October 31, 2011

Day 20 Updated

(Sorry about the lack of paragraph breaks and sideways pictures...blogger doesn't like my iPad, so it keeps screwing it up. I'll fix it soon!)
Monday morning, Travis and I dragged ourselves out of bed at 5AM so that we could be at the hospital with Sam before he was wheeled away for surgery. When we arrived, he was sleeping, but you could tell he'd been upset recently. He doesn't like having to fast those last few hours before surgery! I can't blame him.

We spent some time with him while they prepped his little crib for moving and then we followed him down to the 5th floor where the operating rooms are located. He woke up while we were talking to the anaethesiology team, but he didn't cry or stay too fussy. It's like he knows I need to see him not in distress before he has to be taken away. Again, the team taking care of him did an excellent job reassuring us and promising to take good care of him.

After they took him to get started, Travis and I headed to the waiting room. Even though we had access to our things in the ICU, we decided to stay in the lounge and stretch out on their sofas. Since we were more familiar with how the day would precede, we were able to relax a lot more than we had during the previous surgery. We watched the Today Show and played Monopoly on the iPad. The hours seemed to fly by and before we could even get too antsy, they were telling us that the surgery was completed and that we would be allowed back upstairs soon. As we stood in the elevator lobby, Travis commented about how it had felt like we'd just been on a date. In fact, those 4 hours sitting in the waiting room were the longest amount of time we'd spent together (while conscious, at least) since this whole ordeal began. Silver linings.

It was hard to see Samuel intubated again, but it was so nice to not see his external pacing wires and pacemaker box lying in his bed. His screen was back to monitoring a zillion different things, but this time, I knew what each number represented. Travis and I left for lunch for about an hour and took advantage of the time he was still intubated. By the time we returned, he was waking up and they were getting ready to remove his tube. I absolutely hate watching that whole process, but he handled it like a pro.

This recovery is radically different from his AVSD repair. We lost the breathing tube within hours of being in the room, instead of days. He got rid of his catheter, his big oxygen monitor sticker, his central line, and one of his IVs shortly thereafter. He was able to eat that afternoon, and was only on the high flow oxygen for a little while. It almost started to make me nervous since the pace was so much quicker, but I just had to keep reminding myself that he didn't need all that stuff anymore. He was getting better. His incision site looks good, and his little chest is free of all the extra wires that were in place for the temporary pacemaker. It's nice to see. You can barely tell that he has anything extra in him, but his tummy is a little harder on one side than the other and you can feel the outline of the pacemaker with your fingers. As he gets older and bigger, it will be even less noticeable. His pacemaker could last anywhere from 7-9 years, but it all depends on how much he has to use it.

They are working on managing his pain levels and continuing to give him some medications through IV. He has a few monitoring IVs in that will probably be coming out overnight. If he handles everything through the night, we may be leaving the CV ICU unit tomorrow, or they may keep us in here until he is discharged. Either way...we are many steps closer to ending this hospital stay. I can't wait.

I switched off with Travis during the late afternoon so that I could take Luke trick-or-treating. He was confused at first about how the whole thing worked. He would have much preferred to stop and eat each piece as it was given to him instead of waiting until after he collected it all. But he finally got the hang of it and we had a good time. He hadn't had much candy prior to this, but he is definitely a fan. You could see the chocolate craze enter his eyes after his first Hersey bar. He was not at all interested in sharing the chocolate with me or Grandma, but he was pretty generous with the Skittles. He, of course, wanted to eat the whole lot before bed, but didn't fight me too hard when I cut him off. However, I doubt this will last. He is such a Houdini that we may have to put his stash under lock and key.

October 30, 2011

Day 19

Day 19

Still waiting...

Samuel has had a pretty good day. The change in his formula and turning his temporary pacemaker back on has really seemed to make a difference in his temperamant. He's back to being our smiley baby again. He has wrapped quite a few nurses around his little fingers and he's got quite the set up now. They brought in a mobile to hang over his bed and he is in love. He'll get so engrossed in it that his pacifier will just drop right out of his mouth and he'll keep his mouth open like it's still in there. (I already found a replacement on Amazon so that he won't miss the hospital one. Whatever it takes, man. This baby cannot be spoiled enough at this point.)

We are heading back into the OR at 6 tomorrow morning. If all goes according to plan, this surgery should be over before most of you have been properly caffeinated, so I won't be posting hourly updates. I'll make sure to hit the highlights though. We'll be getting a crash course in pacemakers tomorrow from the representative after the surgery, so we'll learn all about our little Energizer bunny baby. I'm curious as to how they pace him long term and what the settings will be like.

Don't you feel like we have enough on our plate to research and become mini-experts on? I sure do. I am beginning to think I need to start delegating areas to different people. I'm not sure any one brain can take on all the different facets of pediatric cardiology, plus keep up to date with the Down Syndrome research world. Any volunteers to become the pacemaker specialist in our lives? We'll get you a pager and an official name badge.

This afternoon, while Samuel took a nap, I escaped from the hospital a few hours earlier than normal so that I could attend part of the Oktoberfest at our church. They turned our annual event into a fundraiser for Samuel. It was overwhelming to see our church family love us in such a tangible way. Beyond the Sunday we baptized Samuel, I have been out of church since the week he was born. I have missed being in that place and being with those people. It is just another thing I am looking forward to doing when our life calms back down. (Although, I know from my friends who are also pastor's wives, that it will be many years before sitting in church with my boys will be an enjoyable, worshipful experience!)

So many people today, and in the comments and emails I have received these past weeks, have commented on how well we are handling this. They keep saying how they have no idea how they could do what we are doing...that they wouldn't be able to handle it. That we are inspiring.

But you know what? If it were your kid laying in that sad little hospital crib instead of mine, I would be wondering the same thing. I didn't know it was possible to go through something like this and be able to keep going day after day. I didn't know it was possible to spend 8 hours at your son's bedside, changing diapers and avoiding wires and staring at monitors...and then drive home to play with your toddler and help fill up his little love tank. Add to the mix only seeing your spouse as you tag in and out of the hospital, and it seems impossible that we are going on Day 20 and we are still standing.

But we are. We are standing. And we are getting things done. We are remembering to eat and shower and take the trash cans out on Tuesdays.

But it has nothing to do with us being special. Or strong. Or brave.

We've had amazing support from both our mothers, who have done all the heavy lifting of keeping our household up and running these past 3 weeks. We've had countless people surrounding us in prayer, day and night, all over this country and the world. We've had a church family that has fed us and sustained us, that has understood Travis' need to be away, and that has raised money to help cover the unexpected financial burden we were facing.

And, most importantly, we have a God who loves us. A God who is holding us up when it just doesn't seem possible to keep this schedule anymore. A God who watches over our baby, and the myriad of people who have been charged with his care these past weeks. A God who has been holding our hands in that hospital room every time the monitor has done something scary. A God whose heart I imagine hurts just as much, if not more than my own, at seeing his little child go through so much. A God who knows what each day will hold for us, and a God who continues to be faithful, even when we are not.

That is how we are surviving. It has nothing to do with us at all.

October 29, 2011

Day 17 & 18

Yesterday, Samuel remained in the 2 to1 heart block for most of the day. He had like a 30 minute period when he went into sinus during the afternoon, but it didn't last, nor did it change the decision the doctors have finally come to: Samuel needs a pacemaker.

