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.

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. 

Down and Up

So the latest news has been very much up and down. William did not have a very good day yesterday, and by the time early afternoon rolled around, we had a pretty difficult chat with the doctors. William's numbers were looking so bad, and they were on a trend getting worse, where they were very legitimately concerned and expecting him to maybe not last the night. He's bounced back for now, but he has little wiggle room for us to support him more.
Anyways, we spent a good chunk of time deciding how we may want to spend some of our last moments with William and got in touch with a couple of our pastors from Covenant who were so kind to come baptize William. It was really special. He didn't like the water on his head much and made a face when the water hit his face for the third time.
As part of this, we both got to spend time actually having skin to skin contact with William. Which was absolutely incredible. I don't even know how to describe it, but for the few hours I was holding him, the world just felt a lot more whole than it's felt in a while, and it was one of the best things I've had the privilege to experience.
Jeff got to hold him, too and it was equally special to watch him hold William. We had a photographer come in who took some candid family photos of us, someone who volunteers their time to come and take pictures of people in our situation.
The miraculous thing is that William started oxygenating better when we were holding him, than he had for the past few days. Which bought him more time. And a little more time.
All of Jeff's family was able to come visit and eventually my parents also arrived just after midnight after driving all afternoon and evening. It's been wonderful having everyone here.
So, William is doing much better, and we are so blessed that he is still with us right now. The docs are frankly surprised he made it through the night. Now, we're basically playing it hour by hour, day by day to see how things go. He's not on quite as much support as he was yesterday, but there's not much higher we can go. He's still on 100% oxygen, which is what he needs right now to recover from his longer period of bad saturation, but we really need to be able to dial him down to prevent some of the serious side effects prolonged oxygen exposure can cause.
So, we are VERY aware of William's precarious situation right now. We are overjoyed he is with us today and Grandma Pierce (or whatever her new title is) got to watch a feeding and diaper change!
William's platinum blonde peach fuzz hair is still growing, his eyebrows came in, and we can see some eye lashes, too.
He was starting to crack open his eyes yesterday on our chests, too. It's like watching an egg hatch!
Through the night, he was saturating very very well and he has continued generally on that path so far. He seems pretty tuckered out today, or at least much more peaceful and sleepy. We're all exhausted as well.

We need the prayers to continue. Prayers that William keeps on fighting, that he continues to have a good heartbeat. That he saturates well with oxygen and that his blood pressure stays where it needs to, to support him. That William maybe has a poop! That he doesn't have an infection from the new arterial line that gave us trouble on Thursday.
That his blood sugar comes down a little again.
That mommy and daddy know how to take care of themselves and rest when they need to.
Today, William is ten days old.

Pray for Oxygen!

An update from Melissa today:

Yesterday the doctors were able to successfully replace the tube that went into William's stomach (the arterial line), and it's working! Praise God!!!! They received a blood gas test back, oxygen levels are still low, but carbon dioxide levels were good.

This morning: William is being switched from the other breathing machine, we need him to get better oxygen saturation so we can bring him down from the 100% oxygen. Pray he takes to the new machine and pray they can bring the oxygen down. Pray his body receives the oxygen it needs to heal and survive.

An Update from Jeff

Hi, this is Becky again. Jeff just called me and here's an update he wanted me to post for him:

