Thank you all!

He is home! I knew when I left on Thursday that we wouldn't be there much longer, but I didn't expect to have my boys home the next day! Logan's drainage had been under control, he just needed an echo and some blood work and that chest tube removed and he was good to go. I figured it'd take a few days.
Jacob kept me posted on the day as he went into getting the echo, Logan had to be sedated, so I was super curious how he handled it, but I'd send message after message and get no answer, that's when I knew something was going on. Then I get a picture of Logan in the car seat all bundled up ready to come home, My stomach was in knots, my anxiety through the roof. I couldn't even stand waiting the 2 hours it would take for them to get home.

We are just so ecstatic to all be together again. It was so much shorter than we expected, but the longest 10 days of the year. He rocked this recovery. I couldn't be more proud.

With that being said, Jake and I want to thank everyone from the bottom of our hearts for everything. The thoughts and prayers, the messages, the cards, the gifts, and everything in between. We are overwhelmed by the generosity of everyone that took time out of their lives to send us gifts and cards, the thoughtfulness will never be forgotten. You have all made our journey a little easier on us, and for that we are forever appreciative. (Even to the (still) mystery person who sent the BooBoo Buddy Bear, which was a huge hit!)

Special thank you to Carol and Sue for watching Corbin during our first week in the hospital. It was nice to know that we didn't have to worry about him and could concentrate all of our energy on Logan. It was a huge weight off of our shoulders and we cannot thank you enough.

The nursing staff, even though they'll probably never read this, in the bay in the PCCU are just absolutely amazing. I cannot stress enough about how good the team of nurses there are. I always know Logan is in the best of hands if we aren't there. It's such a good feeling. Thank you.

Jakes work for being so understanding in our time of need, and with such short notice of needing to be available for his family. I, personally, am extremely thankful for the kindness they have shown to our family.

We just cannot thank you all enough for being there for us. We love you all!

Two Steps Forward...

One step back. That's something you always have to remember being in a situation like this, is that sometimes its not always forward momentum. Logan has had a huge couple of days. He was extubated, then lines and medications started to disappear. The first day he was extubated, he wasn't quite himself, he was tired and grumpy and just wanted to be left alone. I really don't blame him. The next day he was able to start eating, let me just tell you that once he got some food into him, he was a new man. I started to see him again, my Logan. He did great with food and liquids, and he's on a normal diet now. YAY!

Last night we discovered that his chest drainage tube isn't working correctly. They are assuming there is a clot in the tube within his chest and instead of allowing fluid to exit through the tube, the fluid is actually being drained from around the tube. So, needless to say, there is no easy fix for this. They cannot remove the clot. For now we are using gauze pads and his diaper to help absorb any drainage. The issue is that it cannot be measured. In order to have a chest tube taken out he needs to have a minimum amount of drainage per 24 hour period. Without it being measured, we have no idea how much he is draining. We really aren't clear on how they plan to proceed. We were told yesterday that he can wear normal clothes, but because of the drainage issue, we don't want to put nice clothes on him just to get them all yucky, so that is a bummer.

This morning we were told he had a really good night, he slept well and when he was awake he wasn't fussy. Since we have been with him, we've gotten him up and he had some fluids and a cracker. He has been very upset, sad, angry, hurting, and to be honest, I really don't know what is wrong, but he is very off. He's not being himself, and he's very hard to console. He also ended up having more irregular heart beats today. They aren't sure why, but told us that its normal to have irregular beats post op and that they'll keep their eyes on it. They ended up giving Logan morphine in hopes that it'd help calm him down, which it did. He's been sleeping ever since. His heart rate is regular as of right now and we're hoping it won't change again.

I don't think they are planning on making any big changes today with him. Today may just be a rest and relax day after the few big days he had. Maybe it all caught up to him, maybe he's just over being poked, touched and prodded. I'm really not sure, but I hope after he wakes up from his nap, he is his normal self again.



Update within an update:
I came home yesterday to be with Corbin. He was so happy to come home and sleep in his bed. It was really hard to leave especially because Logan was having a hard day. Even on an easy day, its hard not being there. Jake informed me last night that they were able to get the clog out of his chest tube and he dumped a bunch of fluid. It must feel so much better, and I can only imagine that he is in a better mood. I get my updates through Jake while not being there, so the information I have won't be as specific as it used to be until I get back up there. Tomorrow we switch, and Jake will come home for a few days. It works really well doing it like this, but it's just hard being away and not knowing exactly what's going on. So, as I know of right now, not much has changed, they're watching his output from his chest tube and he's still on oxygen, although they are trying to wean him off of it. Fingers crossed we can get rid of that tube too!

As always, thank you to everyone that has shared our story, sent well wishes, prayers and just a message along our journey. We appreciate everyone and everything!

Post Op Day 1

Where did we leave off? Last night Logan remained stable for the most part. He had a few more runs of vtach and low blood pressure. They gave him a medication to help with his arrhythmia and he didn't have any more that were of any concern.

