Fantastic News!

My son? You know the one that's a little Rock Star?

He's being discharged today.

That's right!! He's doing so well (praise the Lord!) that we get to take him to our rental house today and hang out with him there before his surgery, which is still scheduled for Wednesday!

What am answer to prayer! Thank you all for praying for us through this journey. I know we'll all be more comfortable at the house than stuck on 7C.

Yay!!!


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48 Hours

What a difference 48 hours can make! Here is Chase after his cath procedure on Thursday...


And here he is right before bedtime tonight:


Our sweet boy is back!!! I'm happy to report that he was completely weaned off his oxygen today and is holding his own! His o2 saturation stays around 80, which is fantastic! He's eating well, resting well, and even playing and smiling well! We're so happy!

So I'm also super-happy to say that all the "drama" of Dr. Jerk is finally over. Hubs and I have spoken with several other docs over the past 24 hours and ALL of them have been extremely encouraging and put our minds at ease. Here's a quick breakdown:

• Chase is ready for the Glenn. It's the 2nd of 3 surgeries he'll undergo to ultimately re-route his circulation so his blood will automatically flow to his lungs, freeing up his single-ventricle heart to pump blood to his body.
• The issue with his pulmonary arteries is very normal for hypoplastic heart babies. In fact, patching the pulmonary arteries is essentially a component of the Glenn surgery by Dr. Bradley here at MUSC. It's not uncommon. It's not weird or different. It's NORMAL.
• The issue with his coarctation may in fact still exist, but it's not as bad as Dr. Jerk made it out to be. I believe there was SOME improvement simply because it affected Chase's oxygen saturation to where his new "normal" is high 70s to low 80s versus the normal 88-89 we'd been seeing for the past 3 months. The coarc will NOT be addressed surgically. Really, there's no reason to. If his coarc becomes a problem in the future, he'll simply come back for another cath to balloon the narrowing. We've been told it's not unusual to have more than one balloon procedure and that it's not uncommon for the issue to go away completely as Chase gets bigger. Again, it's NORMAL.
• The issue with his leaky tricuspid valve (that we weren't aware of) is also something they see often. Since it's the valve between the right atrium and right ventricle, it's been working REALLY hard since Chase's first surgery. It will get some relief after his second surgery so it will most likely improve (or at least not get any worse). I've heard the valve insufficiency is considered mild to moderate, and it also will most likely not be addressed surgically at this time. For the love of all things, this too is NORMAL.

Whew! Take THAT, Dr. Jerk! So it all basically boils down to Chase having the Glenn surgery. Plain and simple. No additional complications going into it that would make it significantly more risky than it already was. This puts my mind at east like you wouldn't believe! So now I can just focus on worrying about the Glenn and not "all the other stuff" that I was totally and completely freaked out about yesterday.

Lastly, I wanted to mention that The Man, Dr. Bradley (Chase's surgeon) stopped by our room on 7C today. Hubs and I had a chance to talk with him and he basically said what I listed above in the bullet points. Whew! Also, he said he will most likely put Chase on the surgery schedule for Wednesday, March 3rd. There's a chance we'll get bumped or postponed until the following week, simply because Dr. Bradley is the only cardiothoracic surgeon at MUSC right now and there are a LOT (unfortunately) of little ones that need his surgical expertise. But for now, we've been told our plan is to sit tight on 7C until the big day arrives.

So that's the latest and greatest. By George, I think I've finally caught you all up to this very moment! Now it's time for some SLEEP for this tired mama! :)

Ugh

Just a warning that this is all a bunch of random happenings over the past 48 hours and my 1 hour of sleep obviously isn't cutting it so this post will probably not make a bunch of sense and may be out of order and weird. Consider yourself warned.

So sorry to leave everyone hanging out here without the latest and greatest (and not so great) info on Chase. Yesterday I was very anxious during his cath procedure and posted updates every hour when I got them from the cath lab. Once the procedure was complete, my time no longer was my own. He was put in the PICU (since there wasn't any room in the PCICU) to recover from his cath and slowly come off the ventilator, which he did. They put him on oxygen after extubating, which is typically standard protocol, but worried me. Chase had been intubated and extubated 3 times before and he never had to go on oxygen after extubation. His sats were still low, which was assumed to be because he was still coming off the anesthesia, so he definitely needed the o2 boost.

We were supposed to move to 7C, but apparently, even though a bed was scheduled and ready for us, somebody somewhere dropped the ball and gave our room away because we went to the PICU first, instead of directly to 7C. So as of 5pm Thursday, there was no room on 7C and I was told Chase would spend the night in the PICU (where parents can visit but there are no overnight accommodations). So I left the PICU Wednesday evening with the plan to come back to the hotel, eat a quick dinner with hubs and LO, then go back up to the hospital for a few hours before going back to the hotel to try to get some sleep. As you can imagine, I didn't get any sleep Wednesday night since I was worried about his cath procedure and it was an early morning, etc. I was tired.

In the PICU, my son was obviously uncomfortable. He wasn't sleeping well, and when he was awake, he was extremely fussy and irritable. I soon saw the doctors approaching with rounds and was looking forward to getting my questions and concerns addressed. Imagine my surprise when they stopped a few feet from his bed, said that this was a "heart baby" who should've been in Same Day, and moved on.

I'm sorry??

They appeared to finish with rounds and I basically made them come back to me. The non-heart "doctor" said that it's normal for Chase's sats to sit in the low 70s. I said excuse me, but NO, it wasn't. He was always in the high 80s before then, so no, this is NOT normal for him. I made them send a Pediatric Cardiology fellow up to see us from one of the heart units.

Dr. Savage, the peds cardio fellow, explained things to me very well. He said we did want his sats between 75-85 without the oxygen, so we'd plan to wean him off and see if he can handle it. He said this was normal for heart babies following cath procedures. He put my mind at ease with the detail he provided at the time, most of which I cannot easily recall right now.

