Cinco | 1 Month

Sweet Cinco is one month old! Silly mommy was SO exhausted from all of the unexpected doctor visits, appointments, and procedures all over the Upstate that I couldn't pull myself together to grab the Nikon and take proper photos. So here are a few pics of my sweet one month old babe!

Enjoy!

Squish is One Month Old!

My sweet Squish is one month old! I just love this guy. He's the best! He's so laid back and calm... the absolute perfect recipe for a fourth child!

We've had a great first month with him! His first week started out a bit rocky, but things have since calmed down and we're all adjusting nicely to our new routines as a family of six!

We went to the pediatrician for his one-month well check on July 22nd, and he's up to 10 lbs. 15 oz. (65th percentile), 22.25" long (91st percentile!), and his sweet head measured 15.5 cm (95th percentile!). So, obviously he's gonna be a smart one! LOL!

Just for fun, check out this little guy's one month pic! Any guesses?

Welcome, Baby O!

Please welcome the newest member of the mom2lo family!

Baby O

Nickname: "Squish"

Tuesday, June 13, 2017

5:25 PM

8 pounds, 1 ounce

21 3/4 in.

Unveiling

I caught the spring cleaning bug (more on that later) and happened to come across my remaining stash of Chase's birth announcements. I then realized I hadn't posted it in all of it's cuteness here on the blog for all to see. So without further ado...



(Of course I had to blur out his last name, and on the bottom it said "hubs, mom2lo and big sister LO" -- except only using our real names -- so that was blurred out as well. But you get the picture.)

:)

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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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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