Paci pro!

Will slept through the night. Unfortunately, mommy did not. He was whimpering and crying in his sleep. The noises are music to my ears, but of course I don't want him to be uncomfortable. Early in the morning it became clear we were dealing with some major gas, and it actually felt good to have a "normal baby problem" and a "normal mommy night." He is feeling much better now.

Last night, we were really working on the pacifier. Our nurse said not to be surprised if he went home in a few weeks, still unable to suck. He might need OT or other intervention to help him out. In this past week I've learned that you can't tell Will what he can and can't do! By this morning he was sucking on his paci like an old pro. He can handle any challenge. Even conquering life with half a heart. Will is
my little champion!

Love

"I have found the paradox, that if you love until it hurts, there can be no more hurt... Only more love."

 -Mother Teresa

Extubation

Stink face!

Will's extubation went great.  It was hard for me to watch, but I needed to be there for him and I'm glad I was.  He was clearly aggitated as they were doing it.  I can't blame him: they were pulling a tube out of his throat.  At one point the doctor was saying, "you need to stay awake, Will!" and he gave her the worst stink face ever!  He has been breathing on his own for almost an hour now, and all of his numbers have been perfect the whole time.  He is glad to have that thing out!  I keep trying to give him a paci (it's important to get him sucking again), but he doesn't want it!  He looks at me like, "No, mom!  My mouth is finally empty and I want to keep it that way!" 

Extubation

    As soon as they've seen a good trend after his extubation, they'll remove his PICC line.  He'll love that, too, because he is dying to move his left arm.  Maybe he is a lefty like Mom?

I'm free!!

Hi Will, we're your parents!  What?  Is this not what you expected?

Due Date

Today is my original due date.  It is really incredible how far we have come already.  Will is still showing us his strength and determination every day.  Words really cannot express how proud we are of our son.

They are starting to wean William off of the vent today.  They have turned down his mechanical breaths from 20 to 16, and he is triggering a lot on his own.  He is breathing around 20-22 breaths a minute, which means about 4-6 of them are his.  I'm very optimistic that he will be extubated by tomorrow, because he has been a strong breather from the minute he was born.

His foley was taken out, and they've stopped his sedatives.  They did decide to leave his PICC line in another day.  We are really on the road to recovery.  The nurses and doctors have said to expect to take one step forward, two steps back... we keep stepping forward, and I know that it is Will's spirit and fight propelling us.  So, I believe we are the exception to that rule!   All of his numbers are great.  His sats are perfect, his heartrate is down (which makes me feel like he is much more relaxed and comfortable), and his blood pressure is good.  Go, William, go! 

Cuddly boy

Love our baby boy!

Mama knows best

After the chest closure, we've been anxiously awaiting the moment when Will wakes up.  We weren't quite sure when it would be.  We were discussing plans to shower/sleep/eat for the evening, and I was just afraid to leave for long because I did not want to miss him opening his eyes.

Casually, I mentioned that I thought the light was too bright, and once it was darker out he would be more comfortable to wake up.  Megan said I could turn the lights off.  I turned them off and turned around... My wonderful baby boy responded by opening his beautiful eyes and looking right at me!  It was the most amazing experience! 

He woke up pretty well, moved his arms and legs around a bit, but has settled back down.  It's obvious he is still very sedated, but he spent a lot of time looking back and forth at Mom and Dad before he started drifting off.

I was very excited to share this story, because it was a very special mom moment for me.

Will is still doing fantastic and still blowing everyone away with his strength.

My little blackbird.

Back to sleep

You may be strong, Will, but Dad still wins at thumb wars for now!

Chest is closed!

We were starting to get worried he would still be too swollen, but once again William showed us that he can handle it. They closed his chest around 11:00 this morning, and he is doing FABULOUS. All of his numbers are great and we are hoping he will start waking up soon! Meanwhile, we have been taking a lot of pictures!

Will and his new "zipper"

Mommy finally gets to change a diaper!

So happy to be one step closer!

Will and Grandpa

Hopeful

Will made it through a pretty uneventful night.  They've got almost all of his numbers right where they want them.  His heart rate has gone down, which is comforting to me because it just makes it seem like he is more relaxed.  His sats are in the lower normal range, and his blood pressure is fine.  His glucose levels finally came down to where they want them.

The dialysis is working better now, but we are still +10, when we need to be -200.  I'm still hopeful he can make it there by rounds this morning so they will decide to close his chest.  If not, we have to wait another day.

Last night Will opened his eyes a little.  It was kind of scary, but it was immediately obvious he wasn't in pain and had no clue what was going on.  His little feet were moving slightly, which is a good sign for neural functioning. 

This morning, he was still.  I went over to say good morning and sing to him, and his feet started moving, then he closed his sweet little fingers around mine.  Reflex or not, it was a very special moment for me.

Thank you all for reading Will's blog and following his story.  I will post again tonight, and hopefully with news of a successful chest closure.

Amazing

Put little socks on him, and his bed has guitar sheets now!

Post Op Day 1

Poor Will has had the hiccups all day. He can't feel anything, but they make me cringe because of the idea of hiccuping with an open chest!

