Friday, March 26, 2010

5 Months

I tried, but I just couldn't let today go by without wishing this adorable little monkey a
Happy 5 Month Birthday!

Mommy loves you, my sweet boy!

Monday, March 22, 2010

Hiatus

So I made a decision over a week ago but forgot to tell you! I've decided to take a hiatus from blogging. Not sure yet how long. I figure rather than go several days or weeks between posts, I'll just tell you now that there won't be any for a while! Things are good and life with two kids is amazing! Chase is doing fantastic and it's our hope and prayer that that never changes.

I'll continue to tweet every now and then (look to the right if you want to follow me on Twitter) and I'll post pics n' stuff occasionally on Facebook (post a comment if you want to be FB friends), but for now the blog will be quiet.

But never fear, I will return... eventually!

;)

Sunday, March 14, 2010

So Tired!

The video is bad and a bit shaky, but if you listen closely, you can hear Chase telling you all about his day! :)

Posted from my iPhone

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.)

:)

Friday, March 12, 2010

Cardiology Appointment

Chase had his first appointment with his cardiologist today since returning home from MUSC for his Glenn. Here are some quick stats (my MacBook has a mere 8% battery remaining and I'm way too lazy to get the adapter. Sorry folks!):
  • Weight: 14 lbs. 11 oz.
  • Length: 25 1/4 inches
  • Oxygen saturation: 83%
  • BPs, heart rate, etc.: Great
  • EKG and Echo findings: Great
Overall, Dr. Horne was very pleased with Chase and how well he is doing. We'll return for a quick visit Tuesday morning to have the stitches removed from where his two chest tubes were. Believe it or not, we're getting close to spacing out our visits to be longer than every 2 weeks, which is awesome 'cause it means Chase is doing wonderfully, but also scary because it means mommy won't get the warm & fuzzy comfort and reassurance of knowing all is well with his heart quite as often.

We've also got an appointment with his pediatrician lined up for Tuesday afternoon. This will just be a quick post-surgery follow-up type thing. We've got to wait 2 months before getting his 4-month vaccinations, so we'll be quite a bit behind. No worries.

I can't say thank you enough for your prayers for us (especially Chase) through the past 2 weeks for his heart cath and Glenn surgery. We are so grateful for the love and support of our friends and family and blog readers!!!

Tuesday, March 9, 2010

Almost There

Well, it's 12:02 AM and hubs and I are ready to catch some zzzz's. We left our little fella around 11:30 PM in the capable hands of our night nurse. He had a good catnap in mommy's arms but then seemed ready for the late-night PCICU party before we left.

So he's been off oxygen for over 14 hours now and has been holding steady. In fact, it seems like he's improving a bit because he's been trending in the high 70s to low 80s all afternoon. The big test will be tonight during his "good sleep" period. Last night he dipped down to 62 and had to have the oxygen put back on. We're hoping tonight goes better and he does well without it.

IF, and I mean IF, he manages to make it through the night tonight without going back on oxygen, THEN it's almost certain that we will be discharged from the unit tomorrow without a stay on 7C. You know this is what we're praying for!!! We've asked our nurse to call if she does need to put him back on o2 during the night so we'll know better what to expect in the morning. I look forward to sharing a great report of God's answer to our prayers!

On another note, please forgive my earlier ranting about the day we had today. I've had a serious lack of sleep and an obnoxious amount of stress the past few days, and I really shouldn't take it out on the PCICU. I need to learn to deal with my own control issues as I'm sure that is the source of my problems. I just know nothing and no one is better for a child than his mommy!!!

Posted from my iPhone

Still Hangin' in There... Barely

It's been another frustrating day in the PCICU. Chase had to go back on oxygen last night around 4:00 AM. He was taken off the oxygen again this morning around 9AM and is still currently off the oxygen. This last hurdle is proving to be a BIG one. In the meantime, hubs and I are beside ourselves with frustration. We have no control. We understand we have no control over Chase and his body's ability to utilize oxygen and we're okay with that. We're on his schedule. He's in charge. What we're really irritated about is having NO CONTROL over our circumstances. We're stuck in the PCICU. We've been "floor status" for 3 days, which basically means the only thing the nurses do is check vitals every 4 hours and occasionally play around with his o2 levels. It means we're ready for 7C. The private room where WE'RE in charge. In the PCICU, we're subject to a complete and total lack of control. We can't control the noisy beeping at the baby's bedside next to us. We can't control the cleaning lady that has apparently found the absolutely loudest way to open a new trash bag when emptying out the trash. We can't control the guy cleaning the floor with the loudest machinery known to man. We can't control the nurses who approach our bedside using anything but their "inside voice" while Chase is obviously sound asleep. We can't control the fact that apparently are no beds for us on 7C.