They do morning rounds everyday and it's always nice to be there to hear what their plan is. So, today the plan was to take Logan off of the paralytic, so that he can start to wake up and move around. In doing this they have to find a balance between him being awake and him being comfortable. This took a little while and was hard to see. He would wake up, move around and start to gag, cough and bite on the intubation tube. He was trying to cry or yell but couldn't make any sounds. We comforted him the best we could, and the nurses were quick to give him something to manage the pain and anxiety. He would fall back to sleep pretty quick after given more medication. This happened throughout the day, but they've finally found a good mix of medications to keep him comfortable and sleepy. Although he is intubated, he is initiating his own breaths. The machine kick in for him if he forgets to breath, but for the most part, when we left him tonight he was doing all of the work, which is excellent and a great step in order to get that tube out. (Fingers crossed that it comes out tomorrow!)

They did end up giving him some blood to help with his blood pressure. He has been having a hard time keeping it up, but after the blood this evening he seems to be doing much better. Some medications can have an effect on blood pressure as well, so that is something everyone is watching out for. At the moment though, it is holding steady. Other than that, there is nothing really new. It is all baby steps right now, which is fine. We are following Logan's lead. Letting him show us what he can handle right now. Tomorrow is a new day, he will be getting his chest bandage off, which I am excited to see, and hopefully, extubated! I will update tomorrow.

Also, we had some visitors today!!!!

As always, thank you all for your love, messages, thoughts and prayers! He's doing really well!

Surgery #2

So, our night before surgery didn't go as planned. Logan woke up at 1 am and decided he would not go back to sleep, which is very unusual for him. Needless to say, mommy and daddy were up as well. By 4am an inconsolable, hungry toddler, yelling through the thin walls of the hotel room, we decided we would just pack up and drive around for 2.5 hours before needing to go to the hospital. Logan, of course, fell asleep while we were driving.

We got up to the hospital at 6:30, we brought him down to the OR prep rooms and got him ready. We were greeted by some of the team that would work on him. The anesthesiologist, the nurses and then the surgeon. We kept Logan occupied with bubbles, then he was given a medication to make him relax, and boy did it. He found a stethoscope, which he ABSOLUTELY needed to have and wouldn't give up. As the medication started to hit him he turned into a pile of mush on my lap, but he continued to put the stethoscope in his ears and take them out. When I stood up to hand him over, he was like a wet noodle. It was actually quite comical. He took his stethoscope into surgery with him. Haha.

Thus began our wait. We were updated at 10:30 that opening his chest cavity was taking longer than anticipated due to scar tissue, and once they were done, they'd begin on the heart. We were finally greeted by the surgeon at 3:00. He didn't give the usual thumbs up with a big smile, so I was immediately nervous. Instead, he calmly said that it was a very difficult surgery, but everything went as planned. We were elated! We shook his hand and thanked him about 2938 times. We went outside of the waiting room to wait for him to be wheeled by. Even though we waited almost 8 hours for his surgery to be over, waiting outside for 15 minutes to see him felt like an eternity. Once he came by we gave him a kiss and rubbed his hands, and then proceeded to take him into the Pediatric Cardiology Intensive Care Unit (PCICU). We were told they'd be about 45 minuets to an hour transferring him and all of his wires and tubes to the new bed. We grabbed all of our stuff and checked into the Ronald McDonald House in the meantime.

Finally, after a really long day we were able to see our baby. He was pink. For the first time, in almost his entire life, he was pink. His lips were pink, his nail beds were pink, his little baby toes were pink. It is incredible. He is intubated, sedated and on pain medications to keep him comfortable. Along with about 28 other medications being pumped into him. While we were there, he began to show signs of instability. His blood pressure was very low, and he was going into heart arrhythmia. More specifically, Ventricular Tachycardia. (Vtach) When this happens, the ventricles are squeezing, but nothing is being circulated. It is a very dangerous arrhythmia to have. So, everyone was on their toes trying to stop the spurts of Vtach and get his blood pressure to increase. It was hard to watch, I was so afraid that the Vtach would last too long and they'd need a crash cart. Luckily, that never happened, and about an hour later they were able to get him stable. He is still having bouts of low blood pressure and arrhythmia, but as of right now, they are not concerned. His heart needs to relearn how to pump properly and efficiently, and sometimes it has a few hiccups along the way. He is peeing, which is always great. At first, there was a large amount of blood in his urine, but now it is beautifully clear. There is no talk of taking him off the ventilator any time soon as they want to keep him stable longer and give his body a chance to rest after his long day.

 LOOK AT THESE PINK FINGERNAIL BEDS!!!! JUST LOOK AT THEM!!! I can't get over it!

So, as of right now, he is stable with a few hiccups, which is to be expected. We will learn more tomorrow as the doctors go through and discuss their plans for him. I am probably forgetting a few things, but I have been up for almost 24 hours and I am about ready to fall over. We want to thank everyone for the support, love and encouragement. The messages, the texts, everything has helped us through our day. We love you all and we are so happy to have such an amazing base of friends and family.

Here We Go. #2.

We had been postponed twice waiting for beds to open up, and when we finally got the phone call, asking if we could come tomorrow, I almost couldn't believe it. I certainly hadn't wrapped my mind around it yet. Wow, it was happening. I've been waiting and waiting to get this phone call and get this ball rolling. Now that we are going, I don't want too!