After waiting it out for over 2 weeks, they've come to the conclusion that his heart isn't going to resolve this issue quickly, if ever. So, bright and early Monday, Samuel will go back into the operating room for the 2nd time this month for the pacemaker surgery. It may end up being a back up pacemaker or one that he doesn't need permanently, but it's hard to say anything definitively at this point. We know his heart is capable of a good sinus rhythm, but for whatever reason, it's just not reliable enough to get us out of the hospital in a predictable amount of time.

It was hard for me to hear that he's back on the surgery schedule. In so many ways, it feels like a giant step back. He was recovering well from his first surgery. His scar is almost totally healed and looks so good. I hate that they have to go open it back up. He was even able to begin physical therapy yesterday, which made me feel like we were finally getting back on track with things. (BTW, the physical therapist said that the low tone that all babies with DS have isn't very severe in his arms and legs, which was encouraging to hear. We will, of course, have to work on his trunk and head. But it was nice to get some good news for our future.) I don't feel like he is so fragile anymore. So, the idea of seeing him intubated and out of his crib again just makes my heart hurt.

I have to keep reminding myself that he is not going back for the same surgery. This is a different one. It's not nearly invasive. They won't have to crack his sternum again. He won't have to be on bypass. It will only take 2 hours, not 5. He will have to be intubated again, and they will reopen his incision site, plus make another small one at the top of his abdomen. But he won't be intubated for days, and he should only be in the ICU for 24hrs or so afterwards. It won't be as bad. I just have to keep saying that. It won't be as bad.

Other than getting the news about the pacemaker, yesterday and today have just been normal days. Well, our ICU "normal." He has been having trouble with his tummy hurting and being gassy. I think it's because he is getting so much more formula than he did at home. He just seems really uncomfortable a lot of the time and wants to be held and patted for hours. We tried switching the formula yesterday, so we'll see if that helps. It will be nice to get back home and get back to working on nursing again. Then maybe I can catch up with him and he won't need the formula as much. They also turned his pacemaker back on to see if that would help with his irritability, but it hasn't seemed to make much difference. For once, the problem is just a typical baby problem and not cardiac related.

We will be hanging out in the CV ICU until Monday morning. Then maybe...we'll get to come home soon. I'm sad my boys won't get to trick or treat together in their cute costumes. We'll just have to stage a picture once we get home. It can be our new tradition: Wearing Halloween costumes to eat Thanksgiving dinner. But now that we are getting this pacemaker, I hope it means they will have plenty of years to make up for it.

October 27, 2011

Day 16

Well....nothing exciting today. Samuel has been in 1st degree heart block since yesterday afternoon. This is what it is called when his heart rate drops to those low numbers, but he is still fine otherwise. It's different from the complete (stage 3) heart block he was in for the first week post op. It's better...but still not our ticket out of the hospital. He's managed to tolerate this slow rhythm for a variety of reasons. In fact, some children are born with this kind of block and it only gets monitored periodically. However, since this was not the initial situation for Samuel and came about as a result of the surgery, it indicates some kind of injury was done to his electrical system during the operation. This many days post-op, it's not likely to be a swelling issue anymore.

During rounds this morning, the doctors started talking about a pacemaker again. The cardiologist and the attending doctor were leaning towards putting it in now. They wanted to discuss it with the other cardiologist and the surgeons, so they said they'd come back this afternoon. Shortly before Travis and I switched off, the attending came in to talk about it. He said the surgeons would like to wait and see a little longer. They were encouraged by the 24 hour periods we'd had with a sinus rhythm and felt it couldn't hurt to see if Samuel was in that small percentage of kids who regained total function in the 14+ day range post-op. The other doctors were still in favor of going ahead and giving him a pacemaker, even if it ends up being just a backup for him.

This decision is such a hard one to make for them. I can follow along with the logic behind them both. However, emotionally, it is so draining to feel like we are caught in this tug-of-war between them. I 100% don't want this pacemaker surgery. But. I also would like to bring my baby home, soon and safely.

Maybe what's more draining is dealing with my own internal tug-o-war over this decision I ultimately won't have much influence on. I want them to do what is best for Samuel. We may be putting in a pacemaker at the beginning of next week. We may not. We may be stuck in the ICU for weeks. We may not.

We are hoping for some more clarity tomorrow. Pray for patience and wisdom as we all struggle with making this decision.

October 26, 2011

Day 15

Day 15
Well, it has been another mixed bag of successes for Sam today. We've been hanging out at Levine Children's Hospital for two weeks now. We began the day by celebrating another full 24 hours of not being paced and being in a healthy sinus rhythm. Travis took the morning shift and got to hear rounds. They told us again the timeline for Sam if he maintained a good pulse. 48 hrs without being paced and the wires could come out, then 24 more hours of observation and then going home. We would even be able to skip going to the progressive floor and could be discharged from the ICU.
When Travis reported all this back to me, I just couldn't get excited. Not yet. I kept thinking...tell me all this again tomorrow morning and I will get excited with you. For today, I am remaining a hardcore skeptic.
I don't know if I am short changing Samuel by not getting excited and not allowing myself to hope that the end is in sight. I hope I don't give off that vibe to him in some crazy mojo-esque kind of way. I don't really believe in that kind of thing. I am just doing what I have to do to remain sane at this point. So, for me, sanity looks like me shrugging my shoulders at just 24 hours of good rhythm.
I came to tag out with Travis around 2 o'clock...and here's where I begin to doubt my whole vibe/mojo theory. Not 10 minutes after I arrived, Samuel's heart rate began to jump around and then eventually settled into the same slow rhythm we saw yesterday morning. As of 10 o'clock tonight, it has remained in this crazy slow beat. He's gotten into a deep sleep and even dropped down to 59. That makes me so nervous, but for whatever reason, he is able to tolerate it. At least, for now. They are checking his vitals and blood work every so often to make sure he is still circulating adequately, and so far, his vitals look exactly the same as they do when his heart rate is twice what it is right now. (Still don't understand this...)
I know that we have to make it through this kind of episode if we have any hope of making it out of here without a pacemaker, but man, it sure does a number on MY blood pressure.
My brain knows that nothing I do or don't do has any effect on what Sam's electrical system chooses to do on any given day. But...I promise to pull out my pom-poms and shout it from the roof tps the next time we make it a full 24 hours.
I promise.