Just a bit ago I was at my wits' end. Chase was sound asleep in my arms. It was about 1:30 PM and he wasn't due to eat until 2PM. This has been a challenge in and of itself because we again have NO CONTROL over his schedule. We try to get him on an eating schedule since I'm nursing him (and this affects my pumping schedule), but we can't do anything when the night nurse decides to feed him every 2 hours and ends up dumping several ounces of my hard-earned breastmilk. Anyway, so he's not due to eat until 2PM and I'm doing my best to keep him on a schedule during the daytime while I'm here with him.

The staff starts prepping the bed next to us for a surgery case that will be rolling in soon. Hubs approaches a nurse to ask her when the case will come in so we could make sure I can be there to breastfeed Chase at 2PM. She said I needed to go ahead and do it now so she can clear the PC as the case will roll in at 2PM. So therefore I was forced to wake my sleeping, heart-surgery recovering baby up from a much-needed nap and force him to eat 30 minutes before he was ready to do so. This made me MAD. Then, because hubs happened to ask the nurse a series of questions, we stumbled upon the fact that the nurse we had all day (and for the past 2 days) was being assigned to the new case rolling in, and Chase would be turned over to the nurse covering bed 2. What this means is that while we would be gone (kicked out of the unit while the new surgery case rolls in), a totally different nurse (and one in training with her) would take over Chase's care, without so much as a single word to us or apparently, without much of a report from our existing nurse (as she was focusing on the new case). This made me MAD. The complete lack of control, the complete lack of communication, which could definitely have an impact on the care and well-being of our son, the apparent lack of respect we are receiving as parents...

I am MAD.

Monday, March 8, 2010

Hangin' in There

It's been a frustrating and irritating and tiring and exhausting and difficult day. We started out by having his chest tube removed, which was fantastic! That only left us with ONE minor hurdle to overcome... oxygen support. At least I thought it would be minor.

He's been hanging out with decent saturation while on a whopping 1/8 Liter of oxygen. That's about 22% oxygen. To put it in perspective, the room air that we all breathe is 21% oxygen. Ya, just one tiny little percentage point different. But apparently, Chase really likes that 1%.

We've tried weaning him completely off oxygen twice today. Both times his sats would dip into the mid- to upper-60s. And both times he ended up back on his whopping 1/8 Liter of oxygen. Talk about frustrating.

And let's top it off with the fact that we've been third in line for a bed on 7C all day. One patient went up around noon. The next one, not until 7:30 pm. So that means that we're still hanging out in the PCICU, unable to go upstairs and unable to bring our boy home where he belongs.

It's been a draining few days for me both physically and emotionally. It kills me to leave my baby at the hospital to go home each night, not knowing if he's being cared for the way we want him to be cared for. It's tough not spending any time with my sweet LO, although she's none the wiser since she's being spoiled 24/7 by her dear Gramma and Pa Pa (for which we are eternally grateful!). I just want to make some progress toward the finish line. I feel like we're stuck on the side of the road. I guess it might be because we've been here for almost two weeks since we had the cath procedure before the Glenn. I know it's ridiculous to feel this way since so many families are here for such a long time (think Baby A who just went to 7C this morning after 5 continuous months here). But for me, it's hard, regardless of the length of time because no one wants to have their child be in a hospital, no one wants to be away from their other child. I want us all together again and that truly is right around the corner. I guess the monotony of this leg of the race is getting to me today.