Luckily enough, my mother in law was available to take Corbin for a few days while Jake and I concentrate on Logan. We dropped him off this morning. I explained to him that he was going to stay with Nana for a couple of days while Mommy and Daddy went to the doctors with Logan. I told him that the doctors were going to fix Logan's heart so he could run really fast. He's still to little to understand what's going on. He was more excited that he was staying the night with Nana to even really care what we were doing. This was them saying goodbye to each other, and if this picture doesn't make you say "aww" then there is something wrong with you.

We got to the hospital at 1:30 for pre-admission testing. Logan has freshly come into the "stranger danger" phase, which isn't much fun when people need to put their hands on him. He didn't do too bad. The doctors are really great around here and I have to remind myself that they deal with this kind of thing all of the time. He had an EKG, his 02 struggled to get to 71, blood draws and an X-ray. This picture was taken after we were all done. He was not impressed. At. All. 

So, the plan is to close the two holes in his heart, and place a conduit from his left ventricle to his lungs. They are not doing whats called, a double switch, which would correct the pumping of his heart. (Right now, the right ventricle is pumping to his body and his left ventricle is pumping to his lungs, the heart muscles are not built to pump this way.) Unfortunately, this double switch procedure is very high risk, and at this point, not something we should pursue, as his little body more than likely couldn't handle the change. This leaves us in the position that his heart will continue to beat inappropriately, or opposite, if you will. Eventually, his right ventricle will become enlarged due to the amount of extra workload it has taken on, and it will begin to fail. At that time, he will be a candidate for a heart transplant. This heart failure won't happen over night, but possibly 20 years from now. We will address a double switch sometime when it is more appropriate to avoid needing a transplant, but more on that when we get to that bridge. 

We were also informed that Logan's defects put him at a higher risk for heart arrhythmia's, because of this, usually a pace maker is needed. We were told that there is a good possibility that the surgeon will be putting in pacemaker wires for future use while he is inside. This took us by surprise as we had never been told that he'd even be at risk for needing a pacemaker let alone how soon he may need one. We are still digesting all of this information. As always, things could change in the OR. The surgeon could decide to do something different that what has been planned. We won't know anything 100% until tomorrow after surgery.

Surgery is at 7:30 am, we have to be there at 6:30, poor little Logan can't have anything to eat, which may in fact, be the hardest part of the whole morning. Haha. He will be very mad that he cannot eat. They expect the surgery to take 5-7 hours, and recovery to be 2-3 weeks. They are going to try to get us home by Christmas, but really, the ball will be in Logan's court. If he needs time, he needs the time. We cannot rush him. 

As I type this, he is sound asleep in his fancy hotel grade pack and play bed. We are hoping we can get as good of a nights sleep as possible, we will need the rest. Thank you all, as always, for the love, support and encouragement. We couldn't do this without you all. I will post another update after surgery, once we have all the information. 

Special thank you to Carol and my mom for helping take care of Corbin, the house and the cats while we are away. 

Some extra pictures of Logan enjoying hotel life. 

Postponed

The surgery has officially been postponed. We should be heading to the hospital now and getting ready for surgery tomorrow. Due to the fact that there are a lack of beds, Logan's surgery had to be pushed back. As frustrating as it is for us, we understand that this is the way it works. There are sicker kids that need those beds, and for that, we cannot be mad. 

Now, we are basically "on call". We do not have another set date, we just wait until we get a call that there is an open bed, and we go. The scheduler I spoke with informed me that the surgeon is going out of town next week, so the earliest we may possibly get a phone call would be the week of the 14th. 

It's hard to mentally prepare for something like this, and it's even harder to have that preparation fall to pieces. Now, without having a date, we never know when we will have to drop everything and go. I honestly, feel like at this point, its better. Rather than being given another date to look forward to, and then to have this happen again. Now, I know when I see my phone right with that lovely area code, I know it's time. 

So, our bags are packed. We will be ready when they call. I cannot live in this bubble anymore, so I can only hope that Logan is in good health (no colds, or fevers) when we get the call. I will update more whenever I know anything, but as of right now, I won't know anything until I get a phone call that a bed is open. 

As always, thank you all for your continued love and support!

Second Surgery

I began counting down the days once we hit October. I try not too, but it just happens. The closer it gets, the faster the days go by. I dwell in silence about the thoughts that are constantly running through my head. Sometimes my pessimism really gets the better of me. Logan, on the other hand, is as happy as can be. The happiest kid I have ever met. He's doing well, considering. He had his last checkup last week at the cardiologist, his O2 was low, 72-78, alarming to me, but not to the doctors. He had an echo, which he did not like. This was the first time he wasn't calm and it was really hard on both of us. I had to hold him while they got all of their pictures of his heart. The doctor said he is ready.

So, this is what they are going to do; They will close off his current shunt. They will not remove it because it is not necessary, so it will stay in, just be sutured shut. They will then run a conduit, basically a tube, from his right ventricle to his lungs. This conduit will act as the pulmonary vein, bringing de-oxygenated blood from the heart, to the lungs. They will close the hole between his ventricles and the hole between his atrium's. This will be a big change for him and how his body pumps his blood. His body will have to relearn how to circulate appropriately. Besides it being taxing on his circulatory system, it is a riskier (as they all are) surgery because of the way Logan's heart is formed. His left ventricle is on the right side of his heart, it is essentially twisted, so the conduit has to go further to reach the lungs. This can present a few problems, the conduit has more of a chance of becoming compressed by surrounding organs, or general pressure within his chest cavity or even his ribs. It is also a higher risk of clots just do to the sheer size of the conduit. He will have a non mechanical valve in the conduit as blood is leaving his ventricle. I am unsure if it will be a bovine valve or a synthetic valve. We will find out. So, that is it, in a nutshell.