October 25, 2011

Day 14

Day 14
So after crying all the way home last night, I was dreading returning to the hospital this morning. Travis called the night nurse when he got up and learned that Samuel had been paced throughout the night. This was disappointing, to say the least, and I had to drag myself away from my happy toddler to return to this room I am beginning to loathe.
When I walked into Sam's room, his heart rate was in the mid 60s and his pacemaker was unhooked again. Since I'd seen the team down in room 3, I assumed that they unhooked him before rounds and wanted to see what he would look like by the time they made it to our room. And I was right. He stuck around in the 60s the whole time they were in giving report, but they want him to ride this out. Even with his heart rate half of what it should be, he's still tolerating it very well. Good blood pressure and saturation levels. The pacemaker box is still right next to him on the bed, but he has remained unhooked all morning/afternoon. He looks and acts completely normal. (Add this to the list of things I completely don't understand.)
The plan remains that we are just going to wait and see. From what I hear from our nurses, the surgeon was ready to put him back on the schedule for a pacemaker, but our cardiologist disagrees. This is the same cardiologist that we liked so much in the clinic and who wanted Sam to have the surgery earlier to protect his lungs. So far, we've felt very comfortable with all the decisions he (and his colleagues) have made, so I guess we are going to stick with him for now. (Not that we seem to have any choice in the matter at this point...but it makes me feel better if I pretend we do.) I really don't want to have Samuel go through another surgery if we can help it, so I guess I have to be prepared to ride this roller coaster all the way to the end.
About 1 o'clock, after an entire morning of 60s heart rates, he started to have an irregular rhythm that was bouncing around. After 20 minutes or so of that, it settled into a nice steady rhythm of about 128 and doesn't show any heart block. It has remained that way for the last 2 hours.
I'm in that week postpartum where all my hair starts to fall out (weird pregnancy phenomenon)...I'm pretty sure it's all going to come back gray.
I guess I am just resigning myself to the fact that we are going to be here long term. I just keep telling myself to think about bringing home my sweet, healthy baby and not all the bills that will follow. Money is just money, right?

October 24, 2011

Day 13

Day 13
Well, when last we left our little Samuel, he had been in and out of a good sinus rhythm for part of an afternoon. Travis left the hospital that night with Samuel still in sinus and going strong. We woke up early Monday morning and checked in with his night nurse. He'd gone over 10 hours without being paced. Fist pumps in the air may have happened around the breakfast table...
Travis spent the morning with Sam, while I stayed at home with Luke. Our fabulous neighbors/surrogate grandparents had agreed to watch Luke in the afternoon so that Travis could get to work and I could get to the hospital. While Travis was at the hospital, Sam had a period of about 20 minutes when he slipped back out of sinus rhythm and into complete heart block. However, the pacemaker kicked in and kept him comfortable until his heart decided to pick back up. When I arrived shortly after noon, his heart rate was nice and steady. 130-140 when awake, and 120s when asleep. Just like it should be.
After our up and down weekend, I was hesitant to share the news because I feel like it's unfair to take you all on this roller coaster ride with us. It's getting to the point where I feel like I should be apologizing when the bad news comes...
But, after a few hours of seeing the nice steady green line on the monitor, I posted about our good morning on Facebook. It is so nice to see you all rejoicing with us. Without this amazing network of prayers and love surrounding us, I don't know what we would be doing.
His heart rate stayed good through the early afternoon, which prompted visits from the surgeon and the cardiologist. The surgeon felt really good about everything and cancelled the pacemaker surgery that was scheduled for Tuesday morning. The cardiologist asked the nurses to disconnected the wires from the pacemaker box, so that in case his heart rate did slip, they would have an idea of how low it would go and what it would do.
This disconnection was a big deal to me because it was the first step on the list of things they had explained to us that would have to happen before he was allowed to come home. I felt like we were finally making progress.
And then...
At 5:30, his heart rate started jumping around. 140s all the way down to 70s. However, unlike before, he was staying in a sinus rhythm (meaning, he wasn't going back into complete heart block). His vital signs and his coloring stayed good, so they decided to monitor it for a while. And then it just kept going lower. It was still bouncing around, but eventually was getting down into the 60s on the low end. However, he was still maintaining a good blood pressure and good saturation levels. The cardiologist told them to just ride it out.
By the time they did night rounds at 9 o'clock, he had been hanging out in the low 60s for a while. I think this was making the night staff a little nervous (and me too), so the hooked him back up to the pacemaker. They set it in the 80s, just to give him some more support, but also so that if his native rate came back, it could easily override the pacemaker.
After having such a good day, with him being unpaced for almost 24 hours, it was a physical blow to watch them plug those wires back into that little box. This back and forth, up and down...it's taking its toll on me. I think I have done fairly well, all things considered, in how I've handled the stress of the past two weeks. But this may be my breaking point.
The hardest parts, I am finding, are not understanding what is happening and not knowing what to expect next. If someone could give me a better explanation other than "This just happens sometimes..." it might be easier to swallow. Or if I knew I needed to prepare myself for another surgery or just another 2 weeks in the hospital...it might be easier. But this limbo and confusion just wipes out what little reserves I have left.
Pray for patience and clarity, my friends. We all need a good dose of it.

October 23, 2011

Day 12: Roller Coaster.... of Love

I settled in for a long day at the hospital, knowing that Travis wouldn't be able to tag out until early this evening. He only took one Sunday off from work and was scheduled to preach this morning and lead Youth Group this afternoon. We have officially passed our expected date of departure from the hospital, and with that, goes the Marmie back to Tennessee and the Daddy back to work. We put out the call for reinforcements and Grandma Lori from Utah stepped up. She will be hopping on a plane in the morning and arriving for hospital Days 13-20. Hopefully, we won't be there that long, but if there is one thing I've learned about pediatric cardiology, it's that you can never really give any kind of accurate time frame about anything. So, who knows? We may be putting out another SOS on Day 21.

Today, while I was changing Samuel's diaper around 11:30, I glanced up and noticed that his heart rate monitor was going nuts. This usually precludes his heart overriding the pacemaker, but I was too skeptical to believe it. I forced myself to finish changing his diaper and tuck him back in before I dared to peek at the monitor again. But...when I did, it was there. His heart rate was in a sinus rhythm. All by itself. 

It has continued to go in and out all afternoon. It had gone for long stretches of pumping on it's own...but it's also had little hiccups of pacing and then some longer intervals of needing to be paced. I have absolutely no idea what any of this means. All I really know is that we will be in the CV ICU until his heart has gone without a pacemaker for something like 48 hrs or until we are a couple of days post-op from a pacemaker surgery. 

We are thankful for another day of getting to see that beautiful, uninterrupted green line...even if it doesn't stick around all night. Any time it shows up, it means there is still hope we can avoid the pacemaker. It also means we all need a huge dose of patience. And maybe one of those neck pillows to ease the strain from constantly looking up at the monitors. 

October 22, 2011

Day 11: Pysch!!

So...apparently, we celebrated too soon. I returned this morning to find that Samuel's heart was back to being paced by the pacemaker. Some time during the night, it had converted back to a non-sinus rhythm and needed to be paced again.

I spent the entire morning and early afternoon staring at the monitor, willing it by sheer force of mind power to convert back. I must have gone, "3..2..1..NOW!" 10 different times this morning. Travis arrived to tag me out this afternoon, and soon after he arrived, he said the exact same thing. Unfortunately, it never worked for either one of us.

As of night rounds tonight, he's still being paced and we are scheduled for surgery on Tuesday for a permanent pacemaker. They may get to Tuesday and change their mind. They may not. This waiting game is far from being an exact science, so everyone just goes around wishing, and hoping, and crossing their fingers. It is quite possibly the most frustrating thing in the entire world.

October 21, 2011

Day 10: Boom Boom Goes My Heart

Day 10

About 2 o'clock this afternoon, I was standing in the line at Gap, trying to buy a new pair of jeans (sitting a hospital room for days on end is not helping me lose this pregnancy weight...), when  I got the call from Travis saying that Samuel's heart was overriding the pacemaker and beating on it's own. Nothing like jumping up and down and crying in front of strangers to get your afternoon going!

