First Surgery... Six Years Later

Six years ago today, at 6:33 AM, I watched helplessly as my 7-day-old son was wheeled down a long hallway inside the Medical University of South Carolina, towards the Operating Room, to undergo his first life-saving open-heart surgery, the Norwood Operation. This was the last picture I took of him before he was wheeled away to the OR:

It would be a grueling, arduous 8 hours and 23 minutes before we received word that the surgery was complete. I can recall those moments in the PCICU waiting room in vivid detail, as if it were just yesterday that I helplessly awaited each and every update from the OR, informing me of whether or not my newborn baby was handling this open-heart operation as we had hoped and prayed. I remember who was there with us as we waited. I remember the sights and sounds of the waiting room. I remember the smell of the antibacterial hand soap in the bathrooms. I remember walking into the PCICU throughout the day to grab the key to the pumping room to develop a supply of milk to nourish my baby via ng-tube, since it was uncertain when or if he would be able to take a bottle. I remember walking across the street for lunch. I remember the relationships with other families in similar situations with their children that we established. It all seems so surreal -- like it was yesterday, but also a lifetime ago.

This is what I shared on my blog on November 2, 2009 after I saw Chase for the very first time following surgery:

Hubs and I got to see Chase for about 5 minutes once he was stable in the PCICU following his surgery. They had a blanket over him so I didn't see his open chest or any of the chest tubes, lines, etc. that were added during the surgery. He looked very peaceful and not as swollen as I was expecting, although we were told he would get more swollen over the next day or two. Luckily we were very pleased to hear he was already peeing out some of the excess fluid, which was a big blessing to know his renal system was functioning well so soon after surgery. We were also told they had been able to reduce some of the medications he was on as well! This is all very encouraging!!! 

I will admit I'm fearful of the next 24 to 48 hours as Chase's body responds to the major changes to his heart and circulatory system. I'm scared we're going to get a call at 2AM telling us something is terribly bad with him. But I know that's just my human side trying to prepare for the worst-case scenario, when truly I should be focusing on the miracle of what God did in Chase's life today and the peace He's given me for our future and our little boy! This is hard but I know it's doable with God in control of our lives. 

This is the first photo I took of Chase after he returned from the OR. There were so many lines, wires, medications... it was unbelievable to see my newborn baby like this. The nurse had placed a blanket over his chest so I wouldn't be able to see his beating heart, as his chest was left open following the surgery to account for swelling (it would be 3 days before the surgeon would close his chest).

Today, as I think of the past 6 years and the path God has brought us through, I cannot help but thank Him and praise Him for his love, mercy, and healing touch on my sweet son! Just last week, we had the honor and privilege of celebrating six years with this incredible boy! He is such an amazing, compassionate, and loving little guy and the biggest blessing in my life! ♥

Norwoodiversary

One year ago today, at 6:33 AM on Monday, November 2, 2009, we sent our sweet 7 day old son off for his first open-heart surgery. We waited patiently through 7 pager updates, informing us of how Chase was performing during his first surgery, until 2:55 PM when his surgery was complete and we were able to speak with the surgeon. We were beyond thankful that the surgery was a success and Dr. Hsia was able to complete everything he needed to. We know we were covered in prayer throughout that day, as well as the critical 24-48 hours following his surgery. We are so grateful to have friends and family who were there to support us through the hardest day of our lives.
When we were finally able to see our boy one year ago today, this is what we saw:

Fast-forward one difficult year later. I'm writing this post while LO works on her third piece of cinnamon toast and watches the Mickey Mouse Club. Chase is awake in his crib, and my heart just melts at the beautiful smile I am so blessed to see every morning when I greet my sweet boy:

I'm sure some of you may tire of hearing this, but God has been SO GOOD to us over the past year. We are so blessed to not only have Chase in our lives, but for him to be doing so well living with his special heart? It simply amazes me daily. I cannot get over how blessed we have been, especially as other families in the heart community have struggled through difficulty after difficulty and unfortunately, many of whom have suffered the greatest loss imaginable. I will continue to praise and thank God each and every day for the favor He has shown my family, and will forever be grateful to see this sweet face each morning.

Thank You, Lord, for Your grace and indescribable love for us!

Movin' on Up!