So after dinner I went back to the PICU to see Chase. As soon as I walked in to the PICU (around 7pm), Chase's nurse told me they had found a bed on 7C! This is great news, but I was completely unprepared to spend the night at the hospital with Chase. Of course I was going to do it, no question. But again I felt totally unprepared and helpless.

Chase was doing okay, but wasn't quite alert or awake yet. His sats were jumping as low as 59 and high as 92! I should point out that there are NO pediatric cardiologists or fellows on staff in the PICU. They are not a "heart unit" and don't have much experience with heart babies. I had asked my nurse a few questions that she had no answer for. She just didn't know. It just didn't sit well with me that he's in for observation following a heart cath procedure, but that those observing him had no experience with heart babies.

It was close to 11:30pm before we got to 7C and settled into his new room. We had a pretty lousy night. Chase was uncomfortable, even with morphine and 2 doses of Tylenol. Plus some Lasix to help him lose the extra fluid he had been on. He would cry the most pitiful cry (still hoarse from being intubated) every time I put him down. He would settle down only when I would hold him. Unfortunately his oxygen tubing couldn't reach the couch, so I had to spend the night hunched over in an uncomfortable chair holding him. I couldn't sleep because I was trying to keep him calm and happy. I didn't get any sleep. When he did "sleep," it was VERY light and uncomfortable. He would eat okay (no surprise) but still just seemed unhappy. We weaned his oxygen down to 1.5L and his sats were high 70s, low 80s when he was asleep. As soon he would wake, he would flip out and his sats would plummet. Basically that's how he was since the cath procedure: decent sats when asleep, bad sats when awake and fussy.

After a long night, Chase went down to the 6th floor around 7:30 AM to have an echo to see how things looked. When we returned to our room, we were told he would be getting a chest x-ray shortly (a short 2 hours later!). He did great for both tests and I was anxious to hear the results. I paced the room while the doctors began rounds at the other end of the unit. I was desperate for test results, but also, I had our Jeep at the hospital, meaning hubs and LO were stranded at the hotel until I could come get them. LO really wanted to get back to the atrium to play today. She so needed to get out of the hotel. All of this is so unfair to her and I absolutely hate there was nothing I could do about it.

After what seemed like hours (since it was almost 2 hours!), the doctors made it to our room. They stood outside the door (closed) and discussed Chase for a good 10 minutes or so before the whole gang came in the room. The doctor this morning, we'll call him Dr. Jerk (that's not really his name!), basically gave me an earful that I was NOT prepared for. He basically covered the following items:

• The cath procedure yesterday (ballooning his coarctation) apparently (according to Dr. Jerk) did NOTHING. His coarctation remained unchanged after this big, fat, stupid procedure! What?? Dr. Baker, the one who did the procedure, was very pleased with the SUCCESSFUL results of lowering his pressure from 10 to 0 and increasing his coarc from 4.3 to 6! How is it this guy is telling me none of this was true?! I told him what Dr. Baker told me and that Baker also said the echo results aren't as reliable as the cath lab results, but Jerk said I was comparing apples to oranges and basically said he was right and I (and Dr. Baker, therefore), were WRONG.
• Chase has a narrowing or small area in his pulmonary artery. I remember Dr. Baker telling me he saw this in the cath lab yesterday, but wasn't going to do anything to address it at that time. Dr. Jerk said this complication will need to be addressed surgically by patching the pulmonary artery to make it bigger, apparently a procedure that would grow with Chase and should be a one-time fix. This really disappointed me because when Chase has his Glenn surgery, the pulmonary artery would need to be patched, making the surgery that much more invasive and complicated. I know Dr. Bradley's good and all, but I just didn't want things to be any harder than they already were.
• To my surprise, Jerk also mentioned Chase's leaky tricuspid valve. WHAT?! This is the first I'd heard of him having a leaky valve!!? Dude just went on and said based on my reaction, he assumed I wasn't aware of the leaky valve. Um, NO! He said it may or may not be addressed during his Glenn, it would depend on what Dr. Bradley saw and whether or not the leak was mild, moderate or severe. I was holding back tears.
• Oh, and he also said our goal will be to "keep Chase comfortable" over the weekend as we try to keep his sats up. I'm sorry, but isn't that the absolutely worst way to say something like that? "Keep him comfortable?!" Really?
  

He finally left and I let it go. I was heartbroken, stunned, devastated. Truly, I felt like this doctor just told me my son has absolutely no chance of survival. Literally. That's how it came across. I balled my eyes out like never before! My sweet nurse was able to comfort me by telling me that really, the pulmonary artery issue is not at all uncommon and that Dr. Bradley is very conservative with those repairs and uses plenty of patches to make sure it's big enough to handle Chase's circulation. She also said it's common with hypoplastic babies to have a leaky tricuspid valve (the one separating the right atrium and right ventricle) simply because the right side of the heart is working so very hard. She went on to say that after his Glenn, when the shunt is removed, they would've had to make some fixes to the pulmonary artery anyway and that after his circulation change with this surgery, his leaky valve may not get any worse or be a big problem. This next surgery basically takes a load off the right side of the heart by using the pressure in the blood to move to the lungs without the support of the heart forcing it to the lungs.

My goodness. I left Chase in great hands with the nurse and headed to the car. I was crying like I hadn't cried since we first got Chase's HLHS diagnosis on June 16, 2009. All I wanted to do was fall into my husband's arms and cry like a baby. I needed to tell him what I had learned. I needed to have his support. And there were literally about 10 cars in the parking garage in the lane to exit. I couldn't believe this one time I needed to get out of there quickly and a zillion cars were in my way.