It's still a little slow, and it's been going off and on the pacemaker all afternoon/evening...But! There have been whole hours today when his heart has been doing the work on its own. We weren't sure we were ever going to see this kind of progress. In fact, I was pretty certain we were going to need the pacemaker. But, I am happy to say, I am probably wrong.

The transition from being on a pacemaker to being off it is not cut and dry. I just got home from the hospital after staying for night rounds. The pacemaker is being confused by what Samuel's heart is doing and it's firing at times it shouldn't. This makes it look like he needs the pacemaker, but he doesn't really. The night shift doctor changed some settings and it seem to make the pacemaker calm down and let Samuel do more of the work. When I left, his rhythm looked much better and he was sound asleep.

I don't think Travis and I can convey enough just how thankful we are for your prayers. We are so excited that God seems to be saying yes to this particular one.

We aren't out of the woods (or the CV ICU) just yet, but we have a lot of hope. Day 10 rocks!

October 20, 2011

Day 9

Day 9

After my crazy long night last night, I was anxious to get back to the hospital this morning. They reassure me every time I leave that they will call with any changes, but I always wake up wondering if he's really okay. After I pumped at home, I headed in. I knew rounds were later on Thursdays, but I needed to see for myself that he was still just hooked up to the little pacemaker and not on something more dramatic.

When I arrived, he was swaddled up and looked completely content with the world. They hadn't had to make any changes to his pacemaker and the nurse said he had slept most of the night. That was encouraging to hear, but I was still anxious to hear what the discussion would be during rounds.

When the team came in, I was bracing myself for them to say they were moving the decision date up. However, before they even got to talking about it, the cardiologist got excited about something he saw when they paused the pacemaker. (Something about a p-wave for those of you who are cardiac savvy) They decided to do another EKG this afternoon to see if they could get a better picture of what exactly was happening. They paused it again before they left and didn't see anything that time, so the excitement died down a little. After having been burned so recently, I kept telling myself to not get my hopes up.

The EKG was done a few hours later and still showed Samuel to be in complete heart block. We spoke with the doctors some while Travis and I were both there this afternoon to try and get a little more understanding of the heart and what we needed to see happen if we were going to avoid a permanent pacemaker. They are tentatively scheduling us for surgery on Tuesday, but still holding out hope that it will come back before then.

The cardiologist still hadn't seen the EKG results by the time I left. However, I was only about 10 minutes down the road when I got a text from Travis saying that the cardiologist had come in to pause the pacemaker and had seen conduction happening. While they are so careful to not get our hopes up, they said that it was "promising." The surgeon stopped by a little while later and saw the same thing and seemed to be encouraged.

So, maybe, just maybe, we are going to get to be one of those cases they keep telling us about. We have been on the losing end of so many statistics lately that it would be really great to land in the positive on this one. I can't wait to bring my baby home. Pacemaker, or no pacemaker, I am ready to be done with this particular adventure.

October 19, 2011

Day 8

Day 8

This past week we've spent in the CV ICU has been one of the longest of my life. In so many ways, going for a shift at the hospital is like taking care of Samuel at home. I'm changing diapers, trying to nurse, soothing him when he cries, and trying to entertain him. It's harder to do with the challenge of not being able to scoop him up whenever I want or walking him around to calm him down. But, for the most part, he's just acting like a normal baby. Except for the whole wires sticking out of his chest: don't pull on them, don't pull on them, be careful, BE CAREFUL!

Getting him out of bed to nurse, especially after our little episode yesterday, is an exercise in faith and prayer. Everyone reassures me that it's okay to hold him and to move him adjust while we are nursing. But. I'm so nervous I'm going to inadvertently yank something out of him, that will subsequently lead to a nurse yanking him out of my arms and running down the hall.
(That's not exactly what would happen since he's not 100% dependent upon the pacemaker and has an underlying rythm that would buy them enough time to get his heart paced in another way if the wires came out.)

Travis had to work tonight, so I took the afternoon/evening shift. We had a better nurse today, so that made our day so much easier. Nursing is still a challenge, but we continue to try for every feeding that I'm there. We'll figure this out. He already does so much better than he did before the surgery. Once we are home and he's not so fragile, I think it will just get better and better.

Samuel had another stable day until about 9:30 tonight. They had made no changes to his pacemaker settings, his heart continued to sound great, and he's eating well. If it weren't for the need of the pacemaker, we truly would be at home by now. His scar is even looking like it's beginning to heal.

After night rounds, I had Samuel in my lap again, trying to nurse, when his heart rate dropped like it had before. I paged a nurse and a couple of people came into the room. While they were waiting for the nurse practitioner to get there, they switched his pacemaker box to the back up one that is by his bed at all times. By the time the NP arrived, his heart rate seemed to be going back up and appeared to be pacing again. They got a new back up, marked his original one as bad, and left us alone again. We got him back into bed after he finished eating, and I tried to get my own heart rate to slow back down.

However, about 10 minutes later, his heart rate dropped again. The nurses came back in and they ended up having to turn his voltage back up again. We'd gone from 5 post-op, to 9 at the first adjustment, to 16 tonight, before they got it stabilized again. Because his little pacemaker box is only capable of so much, they also had to wheel an external pacemaker machine to stand guard outside our door in case they needed a higher current than was possible with the little portable box that he's been using.

They got him settled back down fairly quickly. I, however, wasn't sure I could leave his side. The last hour had taken it's toll on me and I was a mess. I hadn't planned on staying the night, but I wasn't comfortable leaving. I got Sam to go to sleep and tried to settle in on the couch there. After about an hour, the NP came in to check on him and encouraged me go home. He reassured me that Samuel was stable, that even if the pacemaker completely went kaput, he would have plenty of time to get something else in place before he was in danger.

Exhaustion finally won and I left about midnight. I have a feeling we are getting this pacemaker sooner, rather than later.

October 18, 2011

Day 7

Day 7

Today was a disappointing day for me. I took the morning shift again so that Sam and I could work with the lactation consultant around 10. When I arrived his pacemaker settings had been changed. There are lights that flash on his pacemaker, and we'd only been seeing one color of lights. This morning, one side was flashing a new color. I didn't know what this meant, but I foolishly got my hopes up. I spoke with the nurse when she came by about 30 minutes later, and she was a little bit clueless about the settings (We've been switched over to non CV nurses in the recent days, so these nurses don't have as good of a grasp on the specifics of his pacemaker. No one told us about the switch, but it became fairly obvious today.). So, for no good reason at all, I began to think maybe he was doing better.

However, when the doctors came by for rounds about an hour later, I learned that they had just changed his pacemaker to a new setting and the different colored lights didn't mean anything. He is still in complete heart block and the pacemaker is needed to pace his heart at a higher rhythm. He still has an underlying heart rate, but it's too low to keep him with a stable blood pressure.

After having the new setting explained to me, I wasn't devastated. However, throughout the rest of the day, I found myself to be irritable and grumpy. We had our first bad experience with the nursing staff, which didn't help matters. Most of our nurses have been spectacular, but this one seemed to be impossible to track down. Even though Samuel isn't the sickest kid in the CV ICU anymore, we are still completely dependent on the nurses to get him out of bed for feedings. It was annoying to never be able to find her, or to feel like I was inconveniencing her by asking to nurse.

