No News is Good News!

We're in the midst of a rather quiet weekend here in 7C. I "officially" moved into Chase's room on Thursday so I could be here for all of his bottle feedings, which worked out perfectly since he has excelled at the bottle thing and pretty much went straight to full feeds and eliminated tube feeds from the get-go. What an incredible blessing!!!

So I have to tell you something that I've been waiting to say for a L-O-N-G time (33 days, to be exact): During rounds this morning, the "D" word was finally mentioned to us! That's right!

Discharge!!!

There is a REALLY good chance -- assuming Chase has a quiet, boring weekend -- that we will be discharged early next week! Can you believe it!? I feel like I've been waiting forever for that day to arrive! So here's our game plan: Assuming we are discharged next week, we plan to hang out here in Charleston for an extra week or so while we settle our family of FOUR into our rental house -- all together under ONE ROOF for the first time!!! Hubs and I want to have some time to settle into life with a precious newborn while we're still within a 10-minute drive from MUSC, should anything weird happen with Chase (we don't expect this to happen at all... we're just boy scouts!). We won't know until Monday, but there's a chance we'll need to schedule another swallow study (to see if we can try less-thickened milk and eventually regular milk) and perhaps another visit with the ENT folks to do a flexible bronchoscopy here in Chase's room (to see how he's healing and determine whether or not his paralyzed left vocal cord is showing signs of recovery). SO... although we might be discharged next week, it'll still be another week or two after that before we're able to make the trek back to our home sweet home. But can you believe it? There is a light at the end of the tunnel and this leg of our journey may very well be in its final stages!

Of course once we do get home, life will by no means return to the "normal" we once knew. And not just because we're adding a new member to our family. In reality, Chase is still a very fragile little guy (although he looks so incredibly healthy and normal!). We've been advised that it is extremely important that he doesn't get sick between now and his next surgery, the Glenn, which should take place when he's around 6 months old. So basically, once we're home, we're HOME -- meaning no showing off our little rock star, no church, no grocery runs, no shopping trips, etc. Basically, the only time our little one will leave the house is for his doctors appointments. And our sweet LO will have to follow suit. We don't want Chase getting sick because his sister picked up a cold while at Sunday School, so she'll be living in our family's little bubble, too. I know this is going to be so incredibly difficult for me (all of us, really), but I know it's in Chase's best interest and right now that takes precedence over everything else. So let me just say now that while I'm looking forward to being back home and showing off my amazing son, it'll be a long while before he can make public appearances. I, on the other hand, will still be making solo appearances at church, grocery stores, etc. ;) Aren't y'all excited about that!? LOL!

Well this quick little update turned out to be much longer than I expected! Hopefully there won't be much to share tomorrow (Sunday), but maybe, God willing, on Monday, I'll be able to write the happiest post ever, announcing our discharge plans! Woot!!

Thanks to my sister J for sharing these lyrics yesterday. They fully sum up my feelings regarding God's work in my family's lives!

How can I say thanks
For the things You have done for me
Things so undeserved
Yet You give to prove Your love for me
The voices of a million angels
Cannot express my gratitude
All that I am or ever hope to be
I owe it all to Thee!

To GOD be the glory, for the things He has done!!!

Hiccup!

My little monkey has the hiccups!

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Feeding Success!

Chase has had an awesome few days! He took his first bottle feed Wednesday evening and did fantastic! We did more bottle feeds on Thanksgiving at 9am, 3pm and 9pm. Then today we did 3am and 9am. Basically we've been doing every other feed with a bottle and the others through his ng tube. Well, this morning at his 9am feed he kicked butt and downed 105 ccs (just over 3 oz) so we were given the go ahead to give him ALL bottle feeds and NO ng tube feeds!! Woot!!! AND they are basically letting me be in charge of his schedule, feeding him when he's showing signs of hunger rather than adhering to the "every 3 hours" rule around here. So it's like I finally get to care for him as his MOM!! It only took 32 days to get here!

The added bonus of course is that if he keeps up the great work, the ng tube comes out later this afternoon!!! WOOT!!! We are definitely making progress to get ourselves out the door sooner than later!

We are so very thankful for how God has chosen to work in Chase's life! We know His plans are perfect and He has some great things in store for our baby boy. I continue to be humbled that He has brought Chase through this journey so well up to this point. We are forever grateful to our Lord and Savior for seeing us through the hardest time in our lives and for blessing us with our sweet little Rock Star!!


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Happy Thanksgiving!