I finally made it out of the garage and decided I had to call hubs on my way so I could tell him the news without letting LO see her mommy breaking down into a puddle of tears. So I called him, and did my best to sound somewhat coherent as I told him everything through tears. I was a basket-case. He met me outside our room at the hotel and I dropped my bags and landed in his arms. We're in this together. I finally had someone on my side after leaving that horrible doctor and his Debbie Downer information sharing technique.

Hubs was sweet to go to the hospital to be with Chase and track down Dr. Jerk as well as get opinions of some other cardiologists here at MUSC while I got to stay at the hotel and take a nap while LO napped. It was a blessed hour of pure sleep! Yay! Afterward, I packed up my overnight bags, got LO ready and we headed back to the hospital. I was so surprised and happy to see my sweet little boy sitting in his bouncy seat, looking SO MUCH MORE like himself -- finally! He even gave me a huge smile when I came over to say hello. Right now I'd say he's about 70% back to his "old self" and I'm very happy for that!

So about his next surgery... It's looking very possible that it will be next Wednesday or Thursday. Monday and Tuesday are already slammed surgery days for Dr. Bradley, so Wednesday could be the earliest Chase will see the OR again. I've heard that Dr. Bradley has looked over Chase's situation at a very high level, and I will tell you that Chase's aspirin has been discontinued (meaning there's a STRONG possibility he'll have his surgery next week and he can't be on a blood thinner like aspirin the week before for obvious reasons). My hope is we'll get more information on Monday and hopefully we'll have a chance to sit down with Dr. Bradley and let HIM explain Chase's current state and what he feels will be necessary with his next surgery.

At this very moment, hubs' mom is flying into Charleston to be here to help us with LO while we work through the specifics with Chase's upcoming surgery. Lots of our family and friends have offered to help us and we are so truly grateful for that. Hubs and I need to work out a plan to get all the stuff we need from home brought down here to Charleston for us. We're also working on getting into the same rental house we used during Chase's first surgery. We'll probably also work on some additional childcare arrangements so poor hubs' mom isn't "stuck" with our girl all by herself for too long.

My baby is crying for me. Gotta go. I'll try to keep y'all updated as best I can as quickly as I can. Thank you so much for your support and continued prayers. This next week will be a BIG one in our lives and we are praying for Chase's safety and speedy recovery from all that lies ahead for him.

A Difficult Summary

High level: cath balloon apparently didn't fix coarctation yesterday (according to Dr. Jerk), his pulmonary artery is also small/narrow & apparently he's had a leaky mitral valve (news to us). Not leaving until he can get into the OR for the Glenn & to fix all the additional complications. Please pray like never before!!!!


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Update

Just finished talking with Dr. Baker. The cath procedure was a success! They ballooned te coarctation and it went from 4.3 (more on that later) to 6! His aorta is closer to 7.5 so the ballooned area is not as large as the rest of it but definitely better! The gradient went feom 10 to 0 which is great! I don't know that I really understand that so I'm sure you guys don't either. I'll try to explain more and better later. Right now I'm in th PICU waiting area waiting to see him. It should be about time now. More later...


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Cath Update #5

They ballooned the coarctation and took more measurements and pictures. I'm waitng to talk to Dr. Baker now. They are taking Chase to the PICU so he can ease off the ventilator to prevent a mishap like we had before. Praying everything's okay. Didn't get a lot of info via pager an am anxious to talk to Dr. Baker. Please pray! Will post update as soon as I can!


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Cath Update #4

11:00 AM - They are measuring now to see if they need to balloon (the coarctation).


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Cath Update #3

10:37 AM - The catheters are in and they are taking pictures and measurements.

Assuming all is well since they haven't told me otherwise.


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Cath Update #2

9:30 AM - The echo is done and they're putting the catheters in.

Cath Update #1

They just took him back for the cath procedure. They'll do an echo first (after they get him intubated and under anesthesia) so the actual cath procedure probably won't start for another 30 minutes to an hour.

Please be praying for my sweet boy!!!


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Change

Gracious! They say the only thing constant is change, right? Well, we had all our ducks in a row and all the plans in place for Chase's cath procedure, only to change it all up at the last minute.

My wonderful mom was going to keep LO Wednesday and Thursday and my awesome sister was gonna take over Thursday night til we get home Fridat afternoon. Due to a sequence of utter insanity, hubs and I made the VERY last-minute decision to being LO with us. This was pure madness on our part, but ultimately we're happy with our decision.

We had planned to leave at 3pm for Charleston. We made the decision around 2pm. I has already packed Chase's stuff and most of mine. I had already typed up instructions for LO's care providers, including an Emergency Medical Consent form signed by both hubs and I and a copy of her insurance card. Whew! Now I was scrambling to get clothes, shoes, toys, books, games, jackets, DVD player, DVDs, food and drinks for LO.

Then I realized: If I take Chase to MUSC at 6:15am tomorrow, how will hubs and LO get to the hospital if we only take one car?? Should we take two cars? Should take one car and rent one in Charleston? How much longer and harder would the 4 hour drive be if we had to stop to feed Chase when he's hungry? How would I manage two kids in the car alone on such a long drive?? Now I can't pump in the car and feed it to him in a bottle while hubs is driving! Argh. Hubs finally decides we're taking one car. Whew! He called the hotel and confirmed they have a van that could take hubs and LO to MUSC tomorrow morning, but that would mean lugging LO's convertible car seat all over the hospital all day! There's no way she would ride in the van without a car seat, even though the hotel is only a block or two away!

Then hubs had a moment of pure genius: he could put LO's car seat in the Jeep when he gets to MUSC since the Jeep will already be in the parking garage there from when I bring Chase over earlier tha morning!

Done deal.

So now we're about 30 minutes from Charleston and only stopped ONCE for a potty break and to feed Chase. What a miracle! As I type this, BOTH kids are asleep in the back seat.

Dear, sweet silence. How I've missed you!