This is my first official blog post from 7C! That's right!! We made it! Chase has been an absolute super-star and has exceeded our expectations a hundred-fold with his recovery. Tomorrow he will be THREE WEEKS OLD!!! And tomorrow also marks TWO WEEKS since his Norwood surgery. I still can't believe we're upstairs already. It should be interesting to see how it will be living here at the hospital with Chase while hubs is home with LO. In fact, tonight will be the very first night hubs and I have spent apart in the almost 4 years since we got married (Nov. 25th)! What a huge and significant day today is! Of course it's also my very first night with my sweet baby boy and I couldn't be more excited about plans that DON'T involve a good night's sleep! LOL!

Here's our first picture of our little champion rockin' out on 7C. More to come later!

One Week Post-Op

Dr. Hsia is in the process of removing Chase's RA line at this very moment -- the FINAL STEP before we're given the "go ahead" to hold our baby boy!!! I am beyond ecstatic! Thank you, Lord! I still can't believe one week ago today he was in surgery!!!

Chase has also been doing a great job of handling his feeds. They started him on 4 ccs per hour Saturday night and he's already up to 16 ccs per hour. He's handled the feeds so well -his stomach is soft, he's had a few stools, is still peeing well and is managing the residual in his tummy well. He is moving his feeds a little slow right now but that is to be expected.

They also want him to have a consult with an ENT since he still has a raspy cry. They just want to be sure there isn't any damage. Again, this is relatively normal.

One concern we do have is that Chase's white blood cell count was a bit high this morning. They're doing some additional tests and cultures to hopefully rule out any infections. Please pray these come back normal!

So that's where we are today, just one short week after surgery. God is so good and we will coninue to give Him all of the praise and glory for the miracle He's performing in Chase's life!

Posted from my iPhone

Our Little Miracle

This post is long overdue. It's turned into a long post, too, by the way, but it's really long overdue. I've been completely humbled and overwhelmed by the miracle God has provided in our lives by bringing Chase into the world and keeping His hands upon him through his surgery and recovery. I truly don't think people understand what we were up against nor what our road could have looked like. Hypoplastic Left Heart Syndrome (HLHS) is a serious, complex, fatal heart defect. Without his open-heart surgery last Monday, Chase would not have survived for more than a few hours after his birth. This fact alone is both amazing and astonishing. I am so grateful we live in a time when imminent death is not the only option for these sweet babies with HLHS. I praise God for surgeons who are capable to operate on a tiny heart -- the size of a newborn's fist -- and successfully give them a second chance at life!

So we went into this journey hoping for the best, but expecting the worst. It's just how hubs and I prepared ourselves to handle the roller coaster we were getting ready to board. Our trust and faith has always been in God and we've had an unreal peace throughout this journey that only comes from above. But honestly, we went into this expecting to be in Charleston through the end of the year, possibly well into January. That was our expectation. That was what we prepared for. That was what we planned for.

We expected we would be in the PCICU following Chase's surgery for at least 4 to 6 weeks. It was a slightly conservative estimate that we felt prepared us for the long-haul. After 4 to 6 weeks, we estimated we would step down to 7C, the Pediatric floor where we would completely care for Chase around the clock, and again assumed we'd be there for 2 to 3 weeks. We always knew there was a chance that our time estimates would need to increase should Chase not respond well to his surgery and recovery period. The very idea of it taking any less time than our estimates never once crossed our minds. We knew very well that God was and is in control and whatever He has planned would be fine with us. But we were still expecting the worst and hoping/praying for the best.

So maybe now you can imagine why we are completely astonished that less than ONE WEEK after Chase's open-heart surgery, we are already discussing plans to step down to 7C. Keep in mind, we guessed we'd be in the PCICU for 4 to 6 weeks!!! It's been less than ONE WEEK and already Chase has made such significant progress that moving to 7C within the next 7 to 10 days is not out of the question!!! Our remaining hurdle is essentially getting Chase to eat, digest his food and keep it down. Seriously. Feeding is the last big hurdle we have to get over. We are already looking at our LAST big hurdle. Again, less than one week following Chase's surgery!

This is truly a miracle. An answer to prayer before our very eyes. Evidence that God is with us and in control of our situation. He hasn't left us alone. Quite the opposite! He's proven to us over and over again over these past few days that He loves us, He loves our precious son, and He has a plan greater than we ever dreamed or imagined! Praise His name!!!

