Final Resting Place

Yesterday, November 1, on All Souls Day, we buried our son William Elliot Padgett at Chapel Hill Memorial Gardens in Dixon, IL. He is in the same cemetery as his uncle Michael Allen Padgett and his great grandparents Padgett and Pacileo.
Close family attended the burial and graveside service.

Jeff and I drove out to Dixon on Monday to make sure we were happy with our decision to have William's final resting place be in Dixon at Chapel Hill. We ended up making a lot of decisions regarding the service while driving, looking up scripture, figuring out what parts are even supposed to be part of the graveside service.
We had initially wanted to wait longer for the burial, to have more time to organize it and give people a chance to come, and at first we also didn't understand that the end of life process can be accelerated for preemies (meaning there's a rush to get them into the ground).
So.... we changed our plans and changed our plans again (thanks, family for being so incredibly accommodating and understanding) and settled on yesterday, Tuesday, because it was going to be a beautiful day instead of a stormy day. And it was absolutely beautiful yesterday. We wanted to do something nice and special for William, and I think we were able to do that with the help of our families.

Before the burial, when Jeff and I arrived to sign some final paperwork, the funeral director offered us a surprise. She had previously cautioned us and prepared us for not looking at William, in case he didn't look good. When we got there, she said something to the effect of: I can with good conscience encourage you to see him one last time, if you like.
This was probably the best part of our day, even though it was one of the hardest parts. We got to hold William, being ready to part ways with his physical body. We got to say goodbye when we were ready to say goodbye.
We were able to place the picture of ourselves where we wanted it to be in his casket, place the coin with part of Psalm 23 near his heart, and have the Teddy Bear that came with the casket give William a big fat bear hug.
We were able to give him a kiss on the forehead.

We asked the pastor from Jeff's parent's church to lead the service, because we figured we'd all be too emotional to do that ourselves (and right, we were). His message really touched all of us, and I am continually amazed by how William touched so many lives and how many people love him, who have never even met him! We also had a time where our families could share any memories or thoughts they wanted to share. It was really meaningful to hear what everyone had to say. It was good to hear that Jeff and I are now parents. That will always be part of our identity from now on.
We all sang the Psalm 23 song as a group that Jeff and I sang to William before he died. After the Prayer of Committal, we all placed a rose by William.
I created a little poster with some pictures of William and of us as a family, that we put up as well.

After everyone had left, Jeff lowered William into the ground with help of the groundskeeper, and then he filled William's grave. We were very glad they gave us the opportunity to do that for William (apparently that's not a thing). Hard as it was.

Post burial, Jeff's parents hosted lunch and it was nice enough outside for us to spend a lot of the afternoon in the backyard.

Jeff has been better than me communicating and responding to people, I'm still working on it. I prefer to interact with people in person right now, I guess and it changes from day to day whether I'm ok talking or need space. It's hard to relive William's passing and the events afterward, and having to say that out loud. Saying it makes it more real. I don't really know how I feel right now. We've been very busy, and focusing on making William's burial nice for him has taken up a lot of brain space. That brain space is now looking for something else and I'm starting to feel the emptiness creep in. There are a few more projects I can focus on, with updates to follow...

My Shepherd Brings Me Home

Thursday night, just before midnight, William went to be with God.
I held him for a while until his heart stopped.
Jeff and I sang him a song based on Psalm 23. William listened, and I think his heart kept slowing down, and it stopped shortly after we finished the song. He seemed very peaceful.

William had had a pretty rough day. It started out ok, but he had ups and downs. At some point in the afternoon, his heart rate and saturations were really bad and his blood pressure was high, which was strange. They tried a few things, eventually suctioning his breathing tube (which is routine) and after the sixth time or so, they got a little plug to come out and his stats all came back up and William became his self again. We thought the coast was clear, so Jeff left for a rehearsal in Elgin. While I went to get dinner at the hospital, William started doing worse again. Not saturating with oxygen as well. The doctors tried a few things, offering a bit more support on some of his settings. Giving him fresh frozen plasma. They told me to tell Jeff to turn around when it didn't look like some of those things were helping.
In addition, William had been leaking a lot of fluid and more air from his abdomen. Foul looking stuff. Possibly mixed with stool, and his body (his neck in particular) looked more puffy. His belly was starting to be bluish. His lactic acid levels in his body we're increasing, indicating dying cells. The ph level in his body was also bad. All of this, indicated that his intestines were dying, and there was nothing we could do, or could have done.
Once Jeff got back, they tried suctioning again, but that didn't help William. One of the things the docs had told us was that William's heart might just start slowing down gradually when we were nearing the end. We had started seeing his heart rate more normally earlier in the day, and by evening it was very slow. Slow enough where they wanted to make sure I could hold him before it was too late. So I held our son, and we talked to him, and sang to him. And tried to not cry too much. His eyes had opened all the way by Thursday, and even though he probably couldn't make sense of what he saw, he did move his eyes and kept them open, looking at us.
We stayed with William for a while after. Taking turns holding him, giving him a bath and changing his diaper and dressing him. It was awful saying goodbye, leaving him there. I don't know how we did it.
Friday, we went back to the hospital to drop off a few things and to check in with a few people, including William's main doctor. The ISCU team has turned into family over this short time and today it feels really strange to not be there.
Jeff and I appreciate so much everything that everyone has done for us and William, all of the support we've received.

