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.

Great strides

As you know I am home with Corbin. He is doing great being back home. I'm managing but it's hard to be away. Logan is doing great!  They removed his wound vacuum early because they say it was healed up just fine. I am ecstatic but I saw a picture that I will share and I am worried about the top of his incision being very far apart still and resulting in a large scar. (If a scar is all I'm worried about right now, we're doing good.) He is off 2 of the major medications for his heart and he is managing just fine without them. He is weaned down to 40% on oxygen and they have been weaning his nitric over the last two days. He's down to 4% now. Going from 5% to 0 is the trickiest they say. So they lower it 1% every hour. But once he is off the nitric and keeping his o2 saturation up on his own he can be taken off the ventilator. They are shooting for Sunday. We are very excited. They put in a nasal-gastric (ng) tube so he can start eating. They give him small amounts of my breastmilk every 3 hours. Big big strides for my little guy and he is doing better than I ever thought possible. I thought for sure we'd have a set back or two already but he's too tough. My updates aren't as specific because I am not there getting all the information myself and I have to rely on my wonderful husband to keep me updated. What I know, you know. If anything new or exciting happens, you'll hear about it. Thank you all again for your t&p, well wishes and sharing our story.

Adjusting

We are all still adjusting to our new lives as heart parents. Logan has been doing great! He has his ups and downs throughout the day, but he somehow always comes out ahead of the game. He has had some issues with high blood pressure (Hypertension) and the nurses are unsure of why his numbers spike randomly throughout the day, but so far he has been able to calm himself down without any intervention. They are going to try to wean him off of the breathing tube, but in order to do that they first have to wean him down to 40% oxygen air and then wean him completely off the nitrate gas. Nitrate gas helps bind oxygen to his blood cells, so far he has needed a little boost of nitrate in order to keep his O2 saturation's up where they should be.We are hoping that he will be off the breathing tube within the next few days. That is the only thing holding us back from holding him. Once the tube is gone, we can hold him as much as we'd like. I cannot wait to get him back in my arms.  He is a sweaty little boy, just like his big brother. The nurses all comment on how his head will get all sweaty but his body temperature is normal. I have reassured them that I just make sweaty boys apparently.

I came back home today with Corbin. It was probably the second/third hardest thing I have done within the last month.(Handing my child over to a surgeon and birth) I thought it would be easy, but I was a mess. We are still trying to find a balance between both of our children. Corbin did great adjusting to being in a new place at the Ronald McDonald house, but he is so busy, and there wasn't as much for him to do in Rochester as we initially thought. After a few days, he was getting sick of the same old thing. He would whine and cry when we would take him to our room in the Ronald McDonald house. It was hard for Jake and I to divide our time with Logan and Corbin. Only having one vehicle with us made it that much harder and a hospital isn't necessarily a place for a toddler to hang out in for hours at a time. So we decided that we needed to at least try something different and see if it works better. Now I can focus on Corbin at home and Jake can dedicate his time to Logan. We will switch in a few days. It's hard to be away, harder than I ever thought, but Corbin needs us/me too. We both agree that he was ready to come home.

Tomorrow is a new day, Logan is doing great. We can only take it day by day. We are on his time. There will be set backs, we don't know what they will be yet, but they will happen. We can only hope they aren't serious. If they are, we will deal with it and we will help him fight. He has a lot of supporters, and again, we can't thank you all enough for your thoughts and prayers. He's a strong boy and we are all fighting for him.

Closed up

Logan had his chest closure procedure done today. He did great. The doctors are all impressed at how well he is tolerating everything. And so are we. He has a wound vacuum over his incision because the skin was too tight to completely close it, the wound vacuum will help it heal and close, but he will need it on for a week or two depending on how quickly he heals. His oxygen levels are in the 80s, which is great! The next step is to wean him off of the breathing machine. He is off the paralytic so we are able to see him move around and he can open his eyes. They are a little wobbly because of the pain medicine but we know he knows we are there. He's got big brown eyes just like big brother and daddy.

We are so happy that this is over with and now we can move on. Every step forward he makes from this point on is a step closer to going home. He will be 2 weeks tomorrow. It's been the longest two weeks of my life. Corbin being here certainly makes the days go by fast, but we are starting to find a rhythm  that works for us all. It's hard, and sometimes stressful, but we are figuring it out. Speaking of Corbin, he finally met his little brother, his future best friend. He didn't really care much, he was more interested in all of the machines and monitors. It was fun though. Soon enough he will figure it out.

So, as of now all is well, he is doing as the doctors expect and isn't causing any trouble. I will update when we hit a new milestone. Thank you all again for all of the support!

