Recovery Milestones

As the year goes on, there are lots of little dates to look forward to. Or in my case dread with anxious anticipation.
I dreaded Mother's Day, dreaded Christmas and Easter, dreaded each month that would pass. And now I'm dreading Father's Day. Last year, Father's Day was a very exciting time for us, this year, Jeff actually really is a dad, and William isn't here.

So some of the things that really helped along the way dreading these days, were things to look forward to, like designing William's gravestone. I loved being able to do something that feels like a gift to him, something to make the place where we can go to remember him, where his physical body is, a more pleasant place, a meaningful place.

The designing process started back in February, and the stone was delivered just last week, right in time for Memorial day.

The dinosaur is meaningful, it is a similar dinosaur to the one William had on his name plaque at the hospital. The dinosaur was a recurring theme, at my brother and sister in law's wedding last year, we had a little green dino named Edgar who completed our wedding performance ensemble (we weren't really hinting at expecting at the time, but we also were). Then when we saw his name plaque, his dino decoration looked just like Edgar! So this is just Edgar's little brother keeping him company :)

I'm so relieved that this milestone is now passed. I can touch the stone and feel more freedom to leave flowers or whatever else there. I feel less dread going to visit that little place because it's more complete, and while that chapter will never really close, it feels more concluded.

This summer will be difficult, because I'm going to remember how last summer was for me, in and out of the hospital more times than I can remember, each time afraid that we were miscarrying. So at least knowing that in advance, I'm more prepared to acknowledge that those feelings will be there, need to be felt and I have hope that God will keep me from falling back into the dark pit I was in at the beginning of the year.

I'm so grateful for our family and friends' support, support of mentors and counselors, finding my way back into exercise and my exercise buddies near and far! And actually feeling joy again!

Healing Slowly

The healing process is slow. I (Melissa) have been doing my fair share of talking and processing, crying and lots of ignoring of what is now our reality since my last post. It feels really strange to have to get back into a routine that doesn't involve William, not going to the hospital, but also feeling like I'm floating around at home. It's hard to be at home where a lot of our memories are. Thankfully, this past weekend I got to travel out of the city with Jeff and I didn't really have any associations with William for where we were in Dubuque, Iowa. I got to spend some quality time hiking in nature, exercising and spending some time in my head in a good way. It was nice to spend time with people who didn't talk to us about William, unless we brought him up. Since my routine is nonexistent at home, it didn't matter that I haven't established one when we were away! Plus, I felt useful helping Jeff get to rehearsal, or however he needed assistance, haha!

I have mixed feelings about Thanksgiving. We'll be headed to the cemetery for the first time since the burial, seeing family and processing whatever expectations we developed about that holiday this year... we kind of missed not stopping by while we were out that general direction, but also agreed that it wouldn't make sense. I guess I feel that in this case it may have been nice to go against what "makes sense". I'll have to think about that.
We're still slowly working our way through cards that we've received.
I've got the ball rolling a little more with follow-up mental health care for me, and I am also expecting some more tests for myself that might give us more information for future pregnancies. My follow-up appointment last week confirmed that I'm on the right track physically for now, and I'm glad they were also checking my mental health and what resources I was aware of.
What stung a little today was starting the healthcare application and stating that we are going to file taxes claiming a dependent, but that we won't be applying for his health insurance...
I ask for continued prayers of healing for Jeff and myself, especially with the holiday season beginning this week. I pray that we will be able to experience peace and joy amidst the other feelings we will have.
Also, thanks for the continued prayers!

William Keeps Giving

Today we went to the Mother's Milk Bank of the Western Great Lakes to donate some of William's milk.
I weaned myself last week and had a bunch in the freezer that we hadn't delivered to the hospital. It was hard for us to go over there, but good. It felt good to see how William will continue to impact the world. Either through helping other Preemie babies and families by the milk donation, or by research that will be done on his milk that will continue to change Preemie protocol in health care.
This milk bank hasn't been around for too long, so I'm so glad it's an available resource to us. Plus, Jeff and I are relieved that William's milk won't have to go to waste (remember when I spilled the first full bottle of milk I pumped and cried for an hour afterward?).

Eventually, William's name will be memorialized on their Milky Way wall, as a baby whose milk helped other children.

The organization seems pretty cool, and the ladies over there were super nice.

In other news... we got our hands on a "W" car flag, so we flew that for a while on our car yesterday. Then we took it down because it made too many distracting noises while we were on the interstate...
We're flying the W in our apartment now and pass underneath it whenever we go into our living room.

I have been able to take some solid walks over the last few days, and I'm hoping to physically get back into shape by doing some yoga.

I tried my hand at playing violin a little bit for the first time yesterday at church. It felt REALLY weird to hold it. I haven't played since August sometime, so I'm also glad that my equipment is still in good working order.

My other crowning achievements of late include grocery shopping and cooking the occasional meal. And as helpful as it is to pour out my heart to the world via blog, I'm working on setting up grief counseling for myself.

Thank you to everyone who has continued to send prayers our way, and also for flowers and cards. We have trouble facing the cards every day, but are slowly working our way through them.

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.