All Clean!

Mommy gave Chase his bath tonight for the first time! It was a tiny bit tricky, but nothing I couldn't handle. Once we move up to 7C, I'll be the one and only person in charge of his care, so it was nice to get a quick trial tonight with a nurse standing nearby for support. Check out my cutie, wearing his very first outfit -- at only 18 days old!






This is kinda hard to see since the lights are low in the PCICU right now (it's after 11pm), but here's my little man with his daddy!

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Hoarse

My poor sweet boy! He still has a paralyzed left vocal cord so he sounds very raspy and hoarse. The good news is it's actually improved a bit from last week. The bad news? It's just plain pitiful!

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LO Says Hi!

So hubs, LO and I are headed to the local outlet mall to do some shopping while Mona sits with Chase (he's doing great, by the way). I've been wanting to get out and do something "normal" for a bit before all of our family "help" leaves tomorrow and we're down to just the four of us. Plus, there's been talk about us stepping down to the pediatric floor, 7C, in the next day or so, and when that happens, I won't have much control over my time as I'll be staying at the hospital 24/7 with my little guy. Woot!!

Anyway, I figured it's been awhile since I've posted something about our precious little one, so here she is in the car with her abbreviated version of "Twinkle, Twinkle." Enjoy!

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Content

Our little guy is having a nice, quiet day today. This is a much-needed break from yesterday's fiasco! He's been awake and alert and very content, which makes me feel good. After some prodding and nagging on our part, they finally restarted his feeds around 9AM. He hadn't had anything in his tummy since 4AM yesterday morning, the poor guy! I think the food is a big reason he's so happy today. As result of yesterday's mishap, he still has an arterial line in his leg and a foley catheter which means I still can't hold him. I'm hopeful these lines will be out tomorrow morning and I'll be able to get him in my arms again then.

Thanks to everyone for your continued prayers for our sweet little Chase. God isn't through working a miracle in his life. Stay tuned!!!

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Apology

I'm sorry about my last few posts today. It's been a very frustrating and difficult day -- not at all what I had expected.

We got back to the PCICU around 9:30 PM and I was able to speak with his nurse again. After discussing what transpired during shift change this evening, she mentioned a few more details she had left out when I called earlier. Bottom line was she didn't feel as though Chase was truly ready to be extubated and thought it would be best for him to wait. She did admit there was a LOT going on in the unit at the time, which really didn't make me feel any better about her decision, but I'm happy to say Chase is being extubated as I write this. We should be able to see him in a few minutes.

I guess I just wanted to apologize for my negative attitude when writing my posts today. I just haven't been in a good frame of mind after all that's happened today. Please forgive me!


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Seriously?!

Just found out my son finally woke up after his tumultuous afternoon around 7:15 PM and the doctor ordered for him to be extubated. Unfortunately the nurse was busy and needed to get report on another patient so she gave him some morphine instead and decided he'd probably wake up again around 9PM and he could be extubated then instead.

Seriously.

Two extra hours of being on a ventilator that he doesn't need. Two extra hours of that endotracheal tube resting on his sensitive throat right where he was operated on earlier today to remove the irritation caused from him being intubated for almost 2 straight weeks! Two extra hours of TORTURE for my son!!!!!

This is NOT a good day.

Stable

My boy is stable. We're waiting for him to come out of the anesthesia so we can CPAP him and get that durn breathing tube out.

So here's my baby before his minor procedure:


And this is him now:


It hurts this momma's heart to see my baby like this again, knowing I can't hold him for who knows how long. I'm just grateful he's stable and there's no sign of permanent damage as of yet.

Please keep praying!!!

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Not What We Expected

Chase was taken back for his bronchoscopy this morning around 11:15 AM. The procedure was supposed to last about an hour. We just met with the doctor a few moments ago and were told some devastating news. Apparently the procedure went perfect and Chase was breathing on his own the entire time. Praise God! We knew he might need to be intubated, but if he was breathing well on his own during the procedure, intubation probably would not be necessary.