Thank you for praying for William.  God performed amazing things with William, surprising OBGYNs, MFMs, and Neonatal doctors.  We are incredibly blessed even to have gotten to know him and his personality over these past two weeks.  Please bear with us as we go through grieving his loss and we may not be able to communicate with everyone as we would like to.  We will continue to do a few more posts to keep people updated.

Thanks and we love you all, and we're sure William would say thanks for praying for him so that he could have a fighting chance and be able to meet his family.

We leave you with the song we sang, Psalm 23 in the words of Isaac Watts:

My Shepherd will supply my need, Jehovah is His name,
In pastures fresh He makes me feed beside the living stream;
He brings my wandering spirit back when I forsake His way,
And leads me for His mercy's sake in paths of truth and grace.

When I walk through the shades of death His presence is my stay,
One word of His supporting grace drives all my fears away;
His hand in sight of all my foes doth still my table spread,
My cup with blessings overflows, His oil anoints my head.

The sure provisions of my God attend me all my days;
Oh, may Thy house be my abode and all my work be praise;
There would I find a settled rest, while others go and come;
No more a stranger nor a guest, but like a child at home.

Happy 2 Weeks!

Today marks William's 2 weeks milestone. So much can happen in one week.
Last week at this time, I was feeling completely distraught and it was very difficult for me to make myself take that 1 week photo.
Today, even though we're dealing with more complications, William  has overall been responding well to the support he is on and for now seems to be in a slightly less dangerous place.

He pooped a little again overnight and today.

Today was actually a bit up and down again (and I continue this post later in the day). He really doesn't like being messed with (poked or moved or anything really) and his vitals reflect that. It's hard to see him not doing as well. Jeff and I got in a decent amount of contact time today, and William's eyes are opening all the way now sometimes. That's pretty exciting for us.

So the big news for today were the results of another brain ultrasound. Last week, some of it was inconclusive, but this week we could definitely see where some of his brain tissue/cells seem to have died and other areas that may soon be affected. It looks to be very likely that he will face some kind of disability, be it blindness or lack of control in his legs, or all of the above and then some. Too hard to tell at this point. That, plus all of the other things William has been dealing with made it hard for us to want to leave him today.

By the time we left, we had had to turn up some of his meds and breathing machine settings again, and that's scary for us. Once that happened, he seemed to have ok vitals again, but the question still is: how much longer can William sustain this?

His blood cultures have still been returning positive, meaning he still has the infections in his system. So he'll have to stay on antibiotics for a while. we pray the meds will be able to wipe out the harmful bacteria in his system soon so he can get at least the tube out of his belly so he can get milk.

Fly the W

William had a good day yesterday despite having contracted MRSA. His vitals stayed consistent and we were able dial dial back on some of his support
 He even got off of the insulin for a little bit overnight, although he's back on it for now (as long as he's on the steroid and receiving antibiotics, he'll need a little extra help with the insulin).
We'll see what today will bring... hopefully we'll be able to reduce his blood pressure medicine a little more, reduce the oxygen a little more.

A few developments that we're hoping will get sorted out/that happened today
His line through which he receives blood transfusions seems to have gotten clogged, so they had to take that out last night. They managed to replace it. Hurray! Now he can get his blood transfusion.
There seemed to be an issue with his Penrose/straw air drain in his abdomen. The surgeon stopped by, did something and made it better. No second surgery needed yet, let's pray it stays that way! There had been more air that collected, and he did better after it came out.

With all of the Cubs excitement going on (we were driving through it on Saturday night, slightly scary!) we see "Fly the W" everywhere and people all over have W flags. I like to imagine that the W actually stands for "William" and that everyone is excited for him, and rooting for him! 😁

William has been opening his eyes more and more every day. One of the nurses took a great picture, and we've seen his eyes open more. It's a little creepy, because we don't see much of the whites of his eyes. At this point, he can only really tell light from dark, and everything will look like a blur to him.
William likes to lay on his right side better and he gets better stats when he does! Not quite sure why, but we try to give him a little more right side time than left side time.

Superbug!