Tonight and tomorrow will be crazy and hectic but I know we'll survive. Here's what the next two days looks like for us, although I'm sure there's many things that will happen that I don't know about yet!

7:30pm - arrive at the hotel, check in, unpack, figure out how/when/where to eat a quick dinner

9pm - EVERYONE in bed (I hope!)

11:30pm - wake Chase up to eat and cram him full of food as best as I can

3am - wake Chase up again and give him some Pedialyte since he's allowed to have some in hopes of keeping him happy til he can eat again in several hours

5am - mommy gets up (again!) and gets Chase up and ready to go

6:15am - mommy and Chase go to Admissions at MUSC for his procedure. We then go wherever they tell us and do whatever they say (get Chase's weight, o2 sat, BPs, etc.).

8am - The cath procedure begins around this time. Could be sooner or later. I'll get hourly updates that I'll post on my blog, Twitter and Facebook

10am - at some point, hubs and LO will take the hotel van to MUSC and join me in the waiting area

12pm - Chase should be back in his observation room. Hubs and I can see him, but LO isn't allowed in for 2 hours while hw recovers. We hope to get lots of good information from the cath and pray that Chase does SUPER-AWESOME!

3pm - at some point Chase will be taken to 7C for observation overnight. LO and hubs will go back to the hotel for naps while mommy stays with my boy

6pm - hubs and LO come back to visit with mommy and Chase.

8pm - hubs and LO back to the hotel for the night while mommy stays with Chase.

11am - my goal/hope/dream/wish/prayer is that Chase is discharged by 11am on Friday. We shall see!

6pm - we hope to be back home! Keep us in your prayers!!!


R-e-a-l-l-y Long Post Posted from my iPhone

A Special Message from Chase...

He's ready for his big day tomorrow! Now if only his mommy was, too...

Apologies

Sorry for all the craziness with my blog layout and template today. I want something new and different so I've been tinkering with the template a bit. Unfortunately, it changed my layout and I can't drag and drop my page elements where I want them. It's weird. It should work, but it doesn't. So please ignore all the random changes and lousy layout you see right now. I'll try to make it all better soon, but as you probably realize, I've got a lot going on the next few days and might not have a chance to get to it.

Sorry!

More Cath Info

I spoke with Dr. Baker this morning. He's the one that will be performing Chase's cath procedure on Thursday. I emailed him a list of questions yesterday and he thought it would be easier to discuss over the phone. So, I learned a bit more info about the procedure and thought I'd share it with you.

First of all, he said Chase will be under general anesthesia. He says that's what he does for almost all of his cath procedures. He did say that the anesthesiologist would be Dr. Walton (the same one who was on during the bronchoscopy nightmare) or a member of his team. They would all most definitely discuss what happened and take the necessary precautions to prevent it from happening again.

Dr. Baker is about 90% sure he will balloon Chase's coarctation during the cath procedure. This is what will require Chase to stay overnight for observation. There are a lot of risks to this but he says the benefits outweigh the risks. There is a chance the coarctation will narrow again following the procedure (he didn't specify... days? weeks? months?) and will need to be ballooned again. This may need to happen several times over the next several months. Not feelin' great about that! He did say usually within 6 to 12 months the ballooning fixes the narrowing and it is no longer an issue.

His best guess is that, assuming the balloon procedure corrects the coarctation (even if only temporarily), Chase will probably have his next surgery in about a month (the end of March). We won't know anything for sure until after the cath procedure on Thursday.

Please keep all of us in your prayers -- especially Chase as he goes through one of what will be several "ordeals" in his sweet little life. Pray for safe travel and for hubs and I to handle things as best as we can. Pray for the doctors to make the right decisions. Also pray for LO, who will be staying at home with my mom and my wonderful sister while we are at MUSC.

Slight Change in Plans

Ugh. It's so frustrating to have a plan in place only to have to make changes to it! I called the cath lab at MUSC this morning to get some answers to some questions hubs and I have about the procedure. I'm glad I called, but I'm very irritated to find out that although the information we received Friday indicated Chase would only have a sedative for the procedure, the schedule apparently says he'll be under general anesthesia. This is NOT at all what I wanted to hear! We had a horrible experience when he was under general anesthesia for a bronchoscopy at MUSC when he was 16 days old that resulted in CPR and chest compressions! I had a certain level of peace knowing he would get a sedative instead of general anesthesia. Now that's changed.

Also, I guess you just have to know what questions to ask and how to ask them. I also found out that IF they need to balloon or stent his coarctation (which I'm about 99% certain they will), he will be required to stay overnight at MUSC Thursday night. This obviously changes our plans significantly! We had expected to return home Thursday evening and now it will be Friday so we'll need to modify LO's childcare plans, figure out if we'll need a hotel room or if we'll be able to stay with Chase in his hospital room, etc.

I'm glad I called.

I have to say the ONE thing hubs and I have been most disappointed with MUSC about is COMMUNICATION. It's the easiest thing to do and yet it never seems to happen when it's most needed!

Heart Cath Info

Late last Friday, we received some additional information from MUSC regarding Chase's cath procedure, which as you know as been rescheduled for this Thursday, Feb. 25th. I figured some of you may not know what exactly a heart cath is or why it's done, so I thought I'd share some of the information we received from MUSC.

The purpose of this test is to determine the details and severity of the heart condition your child has, which will help us decide what kind of treatment would be most beneficial. Heart catheterization is done by inserting a long, narrow, hollow tube called a catheter into an artery and a vein, usually in the thigh near the groin and passing the catheter up the blood vessel into the heart. Movement of the catheter up the blood vessels and inside the heart is observed on x-ray. Once the catheter has reached the heart chambers or main blood vessels, pressures are measured and samples of blood are withdrawn through it for oxygen measurement. This is followed by the injection of iodine-containing x-ray dye so that movies may be taken of the heart and vessels. Electrical recording and stimulation of the heart may be performed using different catheters if there is a known or suspected problem with the heart rate or rhythm. In some cases, catheter treatment with balloon dilation of narrow valves, stenting of narrowed blood vessels, closure of abnormal holes or vessels or treatment of electrical abnormalities will be done. If there are any interventions or other tests, it will be performed at that time.