Unfortunately after the procedure was complete, as they were rolling him out of the OR, his oxygen levels plummeted and they had to immediately return to the OR and begin chest compressions (CPR). They also had to intubate him in order to get him breathing again. They explained that they really don't know why he suddenly had the breathing problem, but they do know the portable oxygen tank in his bed was either missing, empty or not working properly. In other words, our son was perfectly fine until he was removed from the OR oxygen, placed back in his bed and they realized the issue with his portable tank. His blood pressure, heart rate and o2 sats plummeted, causing him to crash. As you can imagine, hubs and I are beside ourselves. This was supposed to be a quick and simple procedure, and it's turned into our worst nightmare. Right now they are in the process of stabilizing Chase in the PCICU, starting an arterial IV line and doing an echo to see what (if any) damage was caused to his heart, lungs, brain, etc. during the chest compressions. We are hoping and praying they don't find any new issues with our sweet boy. He's made such great progress following his open-heart surgery and it's killing me to know what impact this "minor" procedure had on him -- due to failing to verify his oxygen tank was working properly prior to his surgery.

Please take a moment to pray for our sweet Chase as the ramifications of this are evaluated. We know God is in control and is holding our son's life in His hands and we hope and pray He will heal him from this and that we'll return to the road towards complete recovery.

Uncomfortable

Today was a rather quiet day for us in the PCICU. We found out this morning when we called that Chase had been moved to another "room" in the unit. They aren't really rooms but more like "slots" in one big room. We weren't sure why we were moved after 2 weeks in the same spot, but were told it had to do with how they pair the patients with the nurses. ((sigh)) I miss my cozy corner spot where it's dark, quiet and away from the germs that fly in every time the doors open. It's not a big deal though -- we just miss our old spot.

So Chase seemed to be feeling a bit uncomfortable most of the day today. They are still looking into whether or not he has an infection. His white blood cell count was slightly elevated, but they won't get the "official" results back on that until tomorrow. He's been increasing on his continuous feeds but had quite a bit of residual in his tummy this afternoon. I wasn't sure if that was part of what was making him seem uncomfortable or not. He also seemed to be moving his feeds along rather well but wasn't having great stools. Maybe that was the culprit? I don't know. It was a bit annoying today because we felt like we had to stay on the nurse to be sure Chase got what he needed, when he needed it. Even Chase's surgeon came by at one point to check on him and seemed a bit concerned that they hadn't started antibiotics yet even though they had concerns about an infection. That was around 1PM and I kept asking about the antibiotics, which still hadn't been administered when I had to leave the unit at 4:30PM. There was also blood cultures to be drawn, urine to be tested, feeds to be resumed, etc. and none of this had been done when I left. It was very frustrating since the entire time we've been in the PCICU, we've had EXCELLENT and ATTENTIVE care by an outstanding group of nurses who truly cared for Chase and his every need in a very timely manner. I guess now that his recovery is progressing so smoothly, he's not as "high maintenance" as he once was so there's less urgency in his care. I'm not a fan of this mindset!

Anyway, it was pretty quiet today with the exception of the issues we had with his care. Hubs and I are going back up shortly so we can follow up to be sure that all of the things that were supposed to be done, actually were done. Plus, I'm sure I don't have to tell you what a HUGE blessing and joy it is that I can finally hold my son pretty much any ol' time I want to! It's so amazing to hold him in my arms and stare into his beautiful face. God truly has given us a miracle from above!

As far as we know, we're still scheduled for the bronchoscopy tomorrow afternoon. I've been assured this is a pretty minor procedure. In fact, Chase won't be intubated for sure. They'll do the procedure and when they're done, if he needs the help, he'll be intubated but only for a short time. Once he's back in the PCICU and comes out of the anesthesia, he'll be extubated. So it made me feel better to know he won't 100% for sure have a breathing tube put back in, and even if he does, it'll only be for a short time. Whew!