Seems simple enough, right. Hah.

One of the hardest parts of this ordeal, besides the surgery, is the bubble you surround yourself and your heart kid in. You try so hard to avoid any sickness weeks before surgery day. This means, staying home when you're invited out, Not going to public play places, sanitizing your home 3 times a day. (Not really, but you get my point) It's hard. Going to the store is the highlight of my day. If he gets sick, they will reschedule his surgery. It isn't the end of the world, but when you mentally prepare yourself for something like this and then you have to prepare yourself for a second time, it really takes a toll. We have our life scheduled around this surgery, and if it is rescheduled its just an added stress to change everything again. Luckily, we have amazing friends and family that have offered to help us out during our journey. We cannot thank them all enough for their love and support.

We are expecting a call on Friday to confirm his surgery. There is a chance that they will not have a bed for him due to unexpected emergency cases. So, yet again, another unknown. We can only cross our fingers that everything works out and goes according to plan. I am impatiently, anxiously awaiting that phone call.

So, that's it. That's the update I have. I will write again when we get all checked in. Thank you all for your continued thoughts and prayers.

365 days

365 days. 1 full year. We have had Logan in our lives. It hasn't been easy. Nobody could promise us that he'd still be here. There were some nights that I was afraid to let him fall asleep, fearing that he wouldn't wake up. Other nights, I cried myself to sleep due to the uncertainty of his future. This was a hard year.

Here he is. 1 year old. So amazingly perfect, yet so devastatingly broken. He's my healthy sick kid. Which, is a different kind of hard. Not to compare it to the other families we have had the pleasure of knowing. We could never discredit their hardship, it is real, and it is raw. We live in constant uncertainty. "He looks so healthy!". We hear it all the time. It almost gives us a sense of false hope. As if nothing could go wrong, because "he looks so healthy". Sometimes I feel as if because he "looks" so healthy, his health isn't taken as seriously as it should be. When his 02 has dropped, but he still maintains a decent skin pigment, it gets overlooked. He was pink for the majority of the first year of his life. He was blessed with his father's olive skin tone. I remember the first time I saw him turn blue. The first time that it really punched me in the gut that he is sick, and he will always be sick. The first time I was asked if he had something blue to eat, and I had to explain that he didn't but he has poor circulation (which is much easier and quicker to say than to get into the details). That was a comment we got a lot. I held my emotions, but it never gets easier to hear. It was hard to know that my "healthy" kid was starting to show signs of not being so healthy.

 Although our road has been bumpy with an occasional detour, we have had a relatively smooth ride. That terrifies me. I feel as if just around the bend we are going to loose control and veer off the road, onto some uncharted territory.

There is this voice, which I cannot rid myself of. It tells me, more often than I'd like to admit, that our luck is going to run out. When it gets bad, its going to get really bad. Maybe that's my pessimism talking, maybe that's the part of me that knows how life goes. I don't know, but I can't help to think that we aren't always going to have it this "easy".

That voice torments me. It tells me at night, when he is being fussy and inconsolable, when I get frustrated that I need to be patient and hold him close because he may not be here much longer. When I see him laughing at his brother, I hear that voice. "Cherish this moment, it may be the last". I know that may be hard for some of you to comprehend, or maybe you think I am being dramatic, but this is my reality.  He comes with no guarantees. Every time we get to enjoy a milestone that he accomplishes, or see him play with his brother and my heart is about to burst, I remember that he, even though he doesn't look it, is very fragile. Every day I have with him, I remind myself that we are not promised any of this.

I don't really know what I am trying to say, or where this blog post is going. Maybe it's just to let everyone know that this is scary. We may look like we have it all together, and that it isn't hard, but thats not true. We have no idea what we are doing. We don't know how to take care of a medically complex child whom looks like the picture of health. We are just winging it and hoping for the best.

I wish every single day and night that Logan didn't have this disease. I wish that I could give him my heart and know that he'd never have to undergo another surgery again. A surgery that will never actually fix him, but only get him through to the next surgery.  I then realize that wishing away his ailment, means wishing him away. That thought is unbearable. I cannot imagine not having him, or who he would be if he didn't have this scar on his chest. If keeping him means keeping his unpredictable future, then so be it. Maybe that's selfish.

We have learned a lot this year, a lot about ourselves, our marriage, our family and our priorities. Our ordinary world was turned upside down 365 days ago, but we are figuring it out. We don't take anything for granted anymore. We have learned what is important to us, and what we value most. We have learned to love deeper than I have ever imagined. We have a long road ahead of us, and it is scary to not know what our future holds. We may not look it, and we will never ever admit it, but we are scared. Jake is my rock, and I am his, and because of that, we stay strong for each other, when in reality we both just want to break down some days.

