

When last we left our young hero, he had just started dialysis. In the last couple days he's made some solid progress. After a few adjustments to the particulars of his dialysis treatments, both his toxin and fluid levels have decreased. Unfortunately, he has become increasingly agitated, which is tough to deal with. All we can do is hold his head and/or hand and try our best to comfort him from his bedside... it's not very effective.

Just last night, however, his dialysis was put on hold because he had some leakage around his catheter site. There was more leakage again this morning, which brought all the troops to Ezekiel's room to assess his situation. Thankfully he's not showing any signs of infection, so they're hoping that the fluid is weeping from the scabbing around the catheter and not dialysis solution leaking through his abdominal wall. Just to be safe, though, they're not going to use the catheter until Friday in hopes that Ezekiel's body will take care of the issue. We will lose most of his progress from the 3 days of dialysis, but that's an acceptable sacrifice to prevent an infection.

On the lung front, decreasing Zeke's fluid overload has been great for his lungs. Today, he graduated from his oscillating ventilator to a conventional ventilator!

Jenny approves the ventilation change

There are several differences between these two types of ventilation, but all you need to know is that this a very good thing! It means his lungs have made great progress in his short time on this earth. It also means that we may be able to hold him soon! You may also notice in the picture above that his little hands are now being covered by socks, this is because he cannot be trusted. The little punk has been trying to pull out his breathing tube and his dialysis catheter. We obviously can't have that, so the cute little owl socks keep him in line.

Until next time!
Caleb

Snow days are the best days

Snow snow snow!

Today, you may have noticed, there was snow. Something else happened too...

Ezekiel with his army of Star Was plushies

Ezekiel is 2 weeks old! This little kid has packed a lot of action into a short amount of time, but even with grim prognoses all over the place, he's still kickin' some tail. The last time we talked Ezekiel was still making solid lung progress and we were waiting for his dialysis catheter to heal. Well, the last few days haven't been great for our young hero. He's been requiring more lung support and has been increasingly uncomfortable and agitated. Some of this was because his pain meds switched, but the other piece is that his fluid retention was starting to have a negative impact on his lung function.

A beer belly at 14 days old... Impressive!

On top of all that fluid trapped in his body, he was retaining all kinds of waste that his kidneys are supposed to be clearing. Today, that toxin reached dangerous levels and we were forced to pull the trigger on dialysis. We were hoping to let that catheter heal for 2 weeks, but 8 days was going to have to be enough. I think this kid just likes snow. Remember how it was snowing on the day Jenny went into labor? Fun fact: it was also snowing on the day we closed on our house and the day Jenny and I got married. So, don't yell at the snow, love it because it loves you back. All it wants is to wrap you in a cold, wet hug... everyone's favorite!

Starting dialysis was a huge deal, we've been waiting for this day ever since week 20 when they told us he would need it. We were terrified the catheter would fail or leak, but that didn't happen! Ezekiel handled all the fluid exchanges like a champ! There is still danger for that type of stuff to happen, but getting through the first few fluid exchanges was very exciting. Ezekiel even seemed to be at ease through the whole process, which was in stark contrast to the highly agitated state he'd been in for the last two days. We're starting with very small amounts of fluids, so his toxin and fluid levels aren't going to go down very fast, but it's a good start. They'll start to ratchet up the numbers as Zeke tolerates it and the more fluid they use, the more effective it will be. Right now all of that fluid exchange is being done by hand by the expert nurses in the NICU. But once he's big enough, he'll be able to use this dialysis machine...

I thought this was a fax machine from the mid 90's, turns out it's a dialysis machine. I wonder how long it's been since they've updated this design...

Another exciting thing that's happened is that Ezekiel is finally getting some of Jenny's milk! Up until this point, he's been receiving all of his nutrition from IV fluids. Now he's getting the good stuff and he seems to love it. Why wouldn't he love it, though, it was made just for him!

Thanks again for reading and caring,
Caleb

Day 12, surgery 4

Greetings and salutations!

Today Ezekiel had his 4th surgery in his young life. This one was to install a Broviac catheter, which is a more permanent IV site. They were previously using his umbilical stump, but that was no longer stable. He handled the surgery like a champ, as usual. It's insane to me that my son having surgery has become an almost daily occurrence, but here we are. In other news, he is no longer on his nitric oxide, which means that his lungs are handling gas exchange more efficiently! His oscillator settings also continue to improve... like a boss!