Let's take a closer look...

mir·a·cle
noun

1: an extraordinary event manifesting divine intervention in human affairs
2: an extremely outstanding or unusual event, thing, or accomplishment
3: a divinely natural phenomenon experienced humanly as the fulfillment of spiritual law

I think Chase is the epitome of all three of these definitions. If you knew anything about HLHS, surgery, recovery, etc., you would know that we have exceeded the expectations of everyone -- hubs and I, the doctors and nurses, and even the surgeons have been impressed by Chase's progress and recovery. Let's take a closer look at where we were 6 days ago and where we are today:

Monday, November 2nd: Immediately Following Norwood Surgery...

• Cerebral Oximeter - This huge sticker thingy took up his entire forehead and was used to monitor oxygen levels in the blood in his brain.
• Ng Tube - This tube went into his nostril and into his stomach and was used for feeds and meds.
• Endotracheal Tube - This tube went in his mouth and into his trachea and was used to assist with breathing.
• PICC Line - This IV was located in his left arm and was threaded through his veins and went directly into his heart through. It was used for meds.
• PICC Line - This IV was located in his right arm and was used as an additional access point should they need it.
• RA Line - This line went directly into his right atrium and was used to monitor his heart pressure and also to provide him with meds.
  
• Pacing Wires - These wires went directly into his heart and were in place in the event of an emergency.
  
• Right Chest Tube - This tube was used to collect the drainage around his heart.
  
• Left Chest Tube - This tube was used to collect the drainage around his heart.
  
• Somatic Oximeter - This huge sticker thingy was like the Cerebral Oximeter on his forehead, only it was located on his lower back to monitor the oxygen levels in his kidneys.
  
• UAC - This Umbilical Arterial Catheter was put into the artery of his umbilical cord stump and was used to draw blood samples and blood gases in order to verify the amount of oxygen and other gases in his blood.
  
• UVC - This Umbilical Venous Catheter was put into the vein of his umbilical cord stump and was used to monitor his blood pressure and to provide him with meds and nutrition.
  
• Foley Catheter - This catheter was used to monitor his urine output.
  
• Rectal Temperature Probe - This probe was used to monitor his temperature.
• I believe he was on somewhere between 12 - 15 medications.

Sunday, November 8th: 6 Days Post-Op...

• Ng Tube - This tube goes into his nostril and into his stomach and is being used for feeds. This tube will probably stay in place when we step down to 7C (the Pediatric floor) and depending on how he does with feeds, he may or may not still need the ng tube when we are discharged.
  
• PICC Line - This IV is located in his left arm, threaded through his veins and directly into his heart. It is being used for meds. This line will stay in place when we step down to 7C and will be removed before we are discharged.
  
• RA Line - This line goes directly into his right atrium and was used to monitor his heart pressure and also to provide him with meds. The current plan is to remove this line tomorrow (Monday).
  
• Pacing Wires - These wires go directly into his heart and are in place in the event of an emergency. These wires will stay in place when we step down to 7C and will be removed before we are discharged.
  
• I believe he's only on 2 or 3 medications.
  

I know this was a lengthy post and that I probably didn't describe all of the medical terminology completely accurately, but hopefully you can see through this mommy's perspective and understand what my baby boy has been through and truly what a miracle and blessing he already is in our lives. He's not even 2 weeks old and he's been through more than most of us have been through in our lifetime. His journey isn't complete by any means... we have another surgery that will take place around 6 months old and another one around age 3. But I cannot tell you how encouraged I am by his amazing progress, and how humbled I am that my Lord and Savior would use my son to demonstrate to me in a way I most definitely can understand just how much He loves me and cares about me and my family. When I look at my precious baby, I can hear the words of my Father speaking to me:

"I know what I'm doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for."

Praise His name!!!

My Little Rock Star

Here's a glimpse of my little rock star after his chest closure. It's still incredible to me that he was opening his eyes already! I sure have missed those cute little peepers!


Posted from my iPhone

Chest Closure Complete!

My sweet boy's chest closure is complete! He did a great job and looks amazing!!! He even opened his eyes for a few seconds when he heard me talking to him! It was awesome! I wanted to post a pic of him with this post but I didn't get a chance to take one yet! I wanted to let everyone know the procedure is done and I promise I'll post pics of my little rock star soon!