We both appreciate beyond words all of the love and support our friends, families and even strangers have given us in regards to Logan. It really helps keep our heads above water, knowing we have someone to turn to when things get rough. So, thank you. Thank you for always being there when we needed to talk. Thank you for understanding when we didn't want to talk. Thank you for the hugs, the positivity, the prayers, the thoughts. Just knowing how many people were thinking and praying for Logan during his last surgery was overwhelming and just absolutely incredible. Again, thank you. As always, a huge thank you to my husband. I couldn't do any of this without you by my side. I could write a book about how much I appreciate you, but I hope that I show you everyday the love I have for you and how thankful I am for what you have given us. You are an incredible father. I love you so much.

In closing, I can only wish for another hundred years for Logan, but for now, we will take it one year at a time. His next year of life will be just as hard if not harder than his last. We are staying strong, we are holding him tight, and we are enjoying every moment we can as a family. Our perfect family.

Heart Cath

What is a heart catheterization? Well, in laymen terms, the doctors sedated Logan so they could put a catheter into an artery in his groin and push it up to his heart, they also put one in a vein in the same location, up to the heart. They are able to get very accurate readings of blood oxygen levels, pressures and they are able to see the inner workings of his heart as they take X-ray pictures. They also push a dye through the catheters, which shows where blood is or is not flowing. It gives the doctors a better dynamic of the heart in all of its complexities.

We had to be there at 6:45am, so we woke Logan up, loaded him in the car and headed up. We got all checked in, changed him into his little tiny hospital gown, which was surprisingly super cute, and he played in the hospital crib. The nurse put on a numbing cream on each side of his groin, gave him a dose of benydryl and a shot of morphine. It was only about 20 minutes until we were on our way down to the Cath lab. I chose to carry Logan down, and the nurses pushed the empty crib. It seemed like we walked forever, and we did. It was a very long walk from where we started. Normally, after carrying Logan for more than 3 minutes it starts to take a toll on your arms and back, that day, I felt like I could have carried him forever. We got to the door and we had to part ways, the meds were kicking in at this point and he was getting drowsy. We gave him kisses and handed him over.

There was a small waiting room separate from the more public waiting room. We were all alone in there, it was nice and cozy. We waited until the doctor came to speak with us before he preformed the procedure. He explained what he was doing (as I explained above) and told us that as long as everything goes as planned, it wouldn't take more than an hour or two. Then we would get to see the pictures and videos that they took, and he would explain their findings to us. Once he left, we went for a short walk down the block to get some breakfast, a bagel and coffee. We returned and waited.

10 o'clock rolled around and the doctor emerged from the cath lab, he said that Logan did great (of course!) and that we could follow him to see the pictures. This is where we obtained a lot of information, most of which I have forgotten because I was overwhelmed. What I did retain was this short summary of what we were told.

His heart is a little more complex than we originally thought. The dextrocardia really complicates the dynamics of his heart, and it also makes "corrective" surgery even harder. Just to remind you, Logan's heart pumps opposite of how it should. His right ventricle is pumping to his body and his left, to his lungs. The heart was not built to pump like this, and eventually (years from now) it will fail because the right ventricle will become to weak to keep up with the pressure needed to supply his body. The main goal, eventually, would be to re-route his heart so that the left ventricle (the correct ventricle) would pump to the body. In order to do this, they would need to place a conduit from the aorta to the left ventricle, and plumb the right ventricle differently to pump to the lungs. They now, are not sure if they will be able to make this happen because the conduit would be so long, that it wouldn't be a stable structure spanning across the heart. It is still an option at the moment, though. He (the doctor) also mentioned simply replacing the shunt at his next surgery and letting him grow bigger, and re-evaluating the heart in a few years. The doctor said there was a possibility of making Logan into a single ventricle patient, which would basically bypass the right ventricle all together and basically deeming it useless. I will fight tooth and nail to not let this happen. The doctor d

oesn't seem to think that it is something that would happen because he does in fact have 4 working chambers, but it is a possibility. I asked about long term prognosis, and of course, everything is hypothetical, but Logan will more than likely need a heart transplant at some point in his life. Depending on what steps they take in these next few years will determine how long his heart will carry him. Could be 20 years, could be 60. We don't know.

So, they now have to take all of these findings, bring it to a conference with the surgeon and other cardiologists and discuss what they can do, what they will do, and when they want to do it. We will not know anything for another 4-6 weeks. The doctor seems to think that his next surgery will be between 2-5 months. Every CHD is complex, but the dextrocardia really puts a spin (literally) on things and makes everything so much more complicated.

It took me a while to get this updated, and I know I have forgotten some information, but that is the jist of it for anyone following our story. As always, we appreciate your support and love during our journey.

Here We Go.

It's been a while since I updated, so let me bring you up to speed. Luckily, nothing too exciting has gone on between my last update and now. Logan was sick in March, and we ended up at the cardiologists to make sure it wasn't anything respiratory, and it wasn't, thankfully. While at that appointment, we made another appointment, basically one to check up on him after his cold subsided, and before our one year appointment in July. We went to the follow up appointment on Friday.