This dude has got some elf ears going on

That's it for updates, so today I also wanted to cover something that's been on our minds since week 20: expectation management. I've shared a lot of Zeke's progress with you, but I haven't shared what his condition looks like long term.

Firstly, let's cover the lungs. He's made some great progress lately, but he's certainly not out of the woods. Remember, it was only a week ago that they felt his prognosis was so grim that they considered ending treatment. It is possible that he will progress enough to no longer need lung support, but it is also possible that he could need to be on a ventilator for years. That doesn't mean he'd have to be at the hospital the whole time, there is a home ventilator that Jenny is more than qualified to operate.

Secondly, his kidney issues. There is no scenario in which his kidneys get better, kidney damage cannot be repaired. We are currently waiting for his dialysis catheter to heal so he can start peritoneal dialysis. At first, this form of dialysis must be done by hand, once an hour, around the clock. Once he gets bigger, he would be able to handle larger volumes of dialysis solution and could use a dialysis machine. If dialysis is successful, we've been told to expect a hospital stay in the range of 7 months, so this will be our home away from home for some time! Jenny and I would eventually be trained to use this machine and could perform dialysis at home until he is big enough to get a kidney transplant. He'll need to be about 20 pounds, likely around age 2. Even after all that, it's still not over. Transplanted kidneys only last about 10-15 years. When his new kidney fails, he'll have to go back on dialysis and wait for another transplant. This is all best case renal care. On the other side of the spectrum, we have the ever dreaded worst case. Ezekiel's dialysis catheter could leak, and he could get an infection in his peritoneum. These infections are difficult to treat, and if treatment is unsuccessful, it would be fatal. But if Ezekiel's peritoneum is half as tough as he is, he might not even need antibiotics. Give that dude a tums and let him do his thing.

Jenny doing oral care. One of our favorite parts of the day!

All these are just possibilities though, and Ezekiel will continue to write his own story. Whatever happens, his mother and I will always be right next to him, every step of the way.

As always, thanks for reading and for caring.
Caleb

Three less tubes

Good news, everyone! (If you read this first line as if it were spoken by Professor Farnsworth, you win a prize)

Young Mr. Ezekiel has made some amazing strides in the last two days. His lungs have made marked progress both days which has elicited some surprised reactions. Several of his doctors have commented that his oscillator and oxygen settings look better than they should, and that he is not at all where they were expecting him to be. Just two days ago he was getting 70% oxygen, and today he's at 26%. This is huge because the regular air we all breathe every day is only 21% oxygen. Don't worry, I just learned that too. The next step is to wean some of the settings on his oscillator so they can get him down to a regular ventilator. Once he's on a ventilator, Jenny and I may finally be able to hold him for the first time. This is another milestone that we cannot wait for.

Who gets to hold him first? I say we arm wrestle for it.

Another exciting thing happened today, Ezekiel had both of his chest tubes removed! These were placed shortly after birth to remove excess air from his chest cavity that had leaked from holes in his lungs. His lungs have since closed those holes and the chest tubes are no longer necessary. They also removed the arterial catheter from his foot since they need to draw blood less frequently. Hurray for less man made holes in his body!

There has also been a lot of discussion on when and how to be using his brand new dialysis catheter. He actually has standing fluid in his stomach cavity and they're able to drain small amounts of said fluid using the catheter. They have to be careful though, because if they take too much at one time, it can drop his blood pressure which we all learned the hard way.

Zeke is also at a serious risk of infection, due to all the aforementioned man made holes in his body. We've been advised to restrict visitors and now wear masks some of the time while in his room. This is a bummer because we love showing him off, but we will do what we have to to keep this little guy safe. A doctor from infectious diseases visited yesterday and it appeared as though Ezekiel's reputation preceded him. That doctor said that he'd heard Zeke was "one tough SOB". Jenny didn't seem to understand that she'd just been insulted.

Coming to a theater near you! (Thanks for the pic, Jillian)

Tonight Jenny and I left the hospital for the first time in over a week and are spending the night at home. As awesome as it is to have the option to stay at the hospital, those sleep rooms have a twin bed, so we're excited to sleep like grown ups again.

Thanks again for reading and for caring!
Caleb

1 whole week

In two hours, Ezekiel will be one week old. It seems crazy that he's only been with us for one week, he has packed more insanity into one week than Shaun T ever could!

Momma bear with her cub

Today was a good day for little Ezekiel. Not only was his dialysis catheter surgery a success, he crushed it! The surgeon and his team did an awesome job and told us that Zeke was a champ the whole way through. He had no scary drops in his stats, and one report claims he told the surgeon "I don't need no anesthesia!". Don't worry, we're working on his grammar.