• Yesterday the doctors did a brain scan/ultrasound on William and discovered some dark spots on the left side of his brain which might indicate that some brain cells have died. This could mean he may end of having cerebral palsy and unable to move his lower body. Although, he is moving his lower body quite a bit and ultrasounds aren't always correct, so this is unsure.
• There is a really important big tube that goes into William's belly button and is used for testing his blood, blood pressure, and a whole host of other things that measures how his body is doing. Right now the tube isn't working. They think there might be a blood clot in there. If the doctors take the tube out and replace it with a new one, the clot could dislodge and cause damage to other parts of his body, or he could get an infection. The other option is to put the tube in his foot, but that would cause his foot to swell very large. They are going to try and replace the tube in his stomach, but there's definitely risks.
• William is on 100% oxygen right now and has had his 3rd dose of steroids to help his lungs. The longer he is on oxygen, the more damage it can cause his lungs, which are already small and may be underdeveloped. The steroids should reduce inflammation but this also causes his immune system to be weakened. The goal is to try to use the steroids so his lungs can heal and grow, and have an easier to accept oxygen so his blood gets the oxygen he needs to all parts of his body.
• William is getting a little bit of breastmilk every 6 hours but it's just to prepare him for receiving more food later. If they give him too much, his blood will circulate more in his digestive system rather than in the areas where he needs the most healing. 

• The doctors are very worried about William but it's too soon to tell what will happen. As noted above, William has a lot of risks, so keep praying. He's managed to survive these risks before so we hope that continues!

Here's some good things that happened:

• Jeff and Melissa were able to see William without the top hatch of the incubator
• They could hear his little voice as the ventilator air flowed past his vocal chords (which is normal). Jeff said it was like a little squeaky breath, in and out, and very cute.
• William was holding Jeff's finger very tightly today!
• William is still moving around a lot, which is good.
• He has blondish-red eyebrows like Jeff. :)

Please keep praying for William:

• The tube can be replaced without any issues
• His lungs would grow and heal quickly
• The spots on his brain will turn out to be nothing
• That he won't have any damage to the rest of his body
• That he will not get any infections

Power of Prayer

For those of you who are prayer warriors, the next few days may be very crucial.
William did start out strong, but because he's so little, he's gotten pretty tired by now and needs a lot more extra support from his breathing machines and drugs. This morning, he had a pretty rough day apparently.
We've been having to keep upping his blood pressure medicine, and today we had to start him on a more powerful steroid to replace the hydrocortisone to try and reduce the inflammation in his lungs. This is to help him reach the oxygen saturation in his blood that he needs to survive. There's a host of other risks with this drug, and he's getting the minimal amount for the shortest possible period where it may be effective. So while that is scary, it's also somewhat a matter of survival or not.
So far he seems to be doing well with it. We'll probably have a better idea tomorrow, too. Since he's been on pure oxygen for over a day, it's important that we wean him off of it, because that much oxygen can be toxic, so hopefully we'll be able to start weaning him off of it slowly tonight.

Facing that William is in more of a critical condition today than he was a few days ago is really hard. I don't really know what other details to go into just yet, because we don't really know for sure how the drug may otherwise affect his body. It could slow his growth. It could cause brain damage. But this is also what he needs to survive right now. And all I can hope is that his feedings can increase and that he will get what he needs to overcome this rough patch. Pray, pray, pray. Cry out.
I was reminded today that God's power lives within each of us, so I'd like to think that harnessing that power could accomplish another miracle.

Happy 1 Week!

We have gotten to know William for a week now.
It's been a blessing to touch his head.
It's been a blessing to have him squeeze our finger in his palm.
It's been a blessing to smell him.
It's been a blessing to get to be part of his feedings.
It's been a blessing to meet and see this remarkable human being who is part Jeff and part Melissa.
William is SO CUTE.

Mommy's Recovery So Far

So surprisingly, my recovery from delivering William has progressed smoothly. I've felt better and stronger than I have during most of the pregnancy and I don't really seem to be having many labor related aches and pains. 

I do notice the effects of prolonged bed rest test, though. My lower back is killing me and super weak, I'm having to be very conscious of trying to correct my upper body posture and I can use my abs again. 

My sleep schedule is pretty crazy since I'm trying to establish a good milk supply for later on (and that's going pretty well, considering I'm a Preemie mom). 

Most days I still want to save my energy to make the walk from the parking garage to the ISCU (on opposite sides of the hospital...) and to be able to stand for longer amounts of time so I can touch William. So when I'm at home, I'm trying to make myself chill, even though I have all these projects I want to get my hands on and I really enjoy having the energy to take care of myself more. Hurray for getting my own beverages (except this morning... I was already hooked up when I realized I was thirsty and asked Jeff to supply me, lol)!!