Thanks to all for your continued prayers!!

Posted from my iPhone

Chest Closure in Progress

Dr. Bradley is in the process of closing Chase's chest right now. He's been at it for about an hour now, and we're anxiously waiting the call to go back and see him. We are grateful that Chase has been doing so well that he can have his chest closed. His numbers and color have been great! The first few hours after the chest closing are critical as his heart adjusts to having less room to do it's thing and as his body adjusts to the change. We are confident that God is watching over our sweet boy and guiding the hands of Dr. Bradley throughout this procedure. We look forward to seeing him very soon!

Our next hurdle after recovering from the chest closure is to get rid of the ventilator (breathing tube). After that, we'll focus on feeds. So far Chase has done great with his fluids -- he's been peeing a LOT (which is AWESOME!) and the drainage from his chest tubes have been decreasing significantly. We are so very blessed that Chase has done so well this week! It has been so amazing to me to get to see answers to prayer right before my very eyes! So many people have been praying for my boy since we first learned of his HLHS diagnosis at 20 weeks, and it is very evident that God has been honoring those prayers. Thanks be to Him for the miraculous work He is performing in our sweet little boy Chase!!!

Amazed!

Chase continues to amaze us with his progress and recovery. His nurse yesterday kept referring to him as a Rock Star! It was too cute! He's still doing so well and we are so very grateful to God for His hand at work in our son's life.

He had a great night last night. They were able to wean him off his Epinephrine, which is one of the things that must be done before they can close his chest. We originally thought that would happen this afternoon, but (1) Dr. Bradley already has two surgeries scheduled today and (2) Chase's chest is still relatively swollen, so it sounds like we'll be waiting until tomorrow to close his chest so he'll have an extra day for his chest swelling to go down. I'm looking forward to this happening but at the same time it's a bit scary because once his chest is closed, we're looking at another series of critical hours as his body adjusts to having less room for his heart to function. I imagine I'll be spending most of the day tomorrow at the hospital watching over my sweet boy. The good thing is the chest closure procedure is completed at the bedside in the PCICU so we don't have to worry about watching him be rolled down the hallway to the OR. But it's still a serious surgery because they'll need to paralyze him and give him lots of meds, as well as go back up on his ventilator settings (he's been weaning off of it slightly since his Norwood on Monday). We are trusting in God that Chase will continue to rock on and have a great recovery following his chest closure tomorrow.

On a totally unrelated note, my little big-foot has already outgrown his socks! I brought probably 20 pairs of size 0-3 month socks and they won't stay on his big ol' feet! It's hilarious! I keep trying to shimmy them back on his feet every hour or so but they keep sliding off! He definitely has his mommy's feet! So last night, hubs and I decided to get LO out of the house for a bit so we made a Target run. I checked out their baby sock options and found some adorable ones for my boy, size 0-12 months! He'll definitely continue to rock out with these little guys on his tootsies:

Check out the little sneakers!

 Love the little monkey and giraffe! Although I think it's hilarious to have a non-slip grip on tiny baby socks! LOL!

I had to get these ones that say "I Love Daddy" and "I Love Mommy."

Day 2 Update

Chase had a great night last night! Praise the Lord! We are so very blessed that he has handled this major surgery as well as he has. I know God is definitely in charge of things around here and He's working out His perfect will for Chase right before our eyes!

Yesterday hubs and I got to spend about 5 minutes with Chase after his surgery once he was stable in the PCICU. Then the nurses needed about 2 hours to continue to settle him and work out his numbers, so we went home to have dinner with LO, give her a bath and put her to bed. It was very hard not to come back to the hospital after shift change (around 8:30 PM) but I knew Chase would need his rest after such a big day and that I wouldn't be able to love on him at all anyway. He's in VERY good hands here in the PCICU. It worked out for everyone's benefit because hubs and I had been up for over 36 hours straight with only a 3 hour "nap" Sunday night.