Post surgery: He's holding his bandage to the wound. The nurse tried to tape it down and Zeke slapped her hand

This new addition brings the total up to 10. 10 tubes running into this tiny body. This has got to be some kind of record. Now hopefully we can let that tube sit for a while, because the longer it has to heal the less likely it is to leak and cause infection.

Short and sweet 'cause it's time for bed!
Caleb

To the future!

Hey everybody,

My apologies for the radio silence. I didn't mean to leave you hanging after my last post, yesterday was just a busy and emotionally heavy day. My goal with this blog has always been two fold. Number one, to help people get to know Ezekiel. Normally a new parent would want to parade their child around, show them off, and tell everyone how proud they were of their kid. Since I can't physically introduce the world to my son, this is the avenue that I have chosen. My second goal is to keep the blog as lighthearted as possible. Ezekiel's issues are deadly serious, but I'm not trying to depress you like a Sarah McLachlan commercial for abused puppies. Yesterday, I would have failed in my second goal, today I'm not so sure I can accomplish it either, but this update is important. So here we are, one day later... let's catch up.

Day 5. Even though heavily sedated, he'll sometimes give you a  little squeeze.

We woke on day 5 to find out that Ezekiel had had a pretty quiet night. His lung numbers were looking good, and he had gotten a little pee out of both of those kidney tubes, which was great news. We also learned the hard way that he was becoming increasingly sensitive to noise and commotion. On several occasions, noise would cause his oxygen saturation to drop and his alarms to blare. This is always alarming... get it? Alarming?!

The afternoon brought a full team care conference, which is a meeting with all of his primary caretakers. It included at least 5 different doctors of varying specialties, 3 nurses, and a couple other peeps. Adding Jenny and myself to that room packed it to the rafters. They called this conference for the exact reason we were fearing: Ezekiel wasn't getting better fast enough and they had reached the point where there was no clear way to proceed. They presented us with 3 options and left the choice up to us. We were dreading this possibility. The gravity of this decision weighs more heavily than I know how to put into words. Suffice to say that yesterday was a day I will never forget, and hope I never have to face another one like it.

They opened with a comprehensive list of what they knew to be true. Ezekiel's lung disease is bad. They haven't seen enough improvement to say with any certainty that his lungs will ever be able to support him on their own. Ezekiel's kidney disease is also bad. People call it different things, end stage renal disease, renal failure, the semantics don't really matter. What matters is that his kidneys don't work. Yes, they are creating a tiny amount of urine, but they're not clearing waste from his body. These two issues also exacerbate each other, making them more difficult to treat. One on its own might be treatable, but the two together may be too much for his tiny body.

I hesitated to talk about the specifics of the choice we were given, but Jenny and I decided it was important for Ezekiel's story. I share these with you not because I want you to tell me the choice we made was right or wrong, the whole point of this conference was that there wasn't a wrong choice. Here are the options we were given:

• Pursue peritoneal dialysis. This is the highest risk/reward option. This would require putting him through surgery to place the dialysis catheter and open him up to potential infections and other unpleasantries. Since Ezekiel is as small as he is, the likelihood of success isn't great, but if it does work, it is his only chance at having a life.
• Wait and see. This would be exactly what it sounds like. We could wait to see if his lungs get better in the near future and then decide how to address his kidney issues. 
• Make Ezekiel comfortable for the time he has left. This one doesn't really require any more explanation. 

Thankfully, Jenny and I both agreed that we would pursue peritoneal dialysis. A disagreement here could have been nearly impossible to rectify. With no official recommendation to guide us, we can only do what we think is best for Ezekiel and his specific situation.

Saying goodnight after a hard day

Today is day 6, and we awoke feeling more confident that we had made the right decision for us. There may be people reading this blog that have been in a similar situation and made a different choice, and that is OK. I said it above and I'll say it again, there was no wrong choice. But when I look at the odds Ezekiel has already overcome, it's clear that he's not giving up. We were told he might die in utero, he didn't. We were told he might die during delivery, he didn't. We were told he might die during his first night of life, he didn't. We were told he might die during transport to the UW, he didn't. He is fighting for his life and we're going to fight right along side him.

I think he's frickin' adorable! I'm sure I'm not the slightest bit biased.

Totally natural family shot.

Ezekiel is currently scheduled to have his dialysis catheter installed tomorrow. It will be several days before they can use the catheter and find out if this treatment will work for him. For today, we're spending every second we can at his side.