I am so blessed! Words cannot express how grateful I am for the amazing gifts God has blessed me with!

My husband: He is my rock! He keeps me grounded when I feel overwhelmed. He spoils me and takes such great care of me. He does more for me than I deserve and I am the luckiest woman in the world to call him my husband. And if that weren't enough, he is also the most amazing father to our children. We are so blessed to have a loving, Christian man as the leader of our family!

LO: There is no better 2-1/2 year old on the planet! LO has been absolutely amazing on this journey. She's so resilient and has adapted well to her world turning upside-down these past 6 weeks. She's enjoyed spending time with her various caregivers (Thanks, D, Mona, Gramma & Pa Pa!!) and has made things so much easier for us with her (mostly) good behavior. While I might get frustrated with her at times, I so love her with all my heart and couldn't imagine a day without her in my life!


Chase (a.k.a. "Rock Star"): Where do I begin??! This little man has absolutely stolen my heart and ran away with it! I continue to be amazed by his progress through this journey. He took his first full feed this morning by bottle and did fantastic! We're going to start bottlefeeding every other feed now! I'm still anxious to find out what the game plan will be once he's taking all of his full feeds of thickened milk by bottle. God has truly blessed us with an amazing little baby and I cannot put into words how he makes me feel. I'm so proud to be his mommy!


My Family: My mom, sisters, in-laws and extended family have been an amazing source of strength, support and encouragement to me. They have lifted me up when I was down, strengthened me when I was weak and rejoiced with me over God's numerous blessings. I would be lost without them! I am so blessed to live so close to my mom, sisters and their families and see them so often (when we're not at MUSC, of course!). I have the best family in the world!!!

My Friends: Words can't express how incredible it's been to have such amazing friends to lean on for support. They have encouraged me through phone calls, voicemails, emails and text messages. It's a blessing to have awesome friends who are walking with me through this journey and who remind me that I'm not alone.

Thank you to everyone who loves me and my family and for your constant support!

HAPPY THANKSGIVING!

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Bottle Time!

Chase went for an additional swallow study this afternoon since they weren't able to gather all the information they needed yesterday. Basically, he didn't take enough of the thickened barium mixture for the doctors to gauge whether or not he could successfully handle a full feed of thickened breastmilk. So back to the lab we went!

I was very impressed with how well he handled the thickened mixture today. He took about 20 ccs in about 2 minutes! That's pretty darn good for a heart baby! We were very pleased that he took the thickened stuff without any signs of aspirating or penetrating his airway. Praise God!

So the game plan is to try to give him his first official bottle feeding shortly -- between 4:30 - 5:00 PM. I can't wait to give it a try and see how he does! My prayer is that he'll take to these bottle feedings VERY well since this in the only thing keeping us here in the hospital. Please say some prayers for my boy and I'll let ya know how he does!

On another note, HAPPY ANNIVERSARY, HUBS! Today's our big 4th anniversary! What a blessing he's been in my life!

On yet another note, Happy Thanksgiving Eve! I hope everybody has a wonderful celebration with family and friends tomorrow!

Waiting...

Well, we were told 5 minutes after Chase's first bottlefeeding attempt was supposed to begin that we were going to hold off. When they did his swallow study earlier today, they started with a regular consistency barium mixture and progressively thickened it. By the time they got to the thickest consistency, he tired out (as most single-ventricle babies do) and didn't take enough of the thickest stuff to get a good enough assessment of how he'll do with a full feed by bottle of the thickened milk. SO... We didn't get to do the bottle today. We have to do another swallow study either tomorrow or Friday (dependent on scheduling) to take more of the thickened barium mixture before we try our first bottle feed. That's what this is all about: the waiting game.

Argh.

Please pray for hubs and I (more so impatient little ME) that we'll be able to take this in stride since it's really all in Chase's best interest.

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Swallow Study Results

We finally went for Chase's swallow study this morning at 10:45 AM. He took about 30 ccs of a barium-water mix (eew!) while we watched on the x-ray to see how he swallowed and whether or not he aspirated. From my untrained eye, he seemed to do great! But we met afterwards with the speech therapist who explained the official results to us.

