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