The detailed and exact diagnosis of the heart condition will make future treatment safer and more effective. When heart catheterizations are done, there is a chance that complications can develop; but the chance of a complication is related to the severity of the heart defect and complexity of the procedure.

A sedative will be given prior to the test and most patients sleep through the test, which will take about three hours. Local anesthesia with a novocaine-like drug is used so that patients experience only minimal discomfort during the procedure.

So that's a snapshot of what we have to look forward to on Thursday. Thankfully, God has ordained this procedure at this time and has worked out every detail on our behalf. My mom is available to keep LO for us so hubs and I can take Chase to Charleston and focus on him. Praise the Lord!

Please continue to keep us in your prayers, especially Chase. He won't be able to eat after midnight so he'll have to go 10-12 hours (at least!) without eating. And that's assuming we don't get "bumped" to a later appointment time (I hear that unfortunately happens often). Chase is my little Rock Star and I know he'll handle everything amazingly (probably much better than his mommy!).

We know God already knows what lies ahead later this week as well as in the months and years ahead, so I'm doing my best not to stress out or worry. I know whatever they find on Thursday, Chase's medical team at MUSC will make the necessary decisions regarding his next surgery and do whatever is in his best interest. Please pray for the medical team, the doctor performing the cath procedure (Dr. Baker), his staff and everyone who will be working with Chase. We covet the prayers of our family and friends (and blog readers, too!) and realize we wouldn't be able to make it through all of this without those prayers!

Thank you in advance for following our journey, praying for our sweet boy and providing much-needed encouragement along the way.

New Cath Date

Chase had his cardiology appointment this morning with Dr. Horne. At his last appointment 2 weeks ago, we were told he had a coarctation (narrowing) in his aorta. We were hoping for good news this morning, meaning the narrowing hasn't gotten any worse. Unfortunately, that isn't the case.

He was originally scheduled for his first heart cath on March 29th. However, his echo this morning showed the coarctation is now measuring 3 mm (it was 4.3 mm 2 weeks ago). His blood pressures indicated the same findings as the echo, as they were lower than before. Thankfully his pulses are still very good, which means his blood is still moving throughout his body just fine.

Based on the findings this morning, Dr. Horne didn't want to wait until March 29th for his heart cath. Instead, they told me it would be March 1st. After we came home from the appointment, I got a call from the cath lab at MUSC telling me his cath has been moved to this Thursday, February 25th! I have SO begun freaking out big time. I'm already scared and nervous for the cath lab procedure since he'll be under anesthesia, but I'm also worried about the coarctation. At his last appointment, Dr. Horne said a balloon procedure to widen the narrow section (during the cath procedure) would probably not work because he felt that it would just return back to its current size. What this tells me, although we'll know MUCH more after next Thursday, is that Chase is most likely going to have his next surgery, the Bi-Directional Glenn, VERY soon... most likely within the next 3 or 4 weeks. They'll need to surgically address the coarctation and that will happen during the Glenn. So, assuming Chase's lung pressures give him the "go ahead" for the Glenn, I'm thinking it's possible we'll do the surgery the week of March 1st. This is just my best guess -- obviously I don't have a medical degree.

This is how I'm looking at this (VERY SCARY) situation: Typically, heart babies have a very difficult time gaining weight, so they usually like to schedule the Glenn around 6 months of age to give the baby plenty of time to grow, put on weight and allow their lungs to develop. Chase is a big boy. He weighs about 14 lbs. and is almost 4 months old. He's VERY good at eating. He's growing. He's thriving. He's putting on weight like nobody's business! This is all very good, except it means that he could outgrow the BT Shunt that was placed during his first heart surgery. SO... (I hope you're able to follow my random train of thought) If we had waited until the end of March for his cath, there's a good chance my big boy could've had a problem with outgrowing his shunt. Perhaps this aorta issue is God's way of having us take care of his next heart surgery sooner than later to prevent possible problems. Seriously, I don't know if any of that makes sense or if it's even overly accurate from a medical perspective, but this is just one sweet little heart baby's mama sharing her thoughts and feelings about her baby boy.

I'm curious and very anxious to hear from other heart moms who have gone through the Glenn earlier than expected. I'm so scared but my hope is in the Lord! He has a perfect plan for my sweet Chase's life and I am fully committed to Him and His will.

Please pray for Chase as we prepare to head back to MUSC for another procedure and very possibly, another surgery. We'll need to work out housing and childcare and all kinds of fun stuff like we did for our previous stay in Charleston, but we've got less than a week versus 18 weeks like last time! Please pray for all the pieces to fall into place and for God to keep His hand of protection around our baby boy. And pray for me. Have I mentioned I'm scared? I hate the uncertainty of what lies ahead, but I know Who sees our future and I'm trusting in Him.

Chase Says Hi! (sort of)

Something the Lord Made

Hubs and I watched a movie over the weekend that I can't help but discuss here. The movie is called "Something the Lord Made." It tells the true story of Dr. Alfred Blalock who, together with his assistant Vivan Thomas and Dr. Helen Taussig, created a life-saving surgical solution for "Blue Baby Syndrome" -- also known as Tetraology of Fallot. These pioneers opened the field of heart surgery, creating the BT Shunt (Blalock-Taussig Shunt), a variation of which is in my son's chest, keeping him alive today.

Whether or not you have a close connection to the "heart community" I think you will enjoy this movie. It is fantastic. Plain and simple. And it was obviously very inspiring to hubs and I since it deals with the onset of heart surgery. I found the movie very informative as the challenges of developing surgical techniques on the heart were met head-on with Dr. Blalock's determination and Vivian Thomas' vast skills and creativity.