I also had a scary moment with Samuel this afternoon. I was holding him in the rocking chair next to his bed, when I heard the monitor beep. This isn't unusual because he is always knocking his sensor off his toe that measures his oxygen levels. I glanced up at it and noticed that his heart rate was dropping. It was being paced at 120, so seeing it go into the 90s and then 80s totally freaked me out. The nurses and doctors came in and messed with his pacemaker. They had to turn up the voltage in order to get the pacemaker to capture again. Basically, the places where the wires are attached to his heart are developing a little scar tissue around them. This thicker tissue makes it a little harder for the electricity to get through. This is not unusual for a temporary pacemaker. They fixed the settings at a higher rate and his heart rate stabilized again. He showed no signs of distress during the whole episode. 

My heart, however, was racing for the rest of the afternoon.

My one positive for today is that Samuel had a really good nursing session. So, I will take that and run with it. 

I needed some perspective today, so I pulled these up to look at. The first picture is Samuel, about 2 hours post-op. The second one is him taking a nap this morning (...and yes, he is sleeping with his eyes cracked open. So weird.). He has improved leaps and bounds in the last 7 days, and even if we have to have a pacemaker, I am extremely thankful that he has done so well and that he is still here with us.

Day 1

Day 7

October 17, 2011

Sam, I Am

If it weren't for that darn pacemaker, we could be at home enjoying these smiles!

Day 6

Travis needed to be at work for a few hours this morning, so I returned to the hospital again bright and early. When I arrived, Samuel was sleeping peacefully and his room was quiet. The day nurse came in a few minutes later and said he had a very calm night. After staying awake for so long yesterday afternoon, I suspected he would have a sleepy night, and I was right. He would wake up to eat and then go right back to sleep. Other than having to replace the IV in his hand, they said they got to leave him alone most of the night. This rhythm to his day is so similar to what his schedule was like at home prior to the surgery...it's so surprising to me that he's already back in that mode. Babies truly are resilient little things.

Samuel woke up while I was talking to the nurse, so I got him out of bed to hold and rock him for a little while. The team came by to do rounds, and we are a much simpler case these days than we were last week! Basically, everything is returning to normal, beyond the need for a pacemaker. They stopped all IV medications and gave the ok to remove the central line. They put the IV in his hand last night so that they would have one available if they need it, but it's currently not hooked up to anything. In fact, after rounds, they even took the IV pole away. Immediately post-op, he had four of those surrounding his bed, and now we are down to zero machines, besides his vitals monitor. His monitor used to have like 10 different things they were watching, but now it's just down to 4. Amazing.

We even got the go ahead to try nursing again. He did okay, but not stellar. However, I have hope that we can continue to work on this and that he'll be able to learn to nurse effectively. I am SO tired of pumping. I set up an appointment with one of the lactation specialists here at the hospital for tomorrow, so maybe she'll have some tips. It wasn't as scary as I thought it would be to try to nurse. He seems so fragile to me, even though he isn't even on any pain medication. I guess I'm actually more afraid of hurting the pacing wires than I am of hurting him! The nursing staff has definitely drilled it into our heads how careful we have to be with them.

The pacemaker conversation deadline is looming for us and it makes me a little anxious. I spoke with the doctors about it this morning and they continue to be hopeful that the different chambers of his heart will start communicating with one another again. They hold out hope for at least a week, and will probably give it up to two weeks post-op before they make any decisions. Unfortunately for us, this means we will be stuck in the CV ICU until he either comes off the pacemaker or they decide to insert a permanent one. Like one nurse said, they are basically very expensive babysitters for him right now, but he has to remain in the ICU while the pacemaker is active.

If he has to have a pacemaker....well, so then he has to have a pacemaker. It's not the end of the world and it's definitely something we can deal with. I hate the idea of having another surgery and going through this process again, but it is what it is. He is a champ and this hospital is amazing and it will all just be okay.

I'm going home in a few hours and Travis will take the night shift. It's been hard living this disjointed life between home and the hospital but we are getting it done. Luke has been in great hands and been going on adventures with Dad and Marmie during the afternoons I've been at the hospital. He's such a good boy and so funny these days. I can't wait to have all my boys back under the same roof again. They are going to have such a good time growing up together.

October 16, 2011

Day 5

It's been another good morning for Sam! Travis took the first shift this morning, and by the time I made it to the hospital this afternoon, there were even fewer things surrounding his bed. He lost two IV's and got to take the nasal oxygen off. He doesn't have to have anything on his face anymore. Soon after Travis and I switched off, they let me take him out of the bed and hold him. Because he is still using the pacemaker, we can't just pick him up whenever we want to. However, the nurses were super helpful in getting him in and out of bed for me so that I could have some cuddle time. He ate a bottle and took a little nap in my arms before they had to mess with him again. It was a good feeling.

I was with him from 2-10:30 this evening and he spent most of that time awake, so I haven't had as much down time in his hospital room as I did before. I'm feeding and burping and changing diapers, much like I would at home....just with a little nursing supervision. It's nice to hand off the really nasty diapers to someone else by claiming I'm too uncomfortable with all the wires. :)

There has been no change in his heart today. He's still totally dependent upon the pacemaker. So, for now, we continue to wait and see.

October 15, 2011

Day 4: A Good Day

Our day began with getting to feed Sam and has just gotten better from there. These are the kind of days I like to have. It's been a day of noticeable, tangible progress. The amount of things surrounding his bed has noticeably decreased. It seems every time I come in now, something else is missing. I really, really like that.

Like I said below, they continued to wean him off the high flow oxygen overnight and he handled it very well. So much so,that by the time we came in this morning, he was completely off it and just on regular oxygen. They've decreased that throughout the day and will most likely remove it entirely by tonight. His saturation levels have been 99 to 100% all day. Yay! This is one of those numbers that was always in the 80's for him before the surgery, so it's a readily noticeable change post-op.

His chest tube drainage had slowed dramatically in the last 24 hours, so they were also able to remove that this afternoon. I was at home for that part, but Travis said it was quick and easy. He now has no type of drainage tube left in him.

His heart function was about the same this morning when they came through on rounds. Dr. Maxey, the surgeon who did his repair, was not at all surprised or uncomfortable with what his heart is doing. Samuel's BP has still been flucuating throughout the day, but in a much lower range than yesterday.

He used to have three different poles that held all his different IV medications, but when I returned this afternoon, he was down to just one. He got his temperature probe removed...mostly cause I think they were tired of changing all the dirty diapers! Right now, he still has the patches on him that measure the amount of oxygen that gets to his skin, but they just ended a medication and if that goes well, those will be removed tomorrow. He still has all 3 IV's in, but I'm pretty sure they will take his central line out tomorrow.

All in all, today has been a good day. He's eaten 3 times today, and has been resting more comfortably. He's currently sound asleep and snoring a little. It's getting harder and harder to not be able to hold him. The more he looks like my sweet baby, the less afraid I am to touch him.

Things to pray for today:
-Continued improvement in his heart function so that we can come off the pacemaker
-Good bloodwork so that they can further decrease medications and remove different things
-Patience for Travis and I as we stare at monitors
-Rest and energy for the times at home
-Comfort for Luke as he deals with his world being upside down


Sam got his first bottle this morning!