Apparently there are two things that can happen when Chase swallows: the fluid can aspirate, which means it goes down his throat and into his lungs (not good!) OR the fluid could penetrate, which means it starts to go towards his lungs but eventually gets pulled down the esophagus at the last second (not great). In Chase's case, the liquid seems to penetrate a lot, which can be dangerous. Apparently babies don't typically cough if fluid goes down their trachea like adults do, so we wouldn't know he was aspirating. SO... The game plan is that we will give him breastmilk thickened with cereal in a bottle today at 3:30 PM for his first real mouth feeding. He typically gets 78 ccs per feed every 3 hours in his ng tube, so we'll see how much he's able to take through a bottle and give him the rest through his tube. We may attempt another bottle for one of his evening feeds as well. As he shows he's able to handle the bottle feeds, we'll increase the frequency, giving him any remaining milk through his ng tube (so he still gets 78 ccs total at each feeding). Once he's able to take all of his feeds by bottle, we will be discharged from the hospital. But we won't be done with the feeding yet. We'll have to repeat the swallow study in 2 weeks to see if his ability to swallow and not penetrate has improved. If so, we will then decrease the amount of rice cereal being added to his milk so it's less thick. My guess (haven't confirmed yet) is that we'll do that for another 2 weeks then repeat the swallow study again. If he does well, we might then be able to try non-thickened milk. Obviously my goal is breastfeeding, but it appears we're not anywhere near that point yet.

A few things to note... Chase has a paralyzed left vocal cord. Since the cord doesn't move (the right and left should meet together to protect the airway), there is a gap that could cause him to aspirate. We were told today that 90% of babies with this gap typically fail the swallow study, are not given bottles at all and go straight to a g-tube, a feeding tube that is surgically placed directly into his stomach and is used for all feedings. So although we're a bit disappointed that Chase's timeline isn't what we were hoping for, we are happy that he'll be able to at least try bottle feeding. We pray that he does well and will excel with this.

I'm guessing we'll have some more answers and probably more questions after his first bottle feed this afternoon. I'll be sure to keep y'all updated so you'll know how to pray.

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Success!!

Chase's bronchoscopy couldn't have gone better this morning. They took him back a few minutes after 7am and he was back in the PCICU after about 30 minutes!!! The ENT doc said she was able to clear out all remaining tissue from his throat and said the healing that had take place since the last procedure looked perfect! She doesn't anticipate he'll need another bronchoscopy, which means we're on target to move forward with the swallow study tomorrow! Praise the Lord! We are so very grateful for this!

Thank you all for your prayers this morning!!!


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Moments Later...

Moments after my previous post...

Doesn't he sound great??

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Progress Report

Well, it's been an uneventful few days here on 7C. Chase has been progressing wonderfully with his feeds: he's now up to a 45 minute compressed feed with 2 hours and 15 minutes between them. His goal is 30 minute compressed feeds, which we should be at tomorrow. He's really surprised me yet again and has been processing his feeds like a champ! He has had almost no reflux which is a HUGE bonus!!! I'm so very proud of him. Oh, and he's now up to 9 lbs. 2 oz. which is further proof his feeds are going well.

So we're scheduled for first case Monday morning for Chase's next bronchoscopy. They'll take him back around 6:30 AM for the procedure and he'll head back to the PCICU for recovery, which I'm totally fine with. My prayer is that everything will go smoothly this time and he won't have any major setbacks. Please keep him in your prayers for Monday, too!

Assuming all goes well Monday morning, Chase will finally have his swallow study on Tuesday. This is a HUGE prayer need because we REALLY need the swallow study to go well so we can start working on bottle feeding! Once he's taking all of his feeds by mouth, WE WILL BE DISCHARGED AND ABLE TO GO HOME!!! So you can imagine how critical this is. I don't even want to get into what will happen if he aspirates when he swallows, so just pray that this final last key to the eating process goes well.

My boy has been sleeping the day away and I haven't been able to bring myself to pick him up and hold him since he's so peaceful! See for yourself below! I think after I post this I'm gonna have to get him -- I can't take it anymore!!! :)




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Rest & Relaxation (sort of)

Today is the first day in I-can't-remember-how-long that I've spent the morning at home with LO all by ourselves. In fact, the more that I think about it, this may actually be the first day since we came down to Charleston that I'm at home with her alone! Wow. I'm really enjoying our time together. It's just like how it "used to be" when I stayed at home with her while hubs was at work before this fun journey of ours began. So let's talk about why I'm at home with LO...