Thanks again for reading and for caring about my main man, Zeke.
Caleb

Day 4

Good afternoon everyone!

Day 4, yo!

I'll start with yesterday's activities, since there was some excitement. We spent the morning and early afternoon talking to every doctor and that came into our son's room. It being Monday, we also met a lot of new caregivers and I am constantly amazed by how genuinely these people care for our son and every other baby in this unit. It takes a special kind of person to devote their life to this field, and devoted they are. Not a single person has looked like they're just lazily going about their day at work. Something happened yesterday that exemplifies what I'm talking about. In the middle of the afternoon Ezekiel finally had a break from his almost constant treatments and checks and I jumped in, scooted up a chair, and started to read him his first Star Wars story... don't judge me! From what I can only assume was his overwhelming excitement from hearing the first few sentences of the literary masterpiece Rogue Squadron, he flailed his arms and his oxygen began to crash. We've seen this before, his oxygen will dip and his nurses and RTs will tweak some settings or do some magic and he'll recover quickly, but this one wasn't like the others. His oxygen crashed all the way into the single digits (it's supposed to be above 90). His room exploded with activity, I don't even know where half of these people were hiding. Within a minute, there were at least 10 people in his room, many of them filling a role of some kind while others were on stand by if the worst happened. Thankfully the worst did not happen and he recovered after what seemed like an eternity.

Minutes later, we had another conversation with Zeke's urologist and he told us that they wanted to try again to get a catheter into that left kidney. He also reiterated that Ezekiel's condition was one of a kind. I don't think I've mentioned this before, but after they drained the bladder and the kidneys did not drain, they diagnosed Ezekiel with bilateral UPJ obstructions. I'm not even sure what UPJ is short for, but what it means is that there is an obstruction at the connection where each kidney attaches to its ureter. The ureter is the tube that carries urine from the kidney to the bladder. Our urologist said that he has never seen a baby with this type of obstruction make it to birth, so we are in uncharted waters without a lot of literature or studies to guide us. This is exciting and terrifying all at the same time. Ezekiel has already beat the odds a couple of times and we hope hope hope he can do it again.

They carried out the procedure of placing another kidney catheter and this time it was a success!

Ever wondered how many adults it takes to move a 5lb baby from his bed to an operating table? This many.

The success of this procedure lifted our spirits from the rough day and sent us to bed feeling more hopeful than before. We slept here at the hospital in one of their sleep rooms, instead of Zeke's room, so we could get some better rest. That didn't stop us from coming in to visit Ezekiel in the middle of the night, though, it's just hard to be away.

We woke this morning to hear that Ezekiel had had a good night. His blood gasses were looking better. Oh, you don't know what that means? Well, then you're in good company, 'cause I don't either. All I know is that the nurses were excited about it and so was Jenny.

Sadly, later in the morning that good feeling fled, and I hate to end this post on a negative note, but this update is important. During the doctor's rounds we found out that some urine had collected in his kidney catheters, but they thought it was likely that this urine had been trapped in his kidneys for a while instead of it being newly made. They base this guess off of the fact that the levels of creatinine, which the kidneys filter, have continued to rise. Even worse, Ezekiel's lungs have made no significant improvement since yesterday. This is terrible news because if his lungs do not grow, he simply will not be able to survive. They plan on giving him a dose of a drug that he's responded well to in the past, but they can only do that so many times, Ezekiel needs to be able to grow his lungs on his own. Today is going to be an all important day for our little Zeke.

I want to take this moment to thank everyone for the outpouring of support. Both Jenny and I have received countless messages and that lifts our spirits greatly. We haven't had time to respond to everyone individually, but please know that they are appreciated.

Thanks for reading and for caring.
Caleb.

Ezekiel is here!

Wow! I can think of no other way to sum up our last few days. They have been a whirlwind of activity and shattered expectations. Ezekiel is here, but it doesn't yet seem real. We're overjoyed to have him out here with us, but that joy is tempered by all the difficulties we know he will face. So far, we know that this kid is a fighter! He has already overcome a few critical hurdles that have all had the most terrible of possible outcomes. Ezekiel took them all on like a champ!