Do yourself a favor and see this movie. It's well worth your time!

Just Another Update...

Well, first of all, Happy Valentine's Day! Our little family celebrated in a weird sort of way this year. We decided we weren't going to "officially" celebrate (read: no cards, flowers, chocolates, romantic dinner, etc.) and decided to mainly do stuff for the kids. I sort of broke protocol by ordering myself a beautiful necklace from Blue Nile (my FAV!) and let my husband give it to me for Valentine's Day. ;) He cheated as well by giving me a gold Godiva box filled with 8 of my favorite truffles: Dark Chocolate Raspberry! YUM! Yesterday we let LO open one of her Valentine's Day gifts a few days early... Hungry, Hungry Hippos! We figured since we got a very rare day of snow and were stuck inside (ha! like every other day of our week!), we should make the most of it and play a fun game. Then today I bought this gem at Target for Chase and let him break it in a day early. I'll post pics of the early gift fun for the kids tomorrow.

On another note, I realized I didn't give an update regarding Chase's echo last Friday. I already mentioned that Dr. Horne found a narrow section in his aorta. Well, he went back and looked at his previous 2 echos (December and January) and it turns out the narrow section was there on both of his previous echos. This raised some concerns for hubs and I. Why wasn't it noticed before? We'll have another echo next Friday and my guess is it will still be there, and hopefully not any more narrow than it was in the previous echos. I'm still a bit frustrated that we were completely blindsided last week by this additional complication. It will be addressed during Chase's next surgery, but I so hate the idea of having MORE stuff done. Ugh.

Guess that's it for now. I'm tired. And I wish I had some ice cream.

((random))

What's Going On?

It's been several days since my last post (again). I'm so sorry! Honestly, we had an "incident" with Chase here at home last Monday (10 days ago) that I'm not going to discuss on the blog. Chase is perfectly fine, so don't worry! But there's been some stuff going on that's related to Monday's incident so I haven't been able to discuss it freely out here since I'm choosing not to share the details behind what happened. But I got to thinking today that there's no reason I can't share stuff with Chase that appears to be unrelated to the incident from last week.

So over the weekend and into the start of this week, Chase was not acting like himself at all. Of course hubs and I assumed it could be related to last week's incident, but we're pretty sure it's not. So Chase was acting very fussy, wasn't sleeping at all during the day, wouldn't eat from a bottle very well and was just a moody version of his normal self. This was obviously so unlike him so when he was still acting this way on Monday, hubs and I decided to take him to the pediatrician for a quick look.

I explained the behavior changes we had been seeing with Chase to the doctor and she said it sounded like he's having bouts of reflux! Wow! Hubs and I hadn't expected that! Basically she was thinking that he was extremely uncomfortable with his feeds due to the excessive irritation and pain in his throat from the reflux. It made sense. He would always turn his head all the way to the left when taking a bottle, and even then, he would still get upset (in pain?) and somewhat choke on it.

So what was her suggested plan of action??

GO BACK ON THICKENED FEEDS.

Yes. I couldn't believe she said it. Back to thickened feeds. Back to pumping all the time. Back to NO nursing my baby boy.

She also suggested we restart the Reglan. We were told by MUSC to discontinue Reglan after Chase had been on thin liquids for 2 weeks. We had phased it out completely about a week ago.

Oh, and she also said we should increase his Zantac to 3x per day instead of 2x per day like we had been doing. I asked her if the dose should remain the same or not. Basically, we were told 0.3 mL of Zantac 2x/day when we were discharged from MUSC when Chase was about 9 lbs. Now he's 13 lbs. It made sense to me that the dosage should increase accordingly. She did some quick math and determined I was correct -- his dosage should be 0.9 mL 3x/day! What a huge increase! I'm glad I asked!

Anyway, hubs and I discussed all of this and, as usual, we decided to make our own decisions regarding Chase's care. It made sense to up his Zantac, but we weren't sure 0.9 mL was right, especially since the prescription was written by a doctor at MUSC and not his pediatrician. We wanted to go over all of the pediatrician's recommendations with the MUSC doctor who cared for Chase (I've left messages and still haven't had a call back! Ugh!). So in the meantime, we decided to go to 0.6 mL of Zantac 3x/day. We also weren't too keen on restarting the Reglan, and thought it would be best to change the Zantac dose, wait a few days to see how he responds, then start the Reglan again later if it seems he needs it.

And the thickened feeds?

No thank you.

Basically, when I nurse Chase, he does just fine! He eats well and doesn't have any major problems with fussiness or reflux. It's only when I give him a bottle. Well, actually, when I give him a bottle of breastmilk, he takes it fine, too! Hubs and I continued our discussion until we got to this point: It's only when we give him a bottle of (the NASTY) Alimentum hypoallergenic formula that Chase shows signs of fussiness, pain, reflux, irritation, etc.

What?!

Is it truly as simple as ditching the nasty formula?

I'm hoping so. But in the meantime, we're going to keep the 0.6 mL Zantac dosage 3x/day and keep him off the Alimentum formula. I'd be more likely to give him regular formula and see if it causes blood in his stool (milk allergy not confirmed in my opinion) than make him suffer with that nasty stuff. Anyway, by Monday evening, Chase had returned to his normal "happy baby" self that we know and love! So we'll see what the MUSC doc says if/when she returns my call, but for now, I think we're doing what's best for Chase and that's really all that matters to me!

On a LO-related note... We officially registered her for 5-day preschool starting this Fall! It's only from 8:30 AM until 12:00 PM but for FIVE DAYS a week! Obviously I'm excited that the house will be a bit quieter during those hours and I'll have more one-on-one time with Chase, but I'm so completely excited for LO to start "school!" I've loved staying home with her but I've always hated that she hasn't had any opportunities to socialize with other little kiddos, make friends and learn new skills. We had thought about the 3-day program, but I like the consistency and routine of her going Monday through Friday. I can't wait!! She's going to LOVE it!!!