When I go back to my next postpartum check up, I will be treated as low risk, for which I'm grateful.

The Race Begins

We've seen some changes over the last day and a half. Some good, some expected, some worrying me and Jeff. 

Let's start with the good:

William responded well to my milk, so he now gets to eat every six hours. When I held the syringe today, he squirmed a little when he started feeling it trickle down into his belly ❤

William was a lot calmer today. Probably because they went up on his pain medication a little yesterday, but also because he's on a different respiratory machine today. 

The nurses replaced one of the IVs that went into his belly with an IV that is in his leg and can be much more permanent, possibly even stay there for a month.

We taped a picture of Jeff and me to the incubator, William is looking right at it. If he opens his eyes, he'll see us, although he probably won't be able to see much.

The expected and more complicated news that puts is on edge:

He got switched to a different breathing machine. That in and of itself isn't bad, but the reasons for that happening (the blood pressure difference between his lungs and the rest of his body, and the heart bypassing blood flow to the lungs sometimes, leading to undersaturation of oxygen in the rest of his body). So today, with the ventilator, he's also on another drug/gas that is being mixed with his air to relax the blood pressure in his lungs. At the same time, he's been getting dopamine again, and they've increased the dose somewhat throughout the day. 

In addition, he was testing high for carbon dioxide in his blood, so they've had to turn up the ventilator to force William to take more breaths per minute. Over the course of the day, they've gradually had to keep increasing the breathing rate. He's getting close to maxing out the speed of the machine, so he may need to go back to the oscillator sometimes tonight. His latest blood test tonight looked good enough for them to leave the settings as is for now.

What we really need prayer for:

It seems that we have now reached a point where it's apparent that William's lungs have exhausted themselves and he needs more help. Now, we're in a bit of a race. Can his body grow and heal his lungs faster than they are being damaged by the life support he's receiving? We hope that the increased frequency of feeding with breast milk will give him what he needs to heal and beat the clock. It's also good that he got a break from the oscillator I guess, to change the stress he's been undergoing. So, pray that William's lungs will grow and heal faster than they are being hurt.  

Lungs -new info-

So, William's Doctor says he's generally doing pretty well, but this afternoon they decided they needed to go back up on the hydrocortisone to stabilize his blood pressure. William has been shunting (at least that's what the nurse called it, I think it's spelled correctly?). His blood pressure in his lungs is too high from the stress they're under, and since he's little enough that he has an extra hole in his heart, the blood can somehow bypass the lungs and get into his system, so that some of his blood is not as highly saturated with oxygen. So they poked and prodded a little to make sure that resuming the original hydrocortisone dose is the best course of action. We are expecting that since his lungs have been taking such a beating, that they are basically getting exhausted and that he might be needing stronger support from the oxygen machines. There's still different drugs and settings they can use to change things up. Regardless, he will still be getting milk everyday from now on, and that is probably still the best thing for him to get, even to help with the lungs. GROW GROW GROW.
After they repositioned the breathing tube today, he was much much happier. Not squirming and seemed more stable. But we needed to be more hands off with him today, which is hard. He's getting enough stimulation already, and it's more important for him to chill and let the machines help him. We need to be prepared for a lot of ups and downs with his lungs for a while.

And a few hours later, in the words of Jeff who called in for an update on his way home from work:

Ok... so I don't know how to do updates on the blog, been too busy.  But the latest is that:
  He wasn't getting enough oxygen through his body with the oscillator, but he did better when they were "bagging" him by hand.  So they moved him to a normal ventilator, and so far he seems to like it better.  The doctor I spoke with thinks that's a good thing, because it means his lungs are more developed to handle the normal in and out breathing.  His blood pressure was too low, so they put him back on dopamine.  The air pressure from the ventilators is too high, so they are mixing the air with nitrous oxide to lower the air pressure.  The combination of low blood pressure and high air pressure going into his lungs causes his blood to reverse flow, due to an artery that's open in the heart in small babies (Melissa called it  a hole in the heart I think).  But it's not really a hole... just a vein that doesn't close until later in life.  It's supposed to be open when the baby is inside the mommy.  So, for now William is stable, but he is on more and different machines.