I arrived back at the hospital around 8:30 this morning. I noticed right away that we'd lost another machine! He is off the high flow oxygen now and just on regular oxygen. They even turned that down some more and his saturation level has stayed at 100 for the last hour. This means he got to eat! We warmed up some of the breastmilk I'd been freezing and Travis arrived just in time to help me feed him. We still can't hold him, but this was pretty good. He ate 2 ounces, burped, and is conked out right now. They haven't even done rounds yet this morning, but I was too excited to wait to share our good news!

Way to go, Sam!!

October 14, 2011

Day 3

Well, I ended up staying til about midnight last night. I just needed to see that even when he had episodes of lower saturation, that they could fix it easily. So once I sat through it a few times and he was resting comfortably, I knew I needed to get home to get some sleep. I woke up worried about him and headed to the hospital shortly after I pumped for the morning.

He had a good night, according to the nurse. However, I'm learning that they don't give a lot of details out right away. So, after I'd been here for a while, I learned more about the lay of the land. He had remained on the CPAP overnight, but when the surgeon came through this morning, he didn't like that his BP was a little high. So, they messed around with his drugs a little. When I first came in, they were talking about the possibility of having to put him back on the ventilator because of the BP and because he was breathing a little too hard. This wouldn't necessarily be a setback, it would just mean that he needed a little more time before he was able to take over the hard job of breathing. If he hadn't just had open heart surgery, it wouldn't be a big deal at all, but they don't want any unnecessary strain on his heart.

Before rounds, they switched him over from the CPAP to just high flow oxygen through a nasal tube...like the one you see people use when they have to carry oxygen around with them...the prongs that go into his nose a little and are attached to the clear tubing. They thought the CPAP mask was making him uncomfortable and irritated him. The mask has been removed for about 2 hours now and his BP is lower; so, apparently he has a little temper when things aren't just the way he likes them. :)

The rest of the report given during rounds was status quo. He still has heart block, but his underlying rhythm is still 90+. This is in the long term wait and see. His blood work is fine, and the rest of his bodily functions are doing well. He's has a ton of dirty diapers in the last 12 hours, which is always a good sign. He will actually get his catheter out in a few hours, since his urine output has been good. They will continue to monitor him throughout the day and if all goes well, he may get to lose some other lines. He may not, but that's ok, too. At this point, it doesn't mean one thing or another that he still has them in.

He's been awake much of the morning, but has just drifted back off to sleep. It was good to see him awake and alert. He was able to follow my voice and find me with his eyes when I switched from different sides of his bed. It's so good to see him alert and calm. If his levels remain well with the oxygen, then he will get to eat. I hope this happens soon because I have a feeling he will be happier with a little food in his belly.
I'm going to go back home and rest for a little while. Travis is here, so we will continue to play tag today like we did yesterday. We'll update when we know more.

7PM Update:

Sam has had a pretty uneventful afternoon. I returned to the hospital around 3 after going home to take a little nap. The ICU doctors were in a couple of times shortly after I arrived, but didn't change anything. They checked his blood work and were satisfied, so they've left him alone much of the day. He continues to have the oxygen in place through the nasal prongs. They removed the catheter after lunch and that has been an easy transition. They didn't remove any other lines, but like I said, that's not a big deal. They are still holding off on feeding him because of the high flow oxygen. It gets a lot of air into his belly, so if you add food to the mix, then he would most likely throw it up and there is a possibility of aspiration and we just don't want that. His oxygen flow is at a 4 and they want it at a 3 before they try food. He's good for another day without it, so they aren't going to push it. He's getting nutrition through his IV for now.

I've had a quiet afternoon of sitting in his room, talking to him while he was awake and helping him keep his pacifier in. He's been asleep for over an hour now, so I went to get dinner. The nurse figured out a way to swaddle him that would help prop the pacifier in his mouth. He's never really been interested in a pacifier at home, mostly because he hasn't needed one. The low muscle tone around his mouth that keeps him from nursing well, also affects his ability to keep a pacifier in. But I tried just about every type of pacifier that they make and finally found a brand that is shaped in a way that isn't so hard for him to suck on. I brought one from home and it's been a useful tool in helping him calm down. And now that they have a way to keep it in, we don't have to stand by his bed and pop it back in all the time.

I've also been bugging the nurses and eavesdropping on every conversation so that I can learn more about what all these machines are doing and saying about Samuel. Today, I learned more about the pacemaker and how to read it's output. His heart is being kept at a rate of about 140. His heart is doing half of that work. For every two to three beats, his heart is firing on its own once. The rest of the time, the machine has to fire it for him. This is a good sign because it means that his heart does have a working electrical system...it's just not perfect. As they've told us many times, this can continue to improve and they will give it every opportunity to do so. He is still par for the course for the type of surgery that he had.

We've been weaned down to sharing a nurse with the kid next door, so we are definitely off the super critical stage. Yay for baby steps!

Things to pray for tonight:
-Continued improvement of his heart function
-Improvements in his ability to breath deeply and calmly on his own so that he can start feeding
-Patience for Travis and myself as we sit and watch monitors all day long
-And as always, good rest and energy for Travis, myself, and Marmie as we face this long week

October 13, 2011

Day 2 Update

As you can see from my last post, I went home for a few hours to play with Luke and get a break from the hospital room. Travis stayed with Samuel. While as I was at home, Samuel wasn't breathing as effectively as they would like to see, so they put him on a CPAP machine. This isn't a breathing tube, but more like an oxygen mask. He also spiked a fever of about 101. They gave him some Tylenol, but it hasn't come back down as of 9PM tonight. It's not completely unusual post surgery, but it is a little higher than they normally see. Because it's so soon after surgery, they aren't saying infection yet. They are just going to continue to monitor it (along with a zillion other things...).

His underlying heart rate came up another 10 points or so after they extubated, but the surgeon said he isn't convinced that both sides of the heart are "talking" to each other yet. Again, this is just another wait and see situation. Travis spoke with the surgeon, so it's been a while since they checked it.

They just came through with night rounds so I got to ask a few questions. His heart rate has been stable all afternoon. They are going to hold off on feeding him while he is on the CPAP machine because it's liable to make him throw up. He's been awake a lot and been producing a lot of dirty diapers...which I don't have to change! Right now, the biggest thing going on is with his breathing. In the last hour since I started writing, they've had to tweak his CPAP machine a lot and his saturation levels (how much oxygen is in the blood) have dipped once or twice. These aren't unexpected issues after coming off the ventilator, but it is still hard to watch.
I was excited this afternoon when the breathing tube came out, but it's harder than I thought to see him awake and squirming and I'm not able to pick him up to soothe him back to sleep. He just came through a little episode where he was awake and having some difficulties and it was killing me that I couldn't pick him up. He's asleep now and his levels look good again. I was planning on heading home soon, but I think I may be here a while. Whether it's a good thing or not, I'm slowly learning what all those numbers mean and I just don't feel comfortable with where he is at. That doesn't mean he isn't in capable hands...I'm just being a worried momma! I want to be back for morning rounds, though, so I eventually have to get some sleep.
Things to pray for tonight:
-That Samuel's heart function continues to improve
-That he is able to breath easier and deeper so that they can remove the CPAP tomorrow morning and he can eat
-That his oxygen saturation levels remain high and his respiratory rate lowers
-For deep, restorative sleep for Travis and (eventually) me

A Little Comedy Courtesy of Luke

Travis and I switched places this afternoon so that I could spend some time with Luke. Because I'd been sitting in the hospital for two days, I decided I needed a good walk, so we hit up the greenway. It's been raining for a few days so there were lots of puddles to explore....