Cardiology Appointment

Chase had his bi-weekly cardiology appointment this morning at 9:30 AM. I always expect his appointments to take a while (hours) and this morning was no exception. It was about 3 hours! Here's how it went:

• His o2 saturation was 88. That's really great! Dr. Horne mentioned he didn't want it to be much higher than that because it would mean too much blood is going to his lungs. His o2 saturation will trend downward as he gets closer to needing his next surgery.
• His blood pressures were great! They check blood pressure on both arms and both legs and all of them looked super!
• His pulses were great as well. Dr. Horne checks his pulse in both is wrists and groin and was very pleased!
• His weight was up to 13 lbs., 3 oz.!!! He was wearing a diaper but I'm guessing he's right close or right at 13 lbs. My big boy!!
• His length was up to 24.2 inches! He sure is getting long!
• We went back for an echo next. I though it was funny that the tech came in and asked me if Chase takes a bottle. It was a strange question and a bit out of context. I said yes. Apparently she was expecting me to feed him a bottle during the echocardiogram?? I told her he just ate before we left the house and she looked disappointed and asked if he had a paci. I said yes. It was weird. I've never been asked/told to feed him during the echo before!? Not surprisingly, he did fantastic. He slept through the majority of it, but did wake up and fuss while she was trying to images from the top of his chest (near his neck). Since he freaked out a bit, she went on and got images from near his stomach and never went back up near his neck. We finished up and went back to the room.
• We waited in the room for a good 20 minutes and still no Dr. Horne. Chase was hungry so (as much as I hate to do this in "public") I went ahead and was nursing him in the tiny room. Oddly enough, the echo tech stopped by a few minutes later and informed me we needed to repeat the echo to get some images of the top of his heart (the part he flipped out at earlier and she never went back to). So, I asked her to give us a few minutes so I could finish nursing him; otherwise, he'd never sit still through the echo a second time. The echo only took about 5 minutes and Chase cooperated very well!
  
• Back to our little exam room. Dr. Horne came in and we had a nice chat. He was very happy with Chase's blood pressures and pulses. He left the room for a second and said something about getting a heart diagram. I was a bit concerned because this made me think he needed to describe a problem with Chase's heart and needed a visual aid. Sure enough, he found something not awesome on the echo. Apparently Chase's descending aorta has a narrowing that he hadn't seen before. The section measured 4.3 mm across, where it should be between 6-7 mm. At this point, he wasn't concerned, but said that we'd repeat an echo at our next appointment in 2 weeks (usually we only do an echo every other visit, or once a month). Obviously I am concerned/worried because this is not what we expected and not what we wanted to see. Dr. Horne plans to go back and review Chase's previous echos (the ones done at MUSC and at Dr. Horne's office) to see if his aorta has slowly narrowed over the past few months, or if has always been that way and they never noticed it or had a good picture of it, etc. He said the section could be "ballooned" or expanded during Chase's heart cath in March but he didn't think it would do any good and that it would just return to being narrow. Ultimately, this appears to be an additional item they'll need to address during his Glenn surgery (probably in April). If the narrow area continues to get more narrow over the next few weeks, Dr. Horne will move up our cath date and possibly move up his next surgery to be sooner rather than later. All of this doesn't give me a warm & fuzzy feeling, but ultimately I know it's good that we found it now and will be watching it closely.
• Other than the coarctation of his aorta, everything looked great. When I asked Dr. Horne how he felt about how Chase was doing at his last appointment, he said he was "thrilled." Today, we were downgraded to "very happy." I'm okay with this and will keep telling myself that over and over again every single day until if/when I truly am okay with it!

So please keep Chase in your prayers over the next several weeks. Dr. Horne said it is possible that his aorta will grow so that it isn't narrow anymore in that one section, so I'm going to be praying for that to be the case!

Just Chase

Here's a clip of Chase from just a few minutes ago. I guess this is mostly for my family's benefit (both near and far!) since they don't get to see my boy and his total absolute cuteness in person! I truly hate that my friends and family will only get to know Chase in his early months through this blog, photos, texts, etc. But anyway, here's about 4 minutes of Chase just being Chase! I wanted to make him laugh by tickling him but I hate the sound of me on these recordings... I think it distracts from him too much.

Enjoy!

Overboard

It's officially been 9 days since the start of potty training, and, I'm sure you've heard (read) me mention it several times, but LO has done a fantastic job! She's been accident-free for 7 straight days! I think she's got this potty training thing in the bag. So each time she goes potty, she gets a candy (M&Ms, Reese's Pieces, Hershey's Kisses -- whatever we have lying around leftover from recent holidays) AND she also gets a sticker. I don't know what I was thinking offering BOTH candy and stickers with each successful potty trip. Obviously I figured in the beginning that she'd need some good motivation to get things going, and I'm realizing now I went a tad bit overboard. This is evidenced by the massive amount of stickers All. Over. The. House. It's crazy where I keep finding these durn stickers! My pants. The couch. Her beanbag. Her clothes. Her stomach. Our bed. Her bed. The swing. The bouncy seat. The ottoman. The coffee table. The bookshelf. The TV. The entertainment center. A saute pan in the cupboard. These stickers are literally everywhere! And we learned (the hard way) that these stickers don't peel off the hardwood floors very well. There are little white splotches of sticker remains all over the hardwood floors. Sheesh! So I've decided to do away with the stickers as a potty reward. And I figure if she puts up a big stink I'll just double the candy. That should go over just fine!