Update: It's 11:58pm and we're heading out of the PCICU. Chase has been off oxygen again, this time since around 10pm. He's holding his own. Let's hope and pray he makes it through the night without help keeping his sats up. The good thing is his nurse tonight is known as "The Weaner." Apparetly she's known for getting her patients to wean off whatever they need to. Make her proud, little guy!! :)

Update: it's 4:17am and hubs just called up to the PCICU. Apparently our boy dipped into the low 60s while sleeping and needed the oxygen turned back on. I don't understand how his sats were great (88ish) before the cath and Glenn, and so unstable now. They opened the coarctation in his aorta, patched (widened) his pulmonary arteries and increased the flow of oxygenated blood to his upper body. How is it doing these things made his sats worse and not better??!!!

Hopefully the morning will bring progress our way! And some explanations, too!

Here's a pic from one of our brief moments without o2:



And o2 back on again, sort of:




Posted from my iPhone


Waiting for the Plan

Somebody had his chest tube pulled this morning during rounds! We're happy to say we're third in line for a room on 7C! Chase is still on a tiny amount of oxygen support (1/4L) since he has a hard time keeping his sats up when he's mad, but we're hoping and praying he'll lose it later today. Our goal is to get to 7C today and discharged tomorrow!! Please pray along with us for this.

On an awesomely happy note, the baby that's first in line for 7C today is a little guy that was born a few weeks before Chase and has been here in the PCICU since birth. He had a slew of challenges but made a lot of improvement a while ago and will finally be heading home soon!! Praise the Lord!!!


Posted from my iPhone

Sunday, March 7, 2010

A Chest Tube & Some Oxygen, Part II

Well, Dr. Bradley did rounds this morning and said he was "inclined" to leave Chase's chest tube in for another day. Honestly, I wasn't surprised or disappointed. His output was about 24 mLs over 24 hours and they prefer it to be closer to 12 mLs over 24 hours. We're very close, but not quite there yet. He is down to 1/8L of oxygen so we're really close to losing that support as well. It sounds like the plan will be to hopefully remove the chest tube tomorrow (Monday). They'll want to keep him overnight after the chest tube is removed, so it's looking like Tuesday is our earliest discharge date. Hubs and I are totally and completely fine with this. We know it's all about Chase and his timing, not ours. It sounds like 7C is still full so I'm guessing we'll stay in the PCICU tonight and possibly tomorrow night and be discharged from here. If a bed opens up on 7C tomorrow, they might send us up there for the night and be discharged from there on Tuesday.

Chase is finally starting to act like himself again. We know he takes a good 36 hours or so to really come off of anesthesia and perk up a bit, so it wasn't surprising that he's taken awhile to get back to a more "normal" personality. We're just so very grateful for his incredibly recovery and for the amazing surgeon, doctors and staff here to care for him. We are blessed!!!

I'll keep you posted on his chest tube progress... hopefully he'll lose it tomorrow! And I'm pretty sure we'll lose the oxygen support later today or by tomorrow at the latest. My awesome boy is making his momma so proud!!!

Thanks again for your continued thoughts and prayers!

He's Baaack!


Posted from my iPhone

Saturday, March 6, 2010

A Chest Tube & Some Oxygen

Chase had another fantastic night. He slept well and ate well (5 oz. this morning!!). They took his arterial line and his bulb chest tube out this morning. They have figured out his bp medicine dosage an have his blood pressure under control.

Right now he still has one chest tube in because the amount of drainage is borderline for removal, and as most things are here in the PCICU, Dr. Bradley took the conservative route and decided to leave it in another day. We're fine with that because we're in no hurry and trust Dr. Bradley immensley.

His oxygen saturation hasn't been the best so he's still on oxygen to help him keep it where they want it to be. This doesn't surprise us as Chase tends to need a little extra support when coming off of anesthesia. The plan will be to wean him off over the next 24-48 hours.

Based on how well he's doing, I would not at all be surprised if we were to be discharged on Monday, assuming nothing unusual or unexpected happens. We are so very blessed and grateful for our sweet son and his miraculous recovery from his second heart surgery. Praise be to God! And thank you to our frends, family and blog readers who have been lifting us up in prayer!



Posted from my iPhone

Friday, March 5, 2010

Too Funny!