You'd think that we're already dealing with a lot, right? Well, when it rains, it really does pour... we received a test result for William that he tested positive for MRSA (Mercer). Which is a highly antibiotic resistant strain of bacteria. The hospital rarely has incidences of this, and of course William is one of the few to get it... thankfully, he's already on antibiotics for it, and the docs have pinpointed his antibiotics and paired them down since Saturday. William still has good vitals, although we haven't been able to reduce any more settings overnight really.
So, this MRSA situation is complicated for William because:
1) the infection could be living inside any of three possible different life support lines: His arterial line from which we draw blood, give fluids and meds and get blood pressure readings, his breathing tube, and another line which is important for some reason I can't remember right now. We can't remove any of these lines, so we have to wait until we get a clear blood culture, or until we can insert a fresh arterial line into William's arm.

2) Since William has the hole in his abdomen to drain the air that was surrounding his gut, he can't eat breastmilk. This means, he won't be able to grow as well. He also may experience stunted growth from the steroid he's on for his lungs. This may make it difficult for him to grow larger veins so that we could get another line.

3) MRSA could lead to some other serious diseases like pneumonia or Meningitis (I think). And one way they would have to confirm meningitis is by taking some spinal fluid and that would be probably too much stress for William to handle at this point.

4) We now have to scrub up before and after we approach William's incubator. Meaning, we have to wash and sterilize, put on gowns and gloves, before we can interact with him. Then to avoid spreading this thing some more, we have to wash up afterward, too.

William will now be isolated from the other babies, meaning he gets his nursery all to himself!
This is just one more piece of this difficult puzzle that is William's life so far... one infection wasn't enough, so let's make it two, and... how about we make it the big baddie that we really don't want a baby to get because it's hard to treat? 😕
Even though this is obviously a very serious development, and we're going to have another long week praying that the small infection and drainage site clears up well, we also can't deny that this is just a little ironic. Of course the littlest baby is going to turn into the most dangerous in the ISCU and of course, William is just going to deal with one more big thing...

We really really pray that he'll be able to cruise for a while without anything new popping up, so some of these things can resolve first. It's possible that he'll have to stay on the MRSA antibiotic for weeks, if it's in one of his important life lines. So we're hoping that the antibiotic will flush out the bacteria wherever it is, so that we can get a negative blood culture and so that William can heal without dealing with this.

Recovering for Today

William is doing better. He's still pretty beat up, but they've started slowly decreasing his blood pressure meds and weaning him off of some oxygen. He's been saturating well enough for them to be able to do that! Also, the doc here today tried to get the IV into his wrist again, but no luck and she said he was punching her ❤ good job being feisty, William! That he's feeling like that is good while he's dealing with an infection. Today has been mostly quiet for him otherwise. They're still monitoring his blood sugar and adjusting insulin. They've narrowed down the bacteria causing the infection, and tomorrow they'll get some test results back that will help them decide the best antibiotic cocktail for him (they expect to be able to stop some of what he's getting). So, because the steroid is kicking in and the antibiotics are kicking in, that's probably why he's doing much better consistently today. The steroid softens up his lungs, which allows them to decrease the pressure and the amount of forced breaths he receives from the ventilator.
They did say his lungs look pretty sick and pretty beat up, so we hope he can heal himself enough while he's receiving steroids to continue on the trajectory we're on.
The next big thing is that we really need to figure out whether the arterial line in his belly button is contaminated or not. And ultimately, they'd like to be able to have that line go into his wrist, because it's better for long term. So today we are grateful for William being in better shape and getting better oxygen saturation. Now Jeff and I just actually need to be able to get some sleep... he's been doing better at that than me, because I'm also trying to maintain/increase breastmilk supply (I went for a long time without doing anything on Friday while things looked so grim, so now I have to let my body get the signals again that we need to produce! Haha)

And on top of all last night, Granddad Pierce tried to fix our clogged kitchen sink, which kind of backfired.... so we were not only trying to understand the emergency surgery, but also trying to reach our janitor while trying to avoid the whole kitchen getting flooded with Drano sewage water... when it rains, it pours sewage in the kitchen! At least it will hopefully get fixed now, right? 😉

Emergency Surgery

So William just had an emergency surgery. It went well, but we have had an eventful night. Pretty much right after we got home, we got a call from ISCU informing us that they discovered free air around William's intestines. So, they informed us a bit of what that might mean, what the surgery would look like. Then we decided to head back up to Evanston to meet the surgeon and to be there to see William before and after. 

The surgery was minor, but for someone as big as William, anything is major. He needed a tube to be inserted into his abdomen to let the air escape and to let any fluid drain out. This was necessary, otherwise infection would fester and get worse. 

The good thing is that the tube is in the right spot and that it already let air and fluid escape. William's oxygen numbers actually seemed to improve some because the escaped air allows his lungs to expand better. 

William won't be able to have mother's milk until he is healed up, which can take anywhere from a week to two weeks. His feeding tube is now a suction tube to remove excess air and possibly fluid from his stomach. He'll still get his IV nutritional blend. 

This has been waaaaay stressful and we really need some rest. Jeff can probably augment this with some better details than me, I'm still kind of in shock about this whole thing.