Lately, Logan has learned how to crawl, which is just wonderful, he also pulls himself up and walks along furniture. He does amazing, and he IS amazing. Because of him moving more, he exerts more energy, therefore, needing to breathe faster to compensate for his already low oxygen levels. This in turn, makes him blue. His lips turn blue/purple, and his extremities get purple or ashy. Seeing this really brought it back for us. It is now in our face everyday, that our amazing boy, isn't as healthy as we pretend him to be. Its kind of like an out of sight, out of mind type of thing. It's no longer out of sight. So, of course, this has been a concern of ours. I planned on bringing it up at his appointment.

We arrive at the appointment, they do the routine check in, EKG,blood pressure, O2 levels, etc. As soon as they tried to obtain his o2 saturation level, I knew it wasn't going to be a quick appointment. Logan's o2 sat. is typically in the high 80's. 85-89. His number that popped up on Friday was 73. It fluctuated between 73-84. The doctors then ordered an Echo of his heart. Once this was completed, I was informed that his shunt, is in fact, becoming too small for him.

Logan weighs 24.5 lbs. He is in the 97% for weight amongst kids his age. Our doctor made sense of it to me like this, he is the size of an 18 month old. They need to look at him, and make their decisions based on that fact, and the fact that his heart is working as if he is 18 months old. We were told that he would make it past his first birthday before needing his next surgery, but when you think about it with this logic, his body is functioning like that of a year and a half old. All of this leads to the plan that it is time to move forward.

It is time to start planning for his next surgery. He will be going in on the 27 for a heart catheterization, where he is sedated and they insert a catheter into his artery in his thigh and run it up to his heart where it will take specific measurements of pressure, o2 levels, etc. He will also have an angiogram, where they insert a dye into his heart and use an x-ray camera to record the blood flow. This will give them and the surgeon a better idea of how his heart has grown and help them decide where they want to go from here. We were told it will go one of two ways, either he will go in, and only have his shunt replaced, or he will go in, have the shunt replaced, and they will continue with the big surgery. We will not know what their decision is until they have their conference after the heart cath is done.

I am assuming we will be back for surgery within the next couple of months. I was really looking forward to having his birthday at home, and I know we don't know for sure what is going on, but I have a feeling we won't be able to.

So, here we are and here we go.

Happy New Year!

We haven't updated recently, because not much has gone on. Logan has had a cold for what seems like forever, and I have brought him to the doctors and urgent care more than I'd like to admit. I'm learning now, to stop being so anxious about it, and recognize the more serious signs of when I need to worry vs. standing over his bed while he sleeps when hes congested. It's still hard not to get nervous, but I guess that comes with the territory.

Today was our 6 month checkup. When we left the hospital we were told that Logan would have another surgery before he was 1 due to the fact that he'd outgrown his shunt and need a replacement. So, today was a big day, would we get a surgery date? How soon would it be?

Logan did great at his appointment. He tolerated the many blood pressures they took, he stayed still for the EKG, and he did as good as he could for the echocardiogram. Once they were done with all of their tests we went back to our room, where Logan decided to take a nap, and waited for the doctor. Once he came him, he did a routine check of Logan, listened to his heart, checked his skin, and anything else he could do while Logan slept. The doctor then went to look at the pictures from the echo. We waited.

He returned and said that everything looked great. Better than great. Logan is doing remarkably, in all aspects. We were told we were good for another 6 months and they would check again. The shunt that was put it was big to begin with, so Logan has grown into it, but not out of it yet. Our idea of having another surgery within his first year is now gone. (Unless something drastic changes)

The doctor seemed astounded with how well he is, and how good he looks. He said that the next open heart surgery is a big one, (It scares me when they say that) and that they want Logan to be as big as possible before they do it. So, they will let him grow as much as they can before even thinking about surgery. The doctor suggested we could be pushing 2 years before the next surgery.

The next procedure is called the Rastelli Procedure. I haven't done much reading on it yet, nor do I want to. I plan on enjoying my time with Logan until I really need to concentrate on the next surgery. I don't want to get too worked up yet, haha. So, we have a "healthy", happy baby, and we are going to enjoy the next 6 months of him achieving new milestones and becoming mobile. Yikes!

(Here's a picture of him being a superman ninja turtle, and when he had a small snack break from the echo)

2 months!

Wow. 2 months old. We have received letters and cards from near and far regarding our little heart warrior, it's just amazing how many people we have reached!

I haven't updated lately because there hasn't been much to report on. No news is good news! He just got home from his 2 month appointment. He is 13.1 lbs and 23.5 inches long. He is doing great! He eats a lot, and sleep great. He's starting to be more alert now, which is fun, and he smiles so big it makes my heart melt.

Corbin loves him and he's a great big brother. He still has his days when he forgets he's not an only child anymore, haha. All in all, everything is on track. Logan is a healthy little guy, if you didn't know about his issues you'd think he was a perfectly healthy baby. We couldn't be happier! Thank you all again for all of your thoughts and prayers! We will update when we have anything new to mention. Take care!

Cardiology Appointment

Today was Logans first cardiologist appointment since coming home. He did excellent.

His sats were 85% which is right where they want them. His blood pressure was great and his lungs sounded perfect. We were told we could discontinue his Lasix medication, as he shouldn't need it anymore. The doctor was thrilled with how good he looks.

Unfortunately at this time it is too early to get an idea of what is next. The doctor mentioned a procedure called 'The Glenn Procedure" which I have read about previously. It is another shunt procedure, and not a permanent fix. But whether or not they will do it is just a theory right now.