One of the things that really comforts Chase is holding mommy or daddy's finger in his hand. Almost every time he's held, whether it's to calm him down, nurse him or get him to sleep, he'll always reach for a finger to hold. Especially now as he's recovering from his surgery an can't be held, he looks for a finger to hold and comfort him.

Hubs and I got a good laugh when we came in this morning to see him. His nurse rolled up a piece of gauze and put it in his hand as a good substitute. Not surprisingly, it worked!! Too funny!


We're happy to say that he had a great night last night and is going wonderfully. Our expectation is that he'll lose his RA line, arterial line, foley catheter and possibly chest tubes today. He's not on any meds intravenously and is only taking lasix, zantac, oxycodone (every 4 hours), Tylenol (every 6 hours) and now, his newest addition, enalapril, a blood pressure maintenance medicine that he'll be on for a few years if not forever. I'm so very pleased with his progress and am so very grateful for God's touch on him during this difficult time. His name be praised!

On a totally random note, hubs and I ate dinner at The Early Bird Diner ALL BY OURSELVES last night. I think that might be construed as a "date night!?" The first one in more months than I can count! ;)


Posted from my iPhone

Thursday, March 4, 2010

Day 2

Chase has continued to rock today! He was extubated and had a follow-up with ENT. He woke up a bit and was able to finally have something to eat. The ENT doctor, Dr. Halstead, said the granulation/irritation in his throat (from his first surgery) was gone and looked fantastic! She did say his left vocal cord was not moving, which really worried me, but Dr. Halstead wasn't worried and said it was most likely because he was still somewhat sedated and tired. She said we could go ahead and give him a bottle and see how he responds. I he has trouble, we'll reevaluate him.

We did give him 50 mL of cherry pedialyte and durn skippy did that boy go to town! Afterwards he was content and went back to sleep. He looked so peaceful. We'll be back tonight after rounds to give him his first bottle of milk in almost 48 hours! Yay!!

Here's a quick clip from earlier this afternoon while he was awake. Such a cutie!!!

Posted from my iPhone

Thursday

Hi, all! Chase had a good night last night and is having a great day so far today. He's weaning off the ventilator and should hopefully be extubated within a few hours. He's still rather sedated although he's off of most of the "big" pain meds. His stats all look great!

One thing we need prayer for is his ENT consult. It sounds like they want him to be seen by ENT before they clear him to start eating. If you know anything about Chase, you know he likes to eat! So if they can't come by today, it will be another day before he can eat! I also heard mention of another swallow study, which scares me!! You remember that he didn't pass his swallow study after his first surgery and was on thickened feeds until he was 10 weeks old?! I can't imagine if this happens again and I have to give up nursing for several months. Please be praying with us regarding this!

Here's a short clip of Chase from last night. He looks about the same this morning.

Posted from my iPhone

Wednesday, March 3, 2010

To our Church Friends & Family

Thank you so much for following our journey and lifting us up in prayer!

We appreciate your comments but would like to ask you to refrain from mentioning us by name in any of your comments. Although you may know us personally, I keep this blog anonymous and do not post our names or hometown for safety and security reasons. We did provide Chase's name on the blog to make it easier for family and friends to pray for him, but we refer to our daughter as LO ("little one"), my husband as hubs and I am mom2lo. Please do your best to keep from mentioning our first or last names on the blog.

Thank you for your understanding!!! We love you all and appreciate your support!!!


Posted from my iPhone

My Sweet Boy!

We just got back seeing Chase for the first time following his surgery. We could only stay for about 5 minutes as they need another 2 hours to continue to get him settled and get his pain under control. I can't wait to spend time by his side soon!

I took some pictures today and I'm posting them in a very specific order. The first one is from far away, then a close-up followed by a picture that shows his battle wounds from today's surgery. You may not want to scroll down to see all the pics... Consider yourself warned!

Here he is resting comfortably in his new crib in bed 4:







Scroll down only if you want to!




This is a close-up of his sweet face. You can see how swollen he is feom the fluids. We've been told he's going to have "the mother of all migraines" as the upper half of his body adjusts to the changes in his blood pressure.









This last one is the hardest to look at. Be warned!





Here he is with most of his lines and tubes showing. He's heavily medicated and isn't in pain, praise God!