Today hasn't been stellar, but not terrible. He is being put on dialysis now, which is expected. Of course, with how well he was doing we kept thinking he could get by without, but we can only ask so much of him. He is very puffy and the dialysis will help the swelling, because they are still aiming to close his chest tomorrow. If the swelling doesn't go down enough, they'll have to put it off another day. I am very anxious to get his chest closed for many reasons: it will greatly decrease the likelihood of infection, and once it is closed they can start letting him wake up. I am so excited to get to see his beautiful eyes again. This will be such a big step in his recovery from the Norwood.

His sats were just slightly low for a while, but they are better now. His heart rate is higher, but not bad. They gave him some blood and expect it to go down a little more. His cardiac output is great.

I felt like I got slapped in the face at rounds today. The doctor was talking about how Will was doing so well, all his numbers look good, and they are all very pleased. Then he added, "of course he is still critically ill, but he is doing well for being in this situation." He didn't say it in a rude way, it's just a matter of fact. This shook me up a lot, because everything is going so well... I suppose I just forgot that he is actually critically ill, even if he is doing well.  It makes me thankful once again to be in such a great place.  There is no way he would be doing this well if it weren't for his wonderful medical team. 

On that note I must add that I have a newfound respect and admiration for nurses.  The nurses here in the CICU work 12 hour shifts, and are running non-stop to keep on top of Will's care.  Despite what I would consider a VERY high stress level, they manage to all keep a friendly, kind and patient attitude throughout their shift.  So to all of the nurses out there, I say THANK YOU!

Will's puffy little feet.

Ready to have my baby boy back!

Super baby!

Good morning mighty heart hero!

William Jude is truly a super baby!  As I mentioned in the last post, Will's medical team was expecting a rough night, but he showed them!!  He had a very brief dip in blood pressure and sats but they got it under control immediately, and there have been no other issues!  The doctors and nurses are all so impressed!  Right now they are planning on closing his chest tomorrow after rounds in the morning.  We are so proud of our little man! 

Norwood Update 4

Sigh of relief.  Will is back in his room and we are with him now.  The surgery was a complete success, and Dr. Manning was very pleased.  The reconstruction went just as planned, and he did great coming off of bypass.  It was a lot harder to see him afterwards than we expected, but it is comforting to know that he is sleeping through this.  He feels nothing, and will remember nothing.  I am a little jealous of that!  All of his numbers are perfect right now.  The nurse warned us that all babies in his situation run into a rough patch about 8 hours out from surgery.  She said she can guarantee it will happen and they are prepared and ready to adjust his medicines to control it.  All of the nurses here are so nice, we have loved them all.  He has a nurse all to himself for the next few days.  It is good to know that he is under 24/7, 1 on 1 care from them.  They are all extremely attentive, and patient with the parents who have a lot of questions!  We feel so happy about our decision to bring Will here to Cinci Children's.  Even the doctors all have wonderfully kind bedside manner and I am just so impressed with our experience so far.

His nurse explained all of the medicines, lines, tubes, etc... surprisingly we understood and remembered them!  I think we are catching on to this.  It is amazing to see the way all these different pieces come together in his treatment.  There is so much to learn, it seems hard to imagine how someone put the puzzle together to be able to treat a condition like HLHS.  How incredible it is that these people are able to overcome an otherwise fatal condition.  And Jared and I will never be able to show enough appreciation for all of the nurses and doctors here who keep it all together.

They just did rounds, and the doctor said William is doing as expected, which is good.  We know tonight will be rough, but at least we are prepared for that.  We are hoping for an uneventful day tomorrow.

Thank you, thank you, thank you for all of your prayers and positive thoughts.  They really helped bring not only William, but all of us through this difficult day.  It was so comforting to know how many people were thinking about him all day long.

Will and his "stuff"

So handsome... what tubes?  He shines right through them.

Norwood Update 3

Will is off of bypass now and doing well.  He is still in the operating room getting a few sutures fixed up, but overall he is doing great.

Norwood Update 2

The reconstruction is done!  The nurse said it was successful and they are happy with the results.  Right now they are taking him off of bypass and letting him warm up to make sure he is clotting properly.  Keep the prayers coming!

Norwood Update 1

We kissed Will goodbye at 7:45 this morning as he went into the operating room.

The nurse just came in with an update: Will was successfully put on bypass, his chest is open and the reconstruction has begun.  He is doing very well.

They are doing arch reconstruction now and said they will try to update us once that is done.

Surgery

Tomorrow (5-26) Will is officially scheduled for his stage 1 (Norwood) procedure at 7:30 AM.  Please pray continually through the day for William, Dr. Manning, and the rest of the team with whom we are trusting our perfect little baby.  The surgery will take at least 6 hours, possibly more.  Of course I will be keeping all of Will's friends updated on here! 

Jared and I didn't know he had been breathing on his own all morning.  He is a champ, but they are trying to slow it so that nothing changes between now and tomorrow morning.  He woke up for just a little bit as they were getting ready to re-sedate him.  Love his beautiful eyes.  Love everything about him!!

Hi guys!