Goodbye tube!

Breathing tube taken out about 15 minutes ago. Breathing on his own for the first time in almost 36 hours. Way to go, Sam!!

Post Op Day 2

Travis and I arrived back at the hospital around 8:30 this morning. We both went home last night to get some rest. The night before the surgery, Samuel had decided to stay up late and party, so I faced the surgery yesterday with only about 3 hours of sleep on board. It was a long day, and as much as I would have liked to stay and be with him through his first night, I knew I would never make it through the coming weeks if I didn't get some rest while I could. We got an update when we woke up this morning and then made our way back down to Charlotte.
Samuel had a good night. They are continuing to pace his heart with the external pacemaker, however, we've had encouraging news on that front. Yesterday, after his surgery, his underlying heart rate was in the 40's. Today, they've checked it multiple times (meaning they turn the pacemaker off for a minute or two to see what happens) and his heart rate was in the mid 90's every time. He was still in heart block, but having a higher heart rate is a good sign. We still won't know about the possibility of a permanent pacemaker for many more days, but they are pleased that his heart rate has come up.
We were here for rounds this morning and heard a bunch of numbers that made absolutely no sense to us. The highlights for us were that his underlying heart rate is much better, his chest tube output is good, and he will probably be coming off the ventilator this afternoon. The chest tube will probably come out either overnight or in the morning, along with some of the other things like extra IVs. The chest x-ray this morning also looked good.
We are excited about him being extubated (breathing tube coming out) today. There are a few tricks to this since he has down syndrome and has what they call a "floppy" airway. However, they are encouraged by all his numbers and outputs, so they are working on weaning him off it as I type. I think it will be a few more hours before they pull it, but they are already heading in that direction.
So, I'm feeling pretty good about him today. Like the doctor told us after rounds, it is like Sam has been reading the textbooks because he is doing exactly like they expected. His main issues aren't life threatening and everything else is being monitored and treated with medications. This isn't going to be a lightning fast recovery and we will be in the ICU for a while. We don't even really have a guess to how long he will be in here, but I would say at least a week but probably longer. However, he will definitely be in here while the pacemaker is on.
Travis has gone home for the afternoon to hang out with Luke and get some more down time. I will stay for a while, and then switch with him this afternoon. The CV ICU (Cardiovascular Intensive Care) has a desk and a small couch for us to hang out on, but it's cramped with both of us in here. Since I am continuing to pump milk for Samuel, it makes it easier for me to time my pumping schedule around my visits so that I can continue to store milk here in the freeezer for him. They are hoping to start feeding him by tonight, through a tube at first, and then back to bottle eventually.
His blood pressure has remained low, but they just added some fluids back to help with that, and it went back up within 5 minutes. He's also coming down on his sedation levels, so he's squirming around a lot more.
I think that is all for now. I'll update again later this evening.
Here are some specific things to pray for:
-That Samuel's heart continues to regain function and that he will be able to be taken off the pacemaker
-That his blood pressure can stabilize
-That his extubation goes well and that he won't have to have the breathing tube put back in later
-That his underlying heart rate continues to climb
-That Travis and I get effective rest times away from the hospital
-Rest and energy for Marmie (my mother) as she takes care of Luke during our abscenes during the day

Thanks again, over and over, for your continued support and prayers!

October 12, 2011

Post Op Day 1

We were able to see Samuel about an hour after we spoke with the surgeon. Because so many of the other Down Syndrome/Heart Defect parents had warned us about how jarring it is to see your child hooked up to so many different machines, we had prepared ourselves by looking at pictures of other infants post-op. The medical staff we had met with during our Pre-op appointment were also very explicit about just what would be in and on Samuel's body when they brought him out into the CV ICU. So, with all that floating around in my head, I was very nervous about seeing him.
However, I have to say, it wasn't as bad as I feared. Maybe because we were prepared or maybe because it was such a relief to see our sweet baby alive that it just didn't matter how many cords were around him. He still looks like Sam to us and that helps. I took some pictures of him, but I don't want to subject anyone to that that doesn't want to see it. I'll figure out a way to post them once I'm back in front of a computer.
It was definitely hard to go from a baby that looked completely healthy to one that is hooked up to a zillion machines, but hopefully, it will all just get better from here. He will remain intubated until tomorrow morning, so long as he has a good night. Right now, they are working on stabilizing his blood pressure and some other things I vaguely understand. His heart is still being paced with the external pacemaker and will remain so for a little while. They will continue to check his rhythms to see if his heart can take over that function again, but right now, with the surgery trauma and swelling, it just makes it easier for him for the pacemaker to correct the heart block. He is sedated and looks comfortable. He hasn't swelled much yet, although that is probably coming.
We are going to stay with him for a little while longer tonight, and then head home. Neither one of us got much sleep last night and we need to do some catching up before we settle into this ICU routine. We can't stay in the room with him overnight, but have access to sleep rooms if we do decide to stay here.
We will be back before rounds tomorrow morning to see what kind of night he had. They warned us that the 12-16 hour post op time can be a little rocky, but I honestly don't have the stamina to stay here and keep watch at 2AM. We feel like he is in the best place possible and are still so impressed with this hospital and every staff member we have come in contact with. We are so lucky this is just down the road from us and not half way across the state. Thank goodness for silver linings.

Samuel's Surgery Updates

We arrived at the hospital at 5:30 and got checked in. Samuel stayed asleep until we reached the Pre-Op suite. I was worried he would be extra fussy since he had to stop eating after midnight, but he was a champ. He was wide awake and happy while they checked his vitals and we met with the nurses. It was nice to have him in a good mood that last hour we got to be with him. We rocked and talked to him while we waited for the anesthesiologist to come. Travis held it together pretty well, but I have been a mess since we left the house. I know he is in the best possible hands, but this is still the hardest thing I have ever had to do. We gave him over to the anesthesia team about 15 minutes ago and are now in the cafeteria eating breakfast. It will be about an hour and a half before we get our first update. They are putting him under and then getting him ready for the surgery with the IVs and the myriad of other things that have to be in place before they start.
Thank you for your prayers and thoughts today. We need them and appreciate them.

8 AM
We just received word that the surgery has begun and that everything is going well. We were given a private waiting room since I have to pump and because we will be here for so long. It's a small room that has 2 chairs, a small couch, and a few tables. It has a window that looks out on this appropriately gloomy, rainy day. I think it would be weird if it were a sunny, bright day outside while we are having such a hard day inside. Travis and I are watching Hulu and trying to keep ourselves distracted.

Samuel is now on the heart/lung bypass machine and everything is still going according to plan.

Latest update relayed to us from the surgical nurse: They are still working and everything is good.
It's not exactly all the information I would like to know, but it covers the basics, I guess. We don't get to speak to her directly; it's relayed to us by the very nice hospitality coordinators on the waiting room staff. But, I guess I don't really want the nurse to be on the phone with me instead of doing whatever her job is in there.
We are beginning to get a little antsy now. We are trying to distract ourselves with gadgets and Words with Friends and endless games of Angry Birds. It has been so good for us to see your comments on Facebook and here. We can feel you all here with us and know that Samuel is being surrounded by a great cloud of witnesses.