Let's start back on Friday morning, October 31st. At 4am Jenny started having contractions. She had had a few random contractions over the last week or so, so at first we didn't worry. But after an hour and a half, it became obvious that this was a little different. We hurriedly got ready and headed into the hospital on the snowy roads. I was excited to see snow in October, choosing to call it a good omen of some kind. By the time we got to the hospital, Jenny's contractions were only 5 minutes apart and getting more intense. After first confirming that she was indeed in labor, the team at Meriter hospital tried their best to stop it. Zeke wasn't ready yet, his lungs were so immature that they worried that he would not survive outside the womb. They knew they couldn't hold off labor to get to that November 17th target date, but they wanted to buy 48 hours to give a cycle of steroid injections to help kick-start Ezekiel's lung growth. The drugs slowed her labor, but Jenny was still having regular contractions. After 21 hours of labor, it became clear that Ezekiel would not be halted any longer, and letting the labor continue to progress naturally could be fatal for the little guy. They rallied the troops and he arrived via Cesarian section at 1:15am, November 1st.

Scrubbed up selfie!

This was where he encountered his first hurdle, simply making it out of the delivery room. We had been told that without his full round of steroids they feared his lungs might not function at all. After getting him out, they whisked him off to an adjoining room where the NICU team waited. I was able to join them, but Jenny had to stay to get sewn up. After a few torturous moments, I heard what I had been waiting for, a high pitched cry! He was able to breathe, but boy was he struggling. They were able to place a breathing tube to support his lungs and were ready to move him just as Jenny was being wheeled out of the operating room. We both got a little misty as we enjoyed our very first moment as a family.

Not quite how we envisioned it, but we will take it!

Ezekiel was critical, but the NICU team let us have a couple minutes with our son. This brief meeting was the last time we saw him for the next 9 hours. That's how long it took to stabilize him and start his much needed treatments. Our first report from Zeke's neonatologist wasn't too cheery, but the silver lining was that we could finally see him.

Under all those tubes, there is a boy

Although he was stable for the time being, his condition was still very serious. His lungs were, and still are, very underdeveloped and may not be able to function well enough to support him in the long term. But for now, they were responding to treatment. On the kidney front, they were able to place the catheter past his PUV and drain his bladder. Now we had to wait to see if he created any urine on his own. We spent as much time at his side as we could, and he got almost constant attention from the amazing staff at Meriter Hospital. He also got to meet some of his family! Both sets of Grandparents, his uncles Micah and Josh, aunts Jen and Michelle and every single one of his cousins came rushing to our side to give their support and celebrate the hurdles that Zeke had already crossed. The little ones had to wait outside Ezekiel's room, but he knew they were there. I wish I had gotten a picture, but forgot in the flurry of the moment... that was a lot of cute kids in one place. That night, we rested, not having slept the night before, confident Ezekiel was in good hands.

Just over 24 hours old, look at that hip flexibility!

On Zeke's first night, his lungs did well, but his kidneys did not. He hadn't made any urine and was retaining lots of extra fluid because his kidneys weren't clearing any of it from his system. You can see it in the picture above, his face is very puffy. This was super dangerous for Ezekiel because once you get too much fluid in your system, that fluid will end up in your lungs. Zeke's lungs were so small already, that any additional fluid would likely be fatal. Getting that fluid from his body became top priority. To do this, they decided he needed to be transferred to the UW Children's Hospital where there is a team of pediatric urologists (bladder doctors) and nephrologists (kidney doctors). This was terrifying because, normally, they would never try to move a baby as critical as Zeke. They felt that in his case, though, it was worth the risk. To get the transfer rolling they needed parental consent. Our neonatologist sat us down to go over the paper work. It was hard to focus on anything other than the "Risks" section, because written there in all caps were the words "POSSIBLE DEATH". The doctor made sure we understood this risk, describing it as a better than 50/50 chance of survival, but he couldn't get any more specific than that. It was what Zeke needed, though, so we signed on the dotted line. After signing the paperwork, we got our first real alone time with Ezekiel. This was the very first time they cleared the room, shut the door, and let us be alone with our son. They never said anything, but we all knew why. After some tearful moments, we opened the door, stepped to the side and waited while his room exploded with action.

Look at that sweet ride!

This part was agonizing, but if I may skip to the end, he made it! Jenny got to ride in the ambulance with Zeke and I followed in our car. Everything went as well as it could have, and the doctors were all impressed with how well he handled the travel. They were still in the process of plugging in some of Zeke's tubes when the nephrology team came to meet with us. They already had a plan and wanted to execute it now. Their biggest concern was that his kidneys were still not draining properly, even with the catheter in his bladder. This meant there was another obstruction higher in his renal system. The plan was to surgically install a catheter in both kidneys and drain them manually, skipping the rest of the system. We were asked to leave the room and they got started right away. The procedure was only partially successful, they were able to install a catheter in the right kidney, but not the left. They were happy with this for now, though, and wanted to wait out the night before maybe trying again. After all this, we finally got to see Ezekiel again.