Please do pray for Chase tomorrow around 1PM as he goes to the OR for this procedure. I know God has had His hand on Chase from before we even knew he would be joining our family, and He has been faithfully watching over our precious son since he was born just 15 short days ago. We look forward to a positive report tomorrow afternoon!

Thanks for your continued thoughts and prayers for our sweet boy!

Please Pray

So we had some unexpected news today that will result in Chase returning to the OR on Wednesday. Luckily it isn't a heart-related issue. Chase was seen by an ENT doctor today and she put a scope down his throat to see if there had been any damage to his vocal chords either during the surgery or when he was extubated. Unfortunately they found two issues.

The first problem is that his left vocal chord is paralyzed and is not moving. We are hopeful this is not a permanent issue but we will not know for sure until he gets older. Probably within the next year or so we will know what impact this will have on him. According to the ENT doctor, the impact should be minor in the sense that Chase just won't be able to sing any high opera notes when he grows up. But he'll still be able to talk and yell (yippee!) so we're not terribly concerned about this. It still isn't news we wanted to hear, but it could be much worse.

The second issue they found is the one that will put him in the OR on Wednesday afternoon. Apparently there is some scar tissue near the back is his throat that most likely was caused by the breathing tube irritating his throat. They plan to take him to the OR to remove that scar tissue before it causes further complications. The prognosis for this is good, but they won't know for sure how bad it is until they get him into surgery. The thing about this that upsets me the most is that they'll have to intubate him again for the surgery. This seems counterintuitive to me since it was the breathing tube that caused this issue in the first place! They tell me it will be removed within an hour or so after the surgery, but it just bothers me to know he'll be taking a step backwards in his recovery. Ultimately we have been blessed beyond measure with how well Chase has recovered so far so this truly is a very minor setback. But it just kills me to know my baby will be back in for another surgery and back on the ventilator. My hope and prayer is that the procedure will go well without any complications and they won't find any additional areas of concern. Please begin praying for Chase even now as his little body continues to recover from all of this and as he prepares for another operation.


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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!

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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!!!

Extubated!!!

Look at them cheeks!

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A-M-A-Z-I-N-G!

Check this out! I got to see my boy alert and awake for a brief period this afternoon!!!



Chase had a really wonderful day today! He had his first CPAP trial this evening at 4:00 PM and did a-m-a-z-i-n-g! It was supposed to last for 30 minutes but he ended up going for 40 minutes. His blood gas afterward looked fantastic! The respiratory therapist that did the CPAP told me that he didn't see any reason Chase wouldn't be extubated by NOON TOMORROW!!! Of course he still has another trial tonight at 9:30 PM and again at 3:30 AM, but my hope and prayer is he'll sail through those trials as well and be totally ready to lose that breathing tube tomorrow! WOOT!!!

Please be praying that our little Rock Star will continue to impress us with his incredible recovery. God gets all of the credit here! He made my boy into quite the little stubborn fighter and I couldn't be more grateful!

Cutie Pie!

My boy is still quite the little champ! He had another great night last night and we couldn't be more pleased with his progress! When I came in today I was VERY excited to see they removed the cerebral oximeter from his forehead so I can see more of his handsomeness! That durn thing was so big and bulky and looked terribly uncomfortable so I was ecstatic to see it was gone! Check out his cuteness in the short clip below.

So we've successfully gotten off the morphine drip and the next one to go will be the dopamine once Chase is ready. I'm really happy that we'll CPAP this afternoon at 3:30 pm, which basically means they'll turn off his ventilator (which, by the way, is already on it's lowest setting!) for 30 minutes and let him breathe on his own. There's still a slight push of air helping him, but basically this is going to test his ability to breathe on his own. They'll do it again at 9:30 pm and possibly again another 6 hours later. It all depends on how he responds as to how many times they'll do it. Please pray that he will continue to be a little rock star and handle breathing on his own well. There's a good chance he will be extubated tomorrow afternoon if all goes well! That is my prayer -- I am desperate to see ALL of his handsome face again! And I think there's a good chance I'll be able to hold him soon, too! Woot!!!

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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!


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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!!

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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!!