As you may recall, Chase was admitted to the pediatric step-down unit, 7C, on Sunday morning. So I went to the hospital Sunday morning and stayed there for about 36 hours straight. Let me tell you: 7C is no picnic. Chase pretty much slept most of the day Sunday. I attempted to sleep Sunday night on the lovely little plastic couch provided, but it was not happening. It never happened. So my hope was that I could make up for it Monday while Chase slept during the day... notsomuch. The door to our "private room" was a revolving one the entire day! From the expected visits from the nurse to bring his food and meds, to the maintenance folks coming in to "repair" the damaged window blinds, backed-up sink or squeaky door (none of which were fixed, by the way), to the random visits from several others, it was a tough day all around. And you can imagine how easy it was to stick to my pumping schedule with this kind of chaos. Of course my Monday started off nice and early with the ENT doc telling me Chase would need a repeat of last Wednesday's "routine" procedure. Needless to say, by late Monday, I was exhausted, both physically and emotionally.

My game plan was still to stay at the hospital Monday night, but hubs just wasn't having it. He gave me the whole speech about me running myself down, not getting any sleep, ending up sick, being useless to everyone, and so on... I knew he was right, but I wasn't sure I could bring myself to leave my precious baby boy in the hospital overnight all by himself when I had the green light to stay with him 24/7! I was a basketcase. This was the hardest thing ever. I cried when I was walking out of the unit around 11PM last night. It was as difficult as that first night I had to leave him in the PCICU after I had been discharged from the hospital. But ultimately, I have to keep reminding myself that this truly is in everyone's best interest -- especially Chase's -- as I can't be any good for him, LO or hubs if I'm exhausted and sick.

So I got up this morning intending to head back to the hospital, but unfortunately (and not surprisingly) I was not feeling well this morning at all. I slept well, but obviously needed much more to get myself back in shape. So my wonderful husband headed to the hospital to spend the day with our son while I stayed home with LO. It was great. I'm still in my PJs. We played, watched Dora, ate lunch and now she's napping. I was able to make a casserole for dinner tonight and put it in the fridge, empty the dishwasher and tidy up the living room. It's amazing the new joy these mundane tasks bring me now that I've been through what I've been through over the past 3 weeks. And I'm very happy to say I'm feeling much better as well!

So since I have a good solid hour of "free time" right now, I'm going to end this post and take myself a lovely, much-needed nap. Hopefully very soon we'll have an update regarding when both Chase's "routine" bronchoscopy and swallow study will be scheduled so I can have you all praying during those times. Thanks again to all of my blog readers -- friends, family, strangers -- who have been lifting my family up in prayer throughout this journey. I know God is with us and has never left us!

I will leave you with the words of a song that so encouraged and inspired me last night during one of my darkest moments so far on this journey. Thanks, Jen, for allowing God to use you to share these words with me at just the right time!

All things work for our good
though sometimes we can't see how they could.
Struggles that break our hearts in two
sometimes blind us to the truth.
Our Father knows whats best for us;
His ways are not our own.
So, when your pathway grows dim,
and you just can't see Him,
Remember He's still on the throne.

God is too wise to be mistaken.
God is too good to be unkind.
So when you don't understand,
when you don't see His plan,
When you cant trace His hand, trust His heart.

He sees the Master plan.
He holds the future in His hands.
So don't live as those who have no hope.
All our hope is found in Him.
We walk in present knowledge,
but He sees the first and the last.
And like a tapestry, Hes weaving you and me
to someday be just like Him.

God is too wise to be mistaken.
God is too good to be unkind.
So when you don't understand,
when you don't see His plan,
When you cant trace His hand, trust His heart.

Step Back

Last night was a bit rough in terms of sleep for mommy, but little Chase had a pretty good night. He seems to be taking to his new room on 7C quite well. Unfortunately, it's time for yet another step backwards.

The ENT folks came through this morning and did a flexible scope bronchoscopy on Chase here at his bedside. I was completely devastated when the doctor said she'd need to repeat last Wednesday's procedure to remove some additional granulation (scar tissue) from his throat. I could not believe it. You can imagine the fears and concerns that overwhelmed me when I heard this. There still isn't a clear explanation as to why Chase coded and required CPR after this procedure last week, so I'm less than confident they know how to prevent it from happening again. I am so scared!!! Plus, he'll probably have to spend the night after the procedure -- you guessed it! -- back in the PCICU. This isn't a big deal. What I'm less than excited about is I'll have to pack up our room here on 7C for the night and probably be put into a different room the very next day. ((sigh))

They also put off his swallow study until later this week since he apparently needs to be on one-hour compressed feeds and right now he's on two-hour feeds. I was looking forward to the swallow study because I just have this feeling that he's going to excel at it and that we'll move forward with mouth-feeding by bottle and eventually (hopefully) able to start breastfeeding. So ultimately today has turned into a series of steps back and/or a lack of progress forward.