They expect that his next surgery will be within 8-10 months. We go back in 4 months for another checkup. Everyone seems very pleased with his progress. He just needs to gain weight now!

I also wanted to add that we welcome visitors! We just ask that if you or your kids are sick that you wait until you're feeling better. A simple common cold can land Logan in the hospital rather quickly. Thank you in advance.

Welcome home!

Ah, it's so good to be home and all together again! Logan has been doing great and Corbin is adjusting, sort of. Haha. Logan went to the doctors yesterday and will go back next week. They really want to make sure he is gaining weight. He has been doing very well with eating, there are still times he struggles but otherwise he's improving. He is on Lasix, a medication to help get rid of excess fluid. This is to help prevent congestive heart failure. Aspirin and a multivitamin. So the medication regime isn't bad at all.

He has a 24/7 on call nurse that works in the area, so it's comforting to know there is someone close by that can come check him out if we have any concerns that aren't 9-1-1 worthy. She will come to the house once a week just to check on him.

His chest incision looks good. There is no longer a bandage on it.
We still have to wait to give him a bath but I can't wait to see if he likes the water. Corbin loved it, and still does.

He has an appointment with the cardiologists on wednesday. I'm not sure exactly what they will be doing, but I'm sure and echocardiogram and hopefully we'll get insight as to what the future holds. I will update once we have that appt. Otherwise, all is well. We are so grateful to have him home.

4 weeks

Is how long Logan has been looking at hospital walls. 4 weeks in a hospital bed, 4 weeks of us eating hospital food, 4 weeks of going back and forth from home to the hospital and 4 weeks of waiting.

We can finally see the light at the end. The doctor told me yesterday that she wants us out of here by Friday. His output from his chest tube, which we have been struggling with, was finally under 25. If he can keep it low, his tube will come out. Then all we have to do is work on eating.

They took out his NG tube and are expecting him to eat and gain weight on his own. This puts alot of pressure on him and us. He has a hard time eating and it can be very frustrating. It is amazing, after all he has been through, this is what we are having trouble with. Something as "easy" as eating. He has trouble staying awake to eat, and when he's awake he sometimes coughs because he gets ahead of himself. We have to take our time because he doesn't know how to suck and swallow and breath at the right times. He breathes fast because of his heart issues and it makes it hard for him to catch his breath sometimes. He has come a long way, but it is still a slow process when we feed him. He has to work really hard to eat, which makes him tired, and then he falls asleep. When he had the NG tube, it wasn't such an issue because we knew whatever he didn't eat,  we would just give it to him through the tube..but we don't have that option anymore. The only way to get it into him is for him to eat. It's tough. Who would have thought this would be one of the hardest parts?...

I am so excited to come home, I'm terrified, but excited. I am going to miss our friends we have made at the hospital and their little heart warriors. I am going to miss having a doctor around the corner to answer my questions. But I cannot wait for Corbin and Logan to begin their bond. I cannot wait for the craziness to ensue in our household.

Just a quick shout out to one couple in particular, Trish, her husband Aaron and their heart warrior Zander. We are so happy to have met you and be a part of your journey even though it was only for a short time. It was nice to be able to forget about what we were all going through and visit and laugh with you guys at night before bed. You two are incredible and you inspire me.

We are so thankful to have had such an uneventful recovery, it isn't typical. I can only hope this is how all of his recoveries will be. We were told we will be back in 6-8 months for his next open heart surgery. So, as happy as we are that this is over, before we know it, we will be starting all over again. It's hard to think about. In the meantime, we will give Logan as much love as we possibly can. Every moment with him is especially special.

I will keep you all posted when we are busting out of the joint. Fingers crossed for Friday!

Room Air

Logan is now off of supplemental oxygen and doing just fine keeping his O2 levels where they should be. Someties when he gets upset they get a little low, but that is to be expected. We have been working on feeding him with bottles, and he has good days and bad. Some days he will eat all of the bottle and others he really struggles and gets too upset. They have been fortifying my breastmilk with more calories so that he will gain weight.

The speech therapist helped Jake with some pointers on how to feed Logan. We lay him on his side with his feet towards us and his head away, and when he eats we have to count 10 gulps and stop so that he can catch his breath. This seems to work really well. Our only issue is that he falls asleep in the middle of eating and he is very hard to keep away. Even with the old cold wet washcloth trick!

We have also been moved out of the intensive care unit and we are in the new part of the Childrens Hospital. We have a nice big room.

Last night when we came to feed Logan the nurse was about to change his dressings, so we waited and watched. When he changed his dressing for the chest tube we noticed that it had come out. The tube is held in place by one stitch. The stitch had pulled out of the skin and was about an inch away from where it should be. This causes major concern because they worry about air getting into his chest cavity. So, with it being a Sunday and 10pm, it was a little hectic trying to get ahold of all of the appropriate people. He needed a chest x-ray to check the tubes placement, which ended up being just fine, and there was no air in his chest cavity, so they decided to just stitch it back in where it was. I wish they could have just taken it out, but his drainage has still been a little too high for them to remove it. He is a pretty tough guy, he took the stitch with no local anesthetic and didnt make a peep. Tough guy.