Just heard that Samuel is off the bypass and they are closing! We are so excited. For such a short message, it conveys so much. His heart is pumping on it's own again and that seems like such great news to us. We still won't know any specifics until we get to speak to the surgeon.
There are a few things that we have to be concerned about and won't know until he comes to fill us in. First, how well did the repair go? They have to create two working valves out of one big valve and this can be tricky. They said making the left valve so that it creates a good seal and isn't leaky is the hardest part of the whole surgery. Depending on how well it went today, we may or may not have to have follow up surgeries at some point in his life. Secondly, there is a possibility that Samuel will need a pacemaker. There is electrical tissue in the heart that looks exactly the same as non-electrical tissue. The surgeons know where it SHOULD be, but with an abnormal heart there are no guarantees. He may just need a temporary pacemaker to help with his rhythms while the heart recovers from the trauma of the surgery, or he may need a permanent one. We won't know for a while.
We don't know a whole lot right now, but we are hoping that since the surgery went according to the time schedule they gave us, that that is a good sign. Fingers, toes, and everything else crossed. Mostly just praying our hearts out and thanking you for yours. It's so amazing to have you all on our side in this. Much love, friends. Much love.

Just heard that the surgery is over. Once the surgeon wraps things up in the OR and then dictates we will meet them him.

We just met with Dr. Maxey and it seems like the surgery went very well. The valves look really good and that was the most encouraging news. He said his heart rate is a little low, but that is not abnormal. They are using the pacing wires for now, but we won't have to worry about anything for at least 3 more days when it comes to discussing the pacemaker. His lungs seem to be doing great and he came off the bypass very easily. He is up in the CV ICU and getting settled in. They will let us go up in about 45 minutes to see him.
We are feeling good with this news and are relieved this long morning is over. There are many other factors that can and will come into play, but it will be a few days before anything is worth discussing. For now, he gets to work on recovering from the surgery and letting his heart calm back down. He will be sedated for a while and still have a breathing tube. That could come out later tonight, but probably not until tomorrow morning.
Thanks again for sticking with us through this ordeal. I won't be updating hourly anymore, but I will update again this afternoon/evening. Love to you all and glory to God.

October 7, 2011

#1 Defender

Last Thursday, I was frantically running around my house, trying to clean up before our babysitter arrived to watch Luke when I noticed a missed call from the Sanger Clinic and a voice mail. Since we were due to be at the hospital for our pre-op appointment in two hours, I wasn't sure what they could be calling us about. I dialed it up and listened as a woman told me to stay at home, do not come to the hospital, and to call her back when I got the chance. Despite the fact that her message wasn't really alarming, I found my heart hammering as they connected me to her phone. She explained that she was a nurse practitioner for the clinic and that they had made some changes to the surgery schedule that morning due to new patients who needed Samuel's surgery slot on the 6th. (And by new, I mean brand new. As in newborn. I am so glad we at least got to bring Samuel home for a while before we had to face this surgery. I can't imagine what those families are going through.)

I was completely understanding of needing to give Samuel's slot to someone else, but I was wildly confused when she then said it had been rescheduled to the end of the month. They were waiting on our (out of town) cardiologist to weigh in on the debate, but they were penciling us in for the 27th for now.

At our 4 week follow-up visit with the cardiologist, they explained to us about Samuel's PDA and how the high pressure in his lungs meant he wasn't exhibiting the expected signs of heart failure that his AVSD should be causing. Since this was new information for us, it really hit us hard when he explained that because the pressure wasn't dropping, it would eventually cause irreparable damage to his lungs and we would not be able to wait until he was 3-4 months old to do the surgery. He said if nothing had changed by his 6 week visit, we would schedule the surgery for some time in the weeks just prior to his turning 2 months old.

So, when nothing changed at the 6 week visit, the cardiac team (surgeons, cardiologist and the rest of the staff) met and discussed Samuel's case and then decided to do the surgery on Oct. 6th. He would be turning 10 weeks old that day. Travis and I were already feeling like we were being a little risky in waiting until he was already past that 2 month mark, so when the NP said we would be pushing it back to 3 months because they wanted him to be bigger, we were confused, upset, and a little frantic. The information she had about his weight was inaccurate...he was already 1.5lb larger than the weight she had. We felt like maybe Samuel's case was slipping through the cracks a little. Travis got on the phone immediately to try and track down our cardiologist, while I had to change diapers and fix bottles and pump and keep the toddler from running out after the school bus.

We tried to keep things in perspective, since we knew a major voice was missing from the conversation, and that the cardiologist would be back soon to weigh in. However, it took a big chunk out of our confidence level of the doctors who were making these decisions about our son. We couldn't figure out why they would have scheduled the surgery initially for 9 weeks, when really they wanted to wait until he was bigger. What was better for him? To be bigger or to protect his lungs? We didn't know and we were counting on these men and women to tell us what was the best thing for our son. For them to change their mind suddenly, it just threw us into a tailspin.

It was a bad day.

Here's the thing about suddenly becoming the parent of a special needs baby with a heart defect that is going to be the hardest for me: You have to be the one who advocates for your child. I am not a cardiologist, geneticist, educator, physical therapist, or any other of the myriad of professions my son is going to need in his life. I went to school for music and religious studies. I can teach him to sing and love music or tell him about Jesus. I cannot know if he should be receiving therapy for his low muscle tone at 2 months or if it's okay to wait until he is 4 or 5 months old like our case manager says. I do not know how to teach him to nurse, despite all my attempts. I will not know the best ways to teach him to count or read or learn. I barely even understand the heart condition he has, so I haven't the slightest clue how to weigh the pros and cons of his current situation.

But, while I have no idea how to answer many of the questions facing us about our son, I do know that it is my job to find the best qualified people who CAN answer them. I'm going to have to fight for him, to confront those who give conflicting advice, to track down other doctors or specialists, and be relentless in this pursuit of giving him the best life we can. This is almost the exact opposite of my personality.

Samuel is lucky that his father, while like me in many aspects, is better at this role than me. Together, we are learning how the system works and how to do our job as his #1 Defender and Advocate.

I know that this is the same role we fulfill for Luke, or that any parent takes on for their children. But in Luke's first two years of life, I've never once had to go out of my comfort zone in order to make sure he is getting what he needs. I've had to constantly push against natural tendencies since the day Samuel was born. He's just making me work a little harder at this than Luke has so far.

In the end, the cardiologist was reached and they decided to just push the surgery back one week. We went in yesterday for our pre-op appointment and will be returning bright and early Wednesday morning for the surgery.

Because we thought we would be doing the surgery on the 6th, we planned on doing Samuel's baptism on the 2nd. Initially we'd scheduled it for November to accommodate all of our out of town family and friends, but we wanted it done before the surgery. We wanted our families and sponsors there, but had accepted that it could not happen on such short notice. But we were wrong. Every family was able to send at least one person to represent them at the baptism. It was such an out pouring of love on our family to see the lengths to which these people went to be there for Samuel and for us.

That was a good day.