I know, I know. Everyone said this would happen. I should have seen it coming. But truly, the idea of Chase repeating the bronchoscopy procedure in the OR again has me beyond frightened. What if they can't bring him back like they did last time?? I've been in tears over this all morning. I know God is still here and still is in control of Chase. I know He has a perfect plan for my son and I do believe His plan involves complete healing. He is with us through this journey. But I'm still human, I'm still a mommy, and I'm still afraid.

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!

Next Steps

Today was yet another quiet day, which we are VERY grateful for! Chase spent most of the day napping and chilling out. I got to spend some quality time with him in my arms again today -- WOOT!!! They did another echo on Chase and everything looks fantastic! Praise the Lord! Also, he got up to full continuous feeds so they've started compressing his feeds so he gets his full amount in less time. So far he's handling it well!

So as OT (the occupational therapist) was working with Chase (while I was still holding him, thankyouverymuch!), I noticed Chase's nurse started packing up his things out of his drawers, put them in bags and placed them under his crib. I knew there had been some discussion about us moving up to 7C, but I hadn't heard anything definite. After OT finished, I asked the nurse what the game plan was. She mentioned that the ball was rolling and Chase would be moving up to 7C tonight!

Whaa??

I couldn't believe it! I made absolutely sure Chase wasn't going anywhere for at least 20 minutes because I needed to go pump (TMI?). Anywho... I came back about 20 minutes later and his things were all unpacked back into his drawers and the nurse said Dr. Hsia said he wanted to wait until tomorrow to send Chase upstairs.

Oh.

Really, I didn't mind the wait. We certainly aren't in any hurry to get out of the PCICU -- the care there is very good and we are "comfortable" with our current routine. There are a lot of unknowns as to what things will look like once we get to 7C and I'm staying at the hospital with Chase 24/7 in his private room. So I asked why the change and the nurse said Dr. Hsia didn't really give a reason, which didn't surprise me. She mentioned that she thought the attending Pediatric Cardiologist may have made the call to have Chase moved upstairs without first getting Dr. Hsia's sign-off. Hubs and I have talked with Dr. Hsia a LOT and he is fully aware of how conservative we are. He's the same way, so we're guessing that was part of the deal. Like I said, we're fine with it mostly because it means one last good night of sleep for me, plus more time to pack my things for the hospital, and of course another night of care in the PCICU. So there's a VERY good chance that this time tomorrow, I'll be posting from 7C! Ack! Things will get a bit crazy then as I will be living at the hospital with Chase and hubs and LO will be staying here at our rental house. Should be interesting!

Early next week (hopefully Monday), Chase will do a swallow study where he will drink liquid mixed with barium while a radiologist takes video x-rays of his mouth and throat to determine how liquid passes into his esophagus. They basically want to determine that he will be able to successfully swallow breastmilk without aspirating on it. I'm slightly concerned about how he'll do with this only because he has a paralyzed left vocal cord as well as the area in his throat that had some granulation (which was removed during last Wednesday's procedure). My hope and prayer is that he will continue to amaze us with his outstanding recovery and that he'll pass the swallow study with flying colors! If he isn't able to drink the breastmilk without aspirating, they'll try to thicken the milk to make it less likely for him to aspirate on it. If this ends up being the case, it will definitely rule out breastfeeding for awhile. :( He may also end up keeping the ng tube (it goes through his nose into his stomach) for awhile as well, possibly even after we're discharged. There are a lot of variables and unknowns right now regarding how well he'll do with the swallowing part of eating, but I'm happy to say he's exceeded expectations with his sucking reflex! That means we're making progress towards mouth feeding... so please pray that he'll do great with the swallow part!

Ultimately our goal is to get our family back home! So the next step is moving up to 7C. Then we'll have the swallow study and work on getting our boy to eat his full feeds by mouth. From what I've heard from other families with heart babies, the feeding part is the biggest hurdle to get over before going home! I'm so happy Chase is making such great progress and I will continue to pray that my sweet boy learns how to eat quickly so we can keep up our momentum and get back to our home sweet home!

Thank you for your continued prayers for my baby boy!

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!!

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!!




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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!

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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.

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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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My Sweet Chase

This video is from the morning after Chase was born. He doesn't have anything on his sweet face and he even opened his beautiful eyes!

Can you see why I fell instantly in love??