Post-op

Logan has been doing great. He is tolerating everything really well. They took him off of his paralytic yesterday to give his brain a little workout and do a neurological check. He is still sedated but he is able to move. He doesn't move much but he moves his legs and arches his back and tries to move his head, but his breathing tube keeps it to one side. He opens his eyes but the sedation makes his eyes roll around. The doctors are pleased with everything. Besides the balancing of all of his fluids and rates, which is normal, all is well.

It's great that he is doing so good, but he's doing all of this with his chest open. The plans are to close his chest tomorrow afternoon and then we start back at square one. We have to go through everything all over again, finding a new balance, he has to adjust to the new pressure of his chest being closed. So as nice as it is that he is doing well, tomorrow will be a reset. Although we are starting all over again at least with his chest closed we know any progress made will be one step closer to going home.

We became members of the Mended Little Hearts organization upon having a baby with CHD. It is a great organization. They hosted and event last night at the rochester zoo. After the zoo was closed it was reopened to MLH members. Anyone that had a child with CHD was welcome to go at no cost. It was amazing, such a nice thing they do for families and children. We got to see all of the animals and had a great dinner. We also got to connect with other families that have gone through or are going through the same struggles. It was nice. It was nice to be out of the hospital, and did I mention our little buddy came with us to stay? He loved the zoo and all the animals, mostly the ducks and birds, because those are so rare...

This weekend has been boring. Tomorrow is a new day, and a new beginning in our journey. The days following tomorrow will be a test of his strength and how well he will tolerate the new change. I hope how well he is doing now is a prerequisite to how well he will do after tomorrow. Fingers are crossed.

Thank you

I just want to take a minute to thank everyone for all of the support and well wishes. It is amazing how many people are following our story and I hope it will reach someone that is about to endure the same situation and they can get some comfort in knowing they are not alone.

I want to thank a few people personally.

Dr. Mahajan (and the ultrasound tech) - our OB. Thank you for questioning one of the many pictures of his heart. If you hadn't caught it we wouldn't have our sweet boy right now. You literally saved his life. If we had not known about this and delivered in oswego by the time his PDA (hole in heart they are born with that needed to stay open for Logan to have oxygenated blood) closed and they realized something was wrong it would have been too late. CPR wouldn't have saved him and he wouldn't have made the transport. We are beyond grateful for you and your team that caught this. I will think of you for years to come, whenever I get to hold my Logan it will be because of you. Thank you.

Mat and Carol, Jakes parents, thank you so much for all of your support and love throughout our journey. Thank you for watching Corbin for us so that we could be together with Logan. Thank you for your continuous help between being in Rochester to help us with Corbin and always being there if we need anything at all. Thank you for letting us use your vehicle to go back and forth, instead of using our second vehicle with no AC. We appreciate everything beyond words and can never thank you enough. Thank you Mat for continuing on working on our addition while we were away. Along with Ryan Turner and Nate Grey.. we cannot tell you how thankful we are that you took time out of your busy lives to help build our house while we weren't even around.

To my mom Sue, thank you for watching Corbin when we needed you too and allowing Jake and I be together with Logan. You have no idea how much it helps us and takes the weight off of our shoulders. Also, thank you for taking care of Kiya for us while we are away. I know she can be a handful sometimes but we are forever grateful that she is somewhere that we don't have to worry about her and we know she is well taken care of. Thank you for all of your love and support throughout our journey.

Amber, where to begin? You are incredible. I know we've thanked you a million times but it will never be enough. You came to us in a time of need and we can never repay you. You took such a stress off of our shoulders words cannot describe our appreciation. It was so nice to know that Corbin was so well taken care of while we were gone. I cannot think of anyone else that would have done what you did. I owe you the world and then some. I love you with all of my heart. You are the greatest friend and person I have ever had the pleasure of meeting.

Syracuse NICU, thank you for taking care of our little Logan before he was transfered to Rochester. You nurses are amazing, each and every one we encountered were professional and empathetic.

Dr. Alfieris, of course we are forever greatful for your steady hands while during surgery. Thank you for getting on your knee and talking to us like human beings. I loved that you called later in the day for an update on how he was doing. It shows that you truly care about your patients. I know he will need future surgeries and I am completely confident in handing him over to you. Just handle him gently, he has half my heart.

Nurses and doctors in the PCICU at Rochester; you are all so incredible. It is just amazing to us how educated you all are and how calm and professional you are in all situations. You really helped my husband and I keep our cool and feel confident that Logan is going to be okay.

To Jacob's work crew, thank you. Your gift was truly unexpected and helped us immensely. We were able to breath easier knowing we had extra help. We were touched by your thoughtfulness and we are forever grateful.

Jake, you are my rock. My everything. I knew we had a solid relationship before this, but now I know nothing can break us. You are an incredible person, friend, husband and especially father. I cannot imagine going through this roller-coaster with anyone but you. Your optimism balances with my pessimism and keeps me grounded. This is one of the hardest things I've ever had to go through and I don't know if I would have been able to without you. I love you so much. I am beyond grateful that I have you by my side and I know I can always count on you. We have the luckiest boys in the world because you are their father. The love in your eyes when you look at them just makes me fall in love with you more and more everyday. Thank you for all you do for us. I could go on and on, but I won't, I will show you everyday how thankful I am for you. For the rest of my days. I love you.