So apparently this morning when the doctors rounded, Chase earned a gold star! They were thinking his report would take the longest since he just had his Norwood surgery yesterday and they assumed he'd be the sickest, but in fact, his report was the shortest of all of them! He had an amazing night, his numbers looked great and overall there wasn't any major concerns or issues with him. He was responding exactly the way a post-Norwood baby would -- even better in some ways! What a major blessing! He had started urinating yesterday after surgery, which apparently most babies don't do. He's continued to do so all day today so he hardly doesn't look swollen or puffy at all! I'm so amazed that he's been doing as well as he has! God has truly been at work here with us!

I cannot find the words to say Thank You to all of you who have been praying for my sweet little miracle. Friends, family and a TON of people we don't even know have lifted Chase to the Father in prayer and we are so very grateful! It's been VERY evident that God has been working in Chase's life and has been giving hubs and I the peace we need to get through this time. Please continue to pray over the next few days as Chase continues to recover from this major surgery. He's been doing so very well and we hope and pray this trend will continue.

Love and thanks to all of you! God bless!!

Post-Surgery Visit

Hubs and I got to see Chase for about 5 minutes once he was stable in the PCICU following his surgery. They had a blanket over him so I didn't see his open chest or any of the chest tubes, lines, etc. that were added during the surgery. He looked very peaceful and not as swollen as I was expecting, although we were told he would get more swollen over the next day or two. Luckily we were very pleased to hear he was already peeing out some of the excess fluid, which was a big blessing to know his renal system was functioning well so soon after surgery. We were also told they had been able to reduce some of the medications he was on as well! This is all very encouraging!!!

I will admit I'm fearful of the next 24 to 48 hours as Chase's body responds to the major changes to his heart and circulatory system. I'm scared we're going to get a call at 2AM telling us something is terribly bad with him. But I know that's just my human side trying to prepare for the worst-case scenario, when truly I should be focusing on the miracle of what God did in Chase's life today and the peace He's given me for our future and our little boy! This is hard but I know it's doable with God in control of our lives.

Here's a post-op pic of my little champ!!




Posted from my iPhone

2:55 PM - Surgery Complete!

We just met with Dr. Hsia and he told us Chase is out of surgery and is getting settled into the PCICU! The surgery was a success and he was able to accomplish everything he wanted to. Chase has been responding VERY well and we are very encouraged! Dr. Hsia did tell us the next 24-48 hours are the most critical as his heart and circulation react to the major changes that were made during the surgery. Please continue to keep Chase in your prayers as we anxiously await his recovery over these next few days/weeks. Truly we can't breathe a sigh of relief until after his second surgery, the Glenn, which won't take place until he's 4-6 months old. Please pray for God's peace to fill us during this time.

Thank you all so much for your continued prayers for our sweet baby boy!!!

2:02 PM - Update

They are closing up, bleeding presently under control. Anticipate them arriving to PCICU in about 20-30 minutes.

Praise God!!!

We won't be able to see him for at least another hour, I'd guess. This day has been very hard but God has clearly been with us, carrying us through.

1:05 PM - Update

They have just now come off heart lung bypass, so far so good, there is the typical bleeding that we see, so they are working on that. Chase remains very stable.

Please keep praying for our sweet baby as they finish up his surgery. Thank you!

Posted from my iPhone

12:14 PM - Update

All continues to go well, they are about 75% of the way there, baby Chase remains very stable, will send another update in an hour.

Thank you, Lord, for watching over my sweet baby boy!

11:08 AM - Update

They are better than half way there, all is progressing as planned and Chase is very stable. Will send another update in an hour.

Praise the Lord for His continued guidance and faithfulness!

10:07 AM - Update

They are still working away, Chase remains very stable. Will send another update in an hour.

9:09 AM - Update

All is going well in the OR, they are on heart lung bypass working away, baby Chase is very stable.

We will get hourly updates until the surgery is finished.

Praise God for His hand at work in that OR! Praise Him for keeping my son in His hands!!!

Posted from my iPhone

8:22 AM - Update

We got our first update, althought it wasn't an "official" update. They said Chase is doing great and is very stable. Praise the Lord! We're not supposed to start getting "official" updates until 9:00 AM.

Posted from my iPhone

6:33 AM - Surgery Begins

They took my precious boy back for surgery this morning at 6:33 AM. It was all I could do to keep from falling as I watched him be rolled down the hallway towards the OR. My heart is breaking at a human level as my baby boy is heading in for a complex, life-saving open-heart operation. But I know that my sweet son is in the best hands possible: God's.


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