Check out the new digs!

We had a quieter night, our family visited and Jenny and I both read Ezekiel his very first bed time stories. He had a good night and is still going strong on the morning of his 3rd day in this world. Jenny and I remain ever hopeful and unwilling to leave his side unless they make us. We love this kid and want to spend as many moments with him as possible.

Until tomorrow,
Caleb

From our 20 week checkup to Ezekiel's birth...

Welcome to Ezekiel's blog! I assume you've only wandered onto this page if you already know Jenny and I, and have more than a passing interest in Ezekiel's well-being. For that, we thank you. We plan to keep this page updated and hope this proves to be an effective medium to keep everyone informed. This first post is a little lengthy because there are multiple factors affecting Ezekiel’s health, but I’ll try to keep it as concise as I can. Now, onward to the tale of Ezekiel James Zart, Zeke, or Double-Z, whichever you prefer!

At our 20 week ultrasound, Ezekiel was diagnosed with a Posterior Urethral Valve (PUV) and bilateral clubbed feet. A PUV is a type of obstruction that occurs when there is an extra flap of skin in the urethra, blocking urine from leaving the bladder. This leads to an engorged bladder and excess liquid in the kidneys, a condition termed hydronephrosis. So much urine was backed up in Ezekiel that his right kidney had ruptured, leaking urine and forming an urinoma (cyst containing urine). Since this blockage traps all the fluid inside the body, that also means there was little fluid in the womb for Ezekiel to “breathe”, which is critical for lung development. There was also concern about his enlarged kidneys putting pressure on the rest of his organs and possibly impeding development. To help with both of these issues, we traveled to Cincinnati’s Fetal Care Center for an amnioinfusion and kidney aspiration (draining of the urinoma) at 22 and then again at 26 weeks gestational age.

Jenny geared up for her first fetal surgery. She may have a promising career as a lunch lady!

The amnioinfusion went well both times, but the kidney aspiration was only successful the second time. Sadly, the urinoma refilled by the next morning, which meant his right kidney was still leaking fluid. After the second intervention, the added fluid disappeared in just two weeks and it became too risky to attempt another intervention. This means Ezekiel has been without any measurable amniotic fluid since week 28. He had already passed the most critical weeks for lung development, however, so we remained hopeful. Sadly, at 34 weeks gestational age, an MRI revealed that Ezekiel’s lungs were much smaller than they should be, a condition called pulmonary hypoplasia. This diagnosis carries a wide range of possible issues. He may be able to breathe on his own, but there is also the possibility that he may not have enough lung function to support life even with medical assistance. Hopefully, he'll land somewhere in between those two.

His prognosis is still uncertain since it's impossible to be certain how well his lungs and kidneys will function while in utero, but after countless appointments, ultrasounds, specialist consults, and those two fetal procedures, this is what we know...

The first hurdle he must overcome is his lungs. There are lots of potential treatments, and what they do will depend on how much support he needs. We've been told to expect him to need a breathing tube at the very least. Once he is stable, we can move on to his kidneys. He’ll need a surgery to remove the PUV and then they’ll assess his kidney function. It's likely that his right kidney will not function, and if it does, it will be at a significantly decreased level. His left kidney has a better chance, but retaining extra fluid for extended periods of time causes damage to the nephrons in the kidney, decreasing function. If he has little to no kidney function, which we've been told to expect, he will need peritoneal dialysis. This would require surgically installing a dialysis catheter in his stomach cavity and using that catheter to pump a dialysis solution in and out of that cavity on a regular basis to remove the waste from his body that the kidneys normally filter. There are risks associated with this treatment of course, but we've been told its infant success rate is as high as 80%! He would continue on dialysis until he’s big enough to get a kidney transplant, which would be around age 2. The last concern is his clubbed feet, which can be corrected with orthopedic therapy and sequential casting with no lasting negative affects.

With all of these considerations in mind, we've been scheduled for caesarian section on November 17th, just 3 weeks shy of his original due date of December 6th. He’ll likely be in the hospital for a while, but we can’t wait to get him home so he can enjoy his awesome room.

Han and Chewie have promised to guard Ezekiel's dialysis machine with Wookiee-like fervor.

Thanks to everyone for your support, especially our family and friends who we've already been leaning on through all these doctors visits and changing diagnoses.

-Caleb