To everyone that has followed and shared our story. Thank you, thank you for spreading awareness of CHD. I have received emails from people all over the country thanking me for my blog and that it has helped them and their upcoming journeys with CHD. I am so happy that I can help people, even if it is just one person, with our story. We will be calling on you all again when we have our next surgery to help us share our story. Thank you so much!

Thank you to everyone else that has said a kind word, checked in on us, made us dinner or just sent a text to say hello. We are overwhelmed with all of the love everyone has shown us. We are forever grateful to have such amazing friends and family. Thank you everyone.

Surgery

What a day! Logan left us at 9 for surgery and we tried to stay busy as long as we could but ended up in the waiting room at 10:45. It seemed like an eternity, but the longer we stayed the more we didn't want to leave incase the doctor came up. Finally, at 12:30 the surgeon appeared and gave us a thumbs up then called us outside. He explained that everything went exactly as expected and now his body just had to get used to a new way of pumping and circulating blood. He said that his pulmonary arteries were angry and had to adjust. He explained that they left his chest open to allow for swelling, which we knew was a posibility. There is a piece of plastic holding his ribs apart and a dressing over his heart.

Everything is up to Logan now.

What a relief! We were excited and happy, like a huge weight was lifted. They brought him by us so we could give him a kiss and then wheeled him back to his room to get him all transferred over. We had to wait a while before we could go see him. More waiting...

It took about an hour and a half before we could go see him. When we did the nurses explained to us what all of his tubes and medications were. It was pretty overwhelming. He gained 12 different medications and fluids just to get rid of one medication. It was hard to see him. He is sedated and paralyzed with tubes and wires and machines surrounding him. We just stood together in silence and stared at him for what seemed like forever. It was so surreal. You can see his heart beating through the dressing on his chest. His skin tone is more pale and he is a little puffy. The nurses say he will get more puffy as the days go on due to all of his fluids.

As happy and relieved as we were about the surgery being over we were swept with more emotions of being scared and worried all over again. The easy part was over, now comes the hard part. It was strange having so many contradicting feelings at once. We are on Logan time now. Everything is up to him and we will wait until he is ready.

As the day went on the nurses and doctors keep a close eye on him and adjust everything as needed. Since he is paralyzed and sedated they need to find the balance with his o2 and blood pressures and chemical levels. They do neuro checks every hour and blood checks every half hour and adjust accordingly. We were just amazed at how incredible these nurses are, even though it is their specialty. As the day went on there weren't many changes. As the doctor said, we want boring.  We want Logan to be as boring as possible. And so far he is complying.

As the night went on we just sat in his room and watched as the nurses did their constant checks. We can't hold him and we can hardly touch him so all we can do is sit and visit with him. He has no idea that we are here right now, due to the medications, but I feel good being here with him.

Today we woke up and we didn't have any phone calls so we assumed everything stayed boring. We came down to see our buddy and sure enough he was doing fine. He had a few dips last night of his o2 stats and his blood pressure but they quickly adjusted his fluids and took care of it. Everything is a balance and it is up to the nurses to make sure everything stays balanced and they've been doing great. Logan is hanging in there and doing as good as he can. The doctor said that she is happy with his progress but we are not out of the woods yet. She said she will feel better tomorrow and even better the next day if he stays this way. She said that they are looking at Monday to close his chest. Once that is done they can work on weaning him off of the breathing tube and we can take steps forward to get him off some of his assitance. Those are all things we look forward too and those are all things that are up to Logan, whenever he is ready we will be ready. His time.

It's hard not to stare at all of his monitors and even harder not to get anxious when the alarms go off, but this is second nature to these nurses and I feel comforted that they are so relaxed and calm about fixing whatever is wrong. We joke that the only way Logan can be sassy is to make his alarms go off. He likes attention. Even though Everytime I hear an alarm I think, this is it, this is when everything goes downhill, he always seems to correct himself and goes back to normal. I hope that it stays that way and he only has these dips every once in a while.

So, as he is doing well we still can't breathe easy, we are optimistic and happy but we know in the back of our minds it could take a turn for the worst at any moment. Until we are in the clear we will take it minute by minute and hour by hour.

Meeting the Team

We went down to  be with Logan this morning before they took him to surgery. He was moved to a pre-op room where we met the anestesiologist. She explained to us how he would be sedated and what machines he would be on, if any. We got to hold him and snuggle him for a while. He was particularly fussy today, but I think its because he hasnt eaten since 10am yesterday. I know id be cranky too. Then we met the surgeon.