This morning we are going to continue with his feeds, and we were told we have to do a car seat trial. We have to put him in our car seat for an hour and make sure his airway stays open and his chubby little head doesnt fall forward too much to close off his airway. I feel like we are getting closer and closer to coming home. We have to get the chest tube out in order for that to be a possibilty, so hopefully just a few more days!! Hes doing great!

Jake wanted me to add that we can see the helicopter pad from our room. :) 

My Superhero

Where to begin, Logan has been doing great, as usual. He was moved into his privte room, which is really nice! They took out his arterial line in his leg because they no longer needed daily blood draws. Before he was moved he was on 100% oxygen at a flow rate of 4. He has been weaning for a few days and is now down to 50% at a flow of 1 and he is maintaining his oxygen levels. They want his o2 saturation levels to be between 75-85, he will never have 100% o2 saturation like most of us do, but thats to be expected. They are happy with his numbers.

Once we were moved we were basically given free reigh over him. We can pick him up whenever we want, we can change his diapers, we can dress him. It is just amazing. It is starting to feel normal, besides the environment. I have been taking full advantage of these opportunities. Yesterday we had a nurse whom I hadnt met before, and I was holding Logan and she asked if I wanted to do skin to skin, which I had never done, and I was a little hesitant, but she insisted. So, we did. I took my top off and we stripped him down. She said, if he looks like he wants to breastfeed, you can try. I was blown away, I was like.... WHAT?! So, we gave it a shot. At first he just kept getting frustrated, he would latch and then let go. Eventually we gave up and just let him lay on me, the nurse left. Logan began rooting again so I gave it another shot, and he latched!! He breastfed for about a minute, maybe 2. It wasnt long, but it was incredible. I didnt even think to ask about breastfeeding him, it never even crossed my mind. I am so thankful for that nurse.

He still has an NG tube, and as of this morning they have stopped feeds for 8 hours, and we are to offer him food in a bottle or by breast, to see how he does. Theyre hope is that by stopping feeds he will feel the sensation of emptiness, and want to eat in a sitting. They are going to offer him a bottle at nighttime, but at during those hours, whatever he doesnt eat, will be put in his NG tube.

They took him off of his EKG monitor, they are no longer checking his heart rate or respirations. The only thing on the monitor is his o2 saturation level. He still has his chest tube for drainage. We were told his output has to be below 20 for 24 hours before it will come out and it is typically one of the last things to come out. The doctor said he is at 30 right now, so itll be a few more days.

I couldnt be happier, he is amazing. I am so proud of how strong he is. All of these heart babies are incredible. Theyre super heros!

Jake and Corbin are coming up today. Itll be nice now that we are in a private room, Corbin wont have AS much to get into. My plan is to stay here as long as possible with Corbin before we have to go home. He can only handle being here for a few days, but we will see what happens. Its not easy to keep him content, especially in a hospital setting, and its really no place for him to be hanging out in.

Thats about all I have for now. We are going to work on feeding and wean off the oxygen, once thats done and they are happy, I cant see why we couldnt go home. I am starting to see the light at the end of the tunnel.

Reunited

It feels so good to be back up here with Logan. Oh, and Jake too. ;)

Logan is doing well. He's made a lot of progress while I was away. When I left he was on 10 different fluids and medications and drips, now, he has 2. He is no longer on any heart medication and the fluid he is getting is just supplementing for his electrolytes and calories. He has the NG tube still because he doesn't tolerate a bottle yet. He has had trouble with his respirations, he breathes too fast, especially when he's upset, but it is too hard for him to suck, swallow and breathe all at the same time and he gets frustrated which only makes things worse. So we are sticking to the NG tube until they can figure out how to get his breathing under control.

Some of the reason for his rapid breathing is that part of his upper right lobe of his lung is collapsed. (This isn't new, I must have just forgotten to add it in my other posts) they do what is called a chest BT, where they take a small pocket mask, one you'd use to put over the baby's mouth and nose to create a seal for a bag to push oxygen, and they cup it in their hand and basicially, for lack of a better term, beat his chest and back. This helps to break up any mucus and hopefully open up the alveoli. They have been doing this for about a week now and he is slowly getting better.

Not much has changed since I got here yesterday. He's kind of at a stand still but they took out the IV line that was in his neck as they weren't using it anymore and didn't need it. He looks so much more comfortable. They are talking about taking the arterial line out of his leg and just replacing it with what they call a PICC line. They will use the PICC line to draw blood instead of having to poke him everytime. He also has an IV in his arm incase they need to give him anything, it's mainly just there for precaution. Once he gets the arterial line out of his leg he can wear clothes!! I brought a few outfits for him and I can't wait for him to try them on.

He was upgraded from the small NICU incubator bed to a fancy little crib. He likes it.

His little voice is coarse and raspy when he tries to cry or scream because of the tube he had. Poor buddy. All in all we are very happy with his progress and even though it has slowed down a bit it is okay. We are on Logan time and he can take whatever he needs. He has blown us away with how great he's done thus far and if he wants to take a break so be it.

We will wait.

I had to say goodbye to Jake today as he needed to go home and be with Corbin. It's hard to say goodbye and be all alone, but in a few months we will look back and it will just be a memory.