So other than sticker madness, things here at home are the same as usual. Chase is doing really great! He has an appointment tomorrow morning with his pediatric cardiologist, and this visit will include an echo. It gives me such peace of mind to see him every other week and have a monthly echo. My biggest fear is the biggest risk for Chase between now and his next surgery: his shunt becoming occluded. It helps that his shunt is checked monthly and so far it has been clear. Once he has his second surgery, this will no longer be a risk as the shunt is removed. Chase has been putting on weight (he's almost 13 pounds!) and eating great. I still feel like he's not getting enough breastmilk from me because after I feed him, I'll offer him 2 ounces of milk in a bottle and he'll take it like he hasn't eaten in days! I don't know why but supplementing him makes me feel like a complete failure! I've been pumping for 20 minutes after all of his feeds for almost a week and haven't seen any significant increase. It kills me to know that I've exhausted all my options and have done everything under the sun that I could do to increase my supply. I just don't want to give up completely. I nursed LO 'til she was 7 months old (finally had to give up due to supply issues with her, too), and was hoping to nurse Chase just as long if not longer. My biggest goal is to get him through his next surgery. Breastmilk is just so much better for him, especially when he's recovering from another heart surgery! ((sigh))

On a random note, I'm a bit torn when it comes to blogging these days. See, you all know we're stuck in a bubble here at home. There's only so much "exciting" that can happen in this sort of environment. So basically, there's not much to blog about. But at the same time, I hate not updating the blog for several days in a row. But I don't want to post about boring ol' stay-at-home mom type stuff. So what do you think? Keep posting about whatever? Or let several days (or weeks) go by in between posts?

Happy Monday!

It's been a quiet weekend here. We had a few days of a lovely ice/sleet mix... unfortunately (for LO's sake) there was no snow to play in. Oh, well. It's only February so I'm sure we'll see at least one little snowstorm move through our area before spring arrives.

So let's see... LO's potty training? A-MAZING! We started last Tuesday on a whim, just for the heck of it, to see how she'd do. A few accidents her first day, one accident on day 2 and she's been accident-free since! She's using the potty all by herself -- we don't have to remind her or force her to go every 30 minutes or anything like that. We bought a cute Dora potty seat to put on the "big" potty but it moved around and didn't seem safe, so we bought a BabyBjorn Toilet Trainer and it fits perfectly. She's started using the big potty already. And she does it ALL by herself (except #2 wiping... I know, TMI!). I'm still completely shocked this was so easy. She wakes up dry in the mornings and after nap times, but I'm still putting her in a pull-up just in case. I'm just so very proud of my sweet LO. Everybody said girls are easy to potty train, but MY GOODNESS! I never expected it would be THIS easy! Yay, LO!!!!

Chase is doing fantastic, as usual (Praise the Lord!). His only real "struggle" these days is pooping. Seems like he'll only do it every other day (sometimes every 2 days) and it's a big production with a lot of straining for him. Hubs and I will put some Karo syrup in his bottle to help with the process sometimes. I hate that my sweet heart baby has to struggle so much with this. My guess is that it's due in part to the fact that we had been supplementing him a bit with the (nasty-smelling and tasting) Alimentum formula. I know breast milk is so much easier for babies to digest, so my only guess is the formula is slowing him down. Thankfully we haven't had to supplement with formula the past few days, so hopefully that will help. I'm still struggling a bit keeping up my supply to meet his demand. I've started pumping for 20 minutes after EVERY. FEEDING. in the hope that it will send the message to my body to make more. I figure I'll keep this up for a week or so and see if there's any improvement. This is the biggest struggle for me. I don't want to give up but I also want to supply 100% of his milk! It's crazy the amount of self-worth I find (or don't find) in being able to provide for my baby.

My boy is getting so much more alert and active. It's so much fun to tickle him and make him laugh! His smile is absolutely captivating! We've been spending some time on his tummy, which he doesn't love but is totally necessary. His head control is getting extremely good, too!

We have been keeping Chase in a pack n' play in our bedroom since we came home from Charleston. I think we kept LO in there until she was 6 months old before we finally moved her to her nursery. With Chase, I'm thinking we'll keep him with us until a month or so after his Glenn surgery (probably scheduled some time in April). So I decided the other day it just wasn't fair to make the poor boy sleep in a pack n' play when he could be sleeping in his fantastic, comfortable crib! Last night hubs went ahead and moved the crib into our bedroom, so Chase spent his first night sleeping in his very own bed! We were nervous if he'd sleep well or not, but he did a great job (of course!)! Now he gets to stare at his adorable Jungle Tales bedding and use all of the adorable mobiles and crib toys we couldn't use in the pack n' play. It's such a real blessing to be able to finally use that crib and bedding. If you recall, we bought it all before we got his HLHS diagnosis and honestly, I wasn't comfortable setting up the crib before we went to Charleston for Chase's birth and surgery. I was so apprehensive and nervous about whether or not we'd be bringing our baby home. Well Praise the Lord for His plans for our sweet baby boy! We know how complex and serious this diagnosis is and we know without a doubt how very blessed we are to have an otherwise healthy and thriving baby boy! God is so good and we are so humbled and thankful for His grace and mercy!

Here are some recent pics and a video of the kids for your viewing pleasure! :)

Don't ask me why, but for some reason, LO absolutely loves the boppy pillow. I dug it out of her closet to use it with Chase the other day, but I can't get my hands on it these days 'cause she's doing something with it. I'm not sure the benefit of sitting on the boppy on top of the beanbag, but it makes her happy. :)

Here she is sporting some straw glasses her Aunt D bought for her. We haven't let her actually try the straw part yet, but she seems to be enjoying the glasses as-is.

Again with the boppy. This time as a sombrero. Crazy girl.

Guess who's holding his own bottle already? LOL!

And finally, here's a little clip of Chase. Hubs was trying to get him to laugh and I was trying to record it. Of course our little guy is just way too observant and caught a glimpse of the camera. He's so silly!