Footsie kiss

Daddy changing a diaper!

Cozy baby

As promised, here are the pictures of William all snuggled up.

4:00 AM update!



Father and son moment

Will stabilized quickly and very well. He is intubated (a machine is breathing for him, so that his breathing is very controlled), and sedated. At first he was flat on his bed, but then our nurse got him all set up on a really soft pillow. I'd like my bed to be as soft as that pillow. All the tubes might look a little scary, but I think he is comfortable. Just a half hour ago, I wrapped his legs in a blanket and put mittens on him, so he is even more cozy. I will take a picture once the lights are back on.

I've slept about 3-4 hours since Monday night, but somehow I managed to stay up until rounds. The lactate levels in Will's blood went from a 6, to a 1.8. That level should be under a 2, so obviously their plan is working like a charm. We are most likely good to go on Will's stage 1 (Norwood) procedure this weekend. It is earlier than I expected, but I am glad that it is all the sooner he can recover and come home with us! I told the doctor we were warned that this could happen (too much blood to the lungs, causing the high lactate levels), but it was still just a little shocking. He said it happens to about 1 in 10 babies, and I said well then I'm not surprised after all... Of course Will is the special one!

Can never thank you all enough for your prayers, they are obviously working. Also, thank you for reading and following this blog. I am finding it such a comfort to be able to write about everything I am hearing. It really helps me to digest all of the information, and keep it straight in my head, especially at 4 in the morning when I have no one to talk to!!  Please continue to pray, especially this weekend for his Norwood procedure.

Comfy pillow :)

Picture with Grandma and Grandpa!

Little pilot.

So Will is flying the plane here today.
We were expecting/planning a peaceful weekend, but he is ready to get this show on the road.  They are seeing too much acidity in his blood.  There is too much blood flowing to his lungs right now and not enough to his body.  This was something they had told us could happen, so it didn't come as a complete surprise.
The plan is to intubate him.  He is breathing fine on his own, but they want his breathing to be controlled.  They will give him muscle relaxers and paralyze him and this is how they would like to stabilize him.
If he is stabilized (by midnight - 3 AM) they will do his Stage 1 Procedure (the Norwood) on Saturday and recovery from there should be just the same as if they waited.
If they are unable to stabilize him this way, tomorrow they will do a surgery to place a P.A. band to restrict blood flow to his lungs tomorrow (Friday) and then plan to do the Norwood on Tuesday or Wednesday of next week.

The doctor I spoke with expects him to be stabilized well tonight, but again, Will is in charge here.  Thanks to everyone for your prayers and support.  Let's get our little guy through the weekend.  He is such a tough little guy and he is ready to get this surgery over with!  I have to admit, as overwhelming as this is, I am, too.  Jared is with him now and I am being discharged at eight tonight.  We still get to stay with him until his surgery.



Yum, finger!

Bring it on!

My lil punkin at Children's

Will is here!!

William Jude is here!
He is 6 pounds, 15 ounces and absolutely wonderful.  Breathing on his own, totally stable and such a fighter!  They had to restrain his arms to do his IVs because he was so wild!  He is beautiful and pink and his oxygen sats are exactly where they wanted them. 
Best part for me: I got to hold him immediately after birth, and again after he was cleaned up.  Then they took him to the NICU (his daddy went with him) and brought him to see me again before they took him to Children's.  They just left about a half an hour ago.  Now I am just waiting for my legs to work because I get to go to Children's for six hours tonight!

William Jude is coming next week.

  A week from tomorrow Jared and I will be checking in at Good Samaritan to get prepped for my induction the next day.  We are so excited to meet him!!  William will be born on May 23rd and will be transported to the Cardiac ICU at Children's Hospital shortly after. 
  Thank you all for your prayers and positive thoughts.  We are as prepared as we can be for what is to come, but I know need to be prepared for the unexpected.  Our team at Children's is ready and confident.  We trust them and know that Will is going to receive the best care that he can.  That being said, there is a lot we won't know until he arrives there.  Once he is at Children's they will do an Echo, and begin planning for his surgery.  We will not have a date for his surgery until after he is born.
   I am hoping that things are uneventful enough that I will have plenty of time for detailed updates.  At the very least, we will post pictures as soon as possible, as well as his first surgery date (once we have it.) 
   We are thankful for all of those who are planning on visiting while we are at Children's.  I will also be sure to post details about when we will start accepting visitors, as well as the rules Children's has for the CICU.
  I would like to ask for all of Will's prayer warriors to please add a prayer for my dear friend Lacie, her husband Matt and their baby boy.  He is due May 30th (a day after Will's original due date) and also has HLHS.   Lacie has been such a comfort and good friend through this journey and I would love to have you all lift her and her family up as well when you pray for William.
  Please pray for these boys to come into this world kicking and screaming.  Pray that they are big.  Pray that they are stable.  Pray that their echos show no surprises.  Pray for no additional complications.  Pray for their comfort.  Pray for their doctors, and their surgeons.  Pray for the nurses.  Most importantly, please pray for two happy and strong little boys who will fly through surgery and recovery and come home safe and sound.  Thank you.