We'll spend some time with him later tonight and get the good scoop from the nurses (the ones who are REALLY in the know!).

Thank you so much for your prayers for our little Rock Star today. God definitely has had His hand on Chase and has answered the prayers of His people!!!

Posted from my iPhone

Summary

We met with Dr. Bradley a few moments ago to discuss Chase's surgery. Everything went very well! He was able to patch the pulmonary arteries and connect the SVC to the pulmonary artery. It turns out he WAS able to access his coarctation and patch that narrowing as well, which is a wonderful blessing! Hopefully that will eliminate the need for us to bring him back for additional balloon procedures in the cath lab. Praise the Lord!!!

We were told we should be able to go back to see him in the PCICU around 4:15 PM, so I'm counting the seconds!!!


Posted from my iPhone

Glenn Surgery is Finished!

3:08 PM - They have just arrived over to PCICU. Dr. Bradley will be over shortly after getting baby Chase tucked in.


Posted from my iPhone

Glenn Update #7

2:09 PM - They are off heart lung bypass, everything going as planned. Baby Chase remains stable. Will be over to PCICU in about 45 minutes to an hour.

Yay! Praise the Lord!!!

Posted from my iPhone

Glenn Update #6

1:04 PM - Soon to come off heart lung bypass, all is well, baby Chase is very stable.


Posted from my iPhone


Glenn Update #5

12:03 PM (sorry this is posted late... we were eating lunch) - So we are about 75% of the way there, all continues to go well.


Posted from my iPhone

Glenn Update #4

11:09 AM - They are better than half way there, all is well, baby Chase remains stable.


Posted from my iPhone


Glenn Update #3

10:09 AM - They are working away, he is on heart-lung bypass, all is going well.


Posted from my iPhone


Glenn Update #2

8:47 AM - All is going well in the OR, anesthesia went well, they are now working with the scar tissue, typical amount this far, baby Chase is very stable.


Posted from my iPhone

Glenn Update #1

I just handed over my sweet boy to the anesthesia team to take him back and begin the procedure. We won't get our first pager update until 9:00 AM so it'll be quiet here on the blog until then.

Please continue to keep our precious son in your prayers this morning and throughout the day. We've been told the surgery will probably go until at least 2:00 PM.


Posted from my iPhone

Tuesday, March 2, 2010

Surgery Day!

Chase is to report to MUSC Admissions tomorrow at 5:30 AM for his second heart surgery. We took him in today for his pre-op appointment, thinking it would just involve bloodwork and maybe a chest x-ray. We were there for 3 hours. The good thing was they moved us along pretty well, it's just that it was much more than we were expecting. We were planning at some point to meet with the surgeon, Dr. Bradley, to ask questions and discuss the procedure but had no idea it would be part of our visit today. Hubs and I scrambled to write up our questions as we took Chase down for his chest x-ray. They were able to draw his blood (after only 2 sticks) and took all of his vitals. Hubs spoke with one of the anesthesiologists while I was helping hold Chase down for his bloodwork. We both sat down and talked with Dr. Bradley about his surgery.
  • Chase will have the bidirectional Glenn procedure. At a VERY high-level (I have no medical degree, folks), this basically means removing the gortex BT shunt that was placed during his first surgery, disconnecting his superior vena cava (SVC) from his heart and connecting it to the right pulmonary artery (RPA).
  • Dr. Bradley will also patch Chase's pulmonary arteries (both right and left) since both of them are narrowed. This will help make them larger and is very typical for this procedure.
  • While his echos have shown a mild to moderate leak in his tricuspid valve, Dr. Bradley does not plan to address this during tomorrow's surgery. The circulatory changes with this procedure will relieve some of the workload from his heart, which should in turn decrease the valve insufficiency.
  • The narrowing of Chase's aorta (coarctation) may or may not be addressed tomorrow. Basically, the cath procedure from last Thursday, where they ballooned the narrow section, did increase the size a bit but certainly not enough to eliminate the added pressure of blood flow through the area. This causes unnecessary added stress on his heart. Dr. Bradley will attempt to get to the coarctation and see how difficult it would be to access the area through the scar tissue. If he feels he can get to it safely, he will do so and will patch the area similar to how he'll patch the pulmonary arteries. If he can't address the coarctation surgically, we'll be bringing Chase back to MUSC in a few months for another cath procedure to balloon the narrowing. We'll continue to repeat this until the narrowing goes away.