Feed Me!

Today, William received his first real food provided by mommy!
His blood numbers were stable enough where it was time. His blood sugar, which had been high, measured in a normal, his salt levels were better, he didnt need sterile water anymore, and has stayed off of insulin and dopamine. His hydrocortisone dose is being reduced as well.

The feeding was pretty special. Our nurse filled up a syringe with a ml of milk/colostrum and I held it above William's head. It just trickled right down the feeding tube going through his nose. When he got his first taste, he literally clapped his hands! He sort of half missed them, though. I've been watching him for almost an hour now after the feeding and he seems to be tolerating this new experience pretty well, according to his vitals.
He will "eat" three times daily for now, every eight hours. Gradually, it will become more frequent.
So proud of you, William Elliot.
And William's doctor was very optimistic today, as well.

Pictures from Aunt Becky

Hello - this is Aunt Becky (aunt to Annette and now baby William!). Here's a few photos I took the other day when I visited William in the hospital.

First Impressions

There are so many first experiences happening right now!
We like to have William hold our fingertip in his hand.
Melissa likes to put her hand on William's blond peach fuzz head, which is sprouting hair as fast as Jeff's face sprouts the beard.
William was exploring his ear yesterday. His ears don't have cartilage yet, so they are super flexible! He was pulling at his ear and it was super funny. What is this thing on the side of my head?!?
William waved his right arm up in the air like a conductor, trying to get an orchestra to follow his crescendo (more cowbell!). We saw him do that a couple of times.
William sucks on his respirator tube in his mouth. He knows what he should be doing right now, haha!
His eye lids are still fused shut, and they could stay closed for another week. He's been trying very hard to open his eyes. Every now and then he scrunches up his face like he's about to cry and it melts me every time.
William is getting all of his nurses to fall in love with him already! Thanks for the good genes, grandparents and great grandparents!
Today, he seems to have had his first poops (I don't mind not seeing those).
And Jeff's parents and us saw William make the "monkey toe"!

This evening we had some different firsts. It looked like he was dry crying, and in his body would move in a way that looked like he was dry heaving, and his mouth would open up slightly. Even though his vitals are all within a good and normal range for him, it looks like he is suffering somehow. We think it may have to do with the feeding tube that got moved from his mouth to his nose. Or with the eye mask that he's wearing to protect his eyes from the light to help his body process the bilirubin which makes him look jaundiced. This light also just makes him look really bad, it accentuates every little crease in his skin, and today his skin looks very dry.
His vitals have been consistent though. It seemed as though William started being an unhappy baby this evening when we arrived and Jeff was firmly touching him, but William seemed dissatisfied. We think he may have been hoping for me. So when I was done pumping it was my turn and I think he did calm down some, but he definitely calmed down more after I gave him sort of a body hug with my hands. I laid my fingers over his arms and we moved the bendie hugging his bady tighter around him. We did decide to help him a little with a drug to help him settle down, that seems to have worked before. He just has to learn that these changes are ok, even though he doesn't like them...

Otherwise, he has continued to stay off of insulin and dopamine, his vitals have been good and we're hoping we might be able to start him on colostrum tomorrow. Jeff may try to attend the morning briefing (I will, too, if it doesn't conflict with my doctor's appointment) to get a clear update and hear the plan for the day.

Hello Family and Friends!

Hi Everyone! This blog is to keep you updated on how William is doing, because it is getting too difficult and overwhelming to update everyone individually, like we wish we could. So, please check here for updates on his status instead of contacting us and we will do our best to let you know how he is doing. Thank you so much for your prayers and good thoughts!