So that's our game plan in a nutshell. We'll take Chase in at 5:30 AM, head to the surgical holding area, and they'll take him back to begin around 6:15 AM. Anesthesia will get started first and prepare the way for Dr. Bradley to begin around 7:30 AM. The longest part of the surgery will most likely be cutting through the scar tissue that's formed since his first surgery -- this could take 1 to 3 hours, depending on the amount of scar tissue. We will get a pager around 8AM and should receive our first update on Chase at 9:00 AM. I will update the blog, Facebook and Twitter with each of the pager messages I get, which should be close to hourly starting at 9AM.

Please pray along with us for a successful surgery. I know Chase is strong and I know God has a plan and purpose for his life. I know this is the road God chose for us and for Chase before he was even conceived and I am proud to walk this journey by his side. I am so very thankful for my husband, who is holding my hand along the way, and for the blessing of our sweet LO. And for the support of our family and friends who have lifted us up in prayer. God has been so good to me and to my family, and I believe His grace is sufficient to see us through another surgery as His power is made perfect in our weakness (and boy do I know I'll be at my very weakest in the morning when I hand my baby boy over for another heart surgery!).

Thank you in advance for your thoughts and prayers tomorrow!

Random Musings

It's been a few days since my last post (when Chase was discharged) and the family has been enjoying some "together time" in anticipation of Chase's surgery tomorrow. I'm finding it hard, especially this morning, that each time I do something (change his diaper, nurse him, give a bottle, kiss his forehead, tickle him 'til he giggles), that it will be the last time I get to do that something for several days. I haven't begun thinking about physically turning him over to the surgical team in the morning... I'll probably wait until later tonight or tomorrow morning to officially begin to get worked up about this next surgery. On the one hand, I'm looking forward to it because it's going to relieve some stress from his heart after the circulatory changes are completed with this procedure, he'll be healthier and able to do "normal baby" stuff (like meet his family and church friends!). On the other hand, I'm a mommy and it obviously scares me to death to know my baby is having his chest opened and heart replumbed again. We'll have several days of recovery, of watching my baby lie in his bed in the PCICU completely doped up on pain meds to keep him comfortable, a breathing tube down his throat, IVs and lines everywhere... I know what to expect this time around, but it surely won't make it any easier. The first time around, he was my newborn baby: so tiny, precious and new. This time around, he's my son: a melancholy personality, full of smiles and giggles who likes to be comforted in mommy's arms. I know him. He's part of our family. He makes our family complete. This will be hard.

We haven't been given anything "official" in writing or anything that says his surgery is scheduled for tomorrow; but we heard it from several reputable sources (including the surgeon Dr. Bradley). We also have to take Chase to MUSC at noon today for some pre-op blood work and possibly some other tests (echo, x-ray, etc.). And the fact that they discontinued his aspirin last week all add up (to me, anyway) to mean that his surgery is a go for tomorrow.

Now, hubs and I haven't had an opportunity to sit down with Dr. Bradley and discuss the surgery yet. We don't know how long it will take, what exactly he plans to accomplish, what risks are involved, etc. As far as we know, there isn't a meeting scheduled yet for this to happen. I can't imagine it will be first thing tomorrow morning before his surgery... Hubs and I have some questions we'll want to ask as well, so we're expecting some kind of meeting will be scheduled prior to his surgery.

((On a related note, I just got a phone call from MUSC Admissions calling to confirm Chase's information for his procedure tomorrow... Guess we're on!))

Please be praying for my sweet baby boy as he prepares to go in for another life-saving operation. My hope and prayer is that his recovery this time around will be much quicker and easier than his first surgery when he was 7 days old. I will keep everyone updated on things here, and on Twitter and Facebook.

Oh, and I also plan to write a post explaining the Bidirectional Glenn procedure so you all will know a little bit about what is going to happen during the surgery.

Thanks in advance for your thoughts and prayers!