Dr. Alfieris. We had heard so many good things about this man and he lived up to our expectations, personality wise. He shook our hands and got down on his knees to talk to us. He explained everthing in laymans terms as to what he is going to do and that we would worry about his other defects at a later time. He also gave us a dose of reality.

1 out of 5 children that have this surgery dont ever make it home. It is a very difficult surgery to recover from. They are changing the phisiology of his body, sometimes chidren, no matter how strong just cant cope. Dr. Alfieris reassured us that he has done this operation many times and his statistics are a bit higher at 1 out of 10. I know he was telling us this to prepare for the worst. The surgery is a cake walk, it is the recovery that is the true test. He said the first 3 days are the hardest and the most telling as far as if a baby has taken to the surgery. He said if we make it to a week, we can breathe easier.  It was a lot to take in, and hard to hear, even though I knew there was a chance of mortality. It was all just so real.

We walked with the team to the exit doors, we kissed our baby boy and off he went. Ill update when we get some news. The Dr. Told us to be in the waiting room at 11:30 and that he should be up at that time to update us.

Transfer

Today we moved from Syracuse Hospital to Rochesters Childrens Hospital. Logan had issues maintaining his oxygen levels throughout the night and was put back on oxygen and his medications were increased. We were reassured that it was more than likely due to his weight increase and his body adjusting to the medication. Rochester ambulace picked him up around 1pm. They packaged him up in a what looked like a little time capsule, and we were off. We met him in his fancy room at 3:30 and we were told he slept the entire way. They had to do all of their prelimonary testing and admission work, so we watched and waited. He is admitted into the Pediatric Cardiac Intensive Care Unit, aka PCICU. He has his own little "room" in the corner of one big room.

We were introduced to many people, none of whom I can remember now. We were told many times what was going to happen, and what to expect. They are going to open his chest and put in a shunt, bypassing the pulmonary artery. We were told how he would look after surgery, which is on a ventilator, with many tubes and wires. He will have a chest tube to drain any fluids, he will have an IV coming from his neck, and his incision could be left open depending on if the surgeon thinks there is too much swelling. He will have a catheter. He will be sedated and under a paralytic so that he doesnt move, for a day or two during the most crucial time of recovery. Even though we know all of this, it will be hard to see him tomorrow. We were told the surgery would take anywhere from 6-8 hours.

I am sure there is a lot I am forgetting, but today was pretty overwhelming and there was a lot to take in. This hospital is beautiful, especially the childrens ward. We are staying at the Ronald McDonald house located inside the hospital and we have already met a few other "heart" moms. We are literally 60 seconds from Logan if he needs us for anything, or if anything goes awry.

It is comforting knowing that he is in a place specifically designed to deal with cardiac cases. Although we loved syracuse hospital and they are fully capable, we were always associated with having a premature baby, because that is typically what they see. Here, the nurses only deal with cardiac patients and this is second nature to them. He couldnt be in a better place and we couldnt feel any more comfortable about it.

It is getting late, and Im sure there is much more I wanted to say, but I will cut it short. We have a big day tomorrow. I will do my best to update after the surgery. Fingers crossed it all goes well. 

Bonding

Logan is NOW on the most minimal amount of assistance possible. By our surprise they took out his arterial IV line, which we were told would not be taken out before surgery. This IV was holding us back from holding him. We were estatic and we couldnt get our hands on him fast enough. We were able to hold him in a rocking chair and feed him. He was only getting 2mL of breast milk yesterday, but they upped him to 10 ml today. Hes a hungry boy!!

I was able to give him a sponge bath tonight. He loved it. Not really. Haha. I did though! Then he got to eat and we all snuggled for a long while. We have yet to see his eye balls, his face is swollen from all the fluids he is on, so its hard for him to get them open, but lately with the decrease of IV fluids he has been getting closer and closer. Today we were able to see that they are dark blue. As excited as I am I know they could change. Hes pretty funny when he sleeps, he makes a lot of faces. His most famous is one that looks like he is whistling. He reminds me so much of Corbin, its scary! We have compared pictures and they look like twins born 16 months apart.

We are excited to have all of this bonding time with Logan because soon it will come to an end. We will have to wait again to hold him and feed him, so we are taking it in as much as we can. The days are long, but they are going by quickly.

I just want to shout out to the most amazing person I have ever had the pleasure of knowing, Amber, my best friend. She flew in from Florida to stay with Corbin for 10 days while we concentrate on Logan. She is just amazing and I cannot imagine what this experience would be like without her here. Her being here has taken so much stress off of our minds that we are forever grateful, and forever in her debt. (I know shes reading this and cringing at every word that is missing an apostrophe, but my keyboard is too difficult to bother with it. I love you!)

The last few days have been momentous for us. It is funny how much you take for granted when you have a new baby. I never took pictures of Corbin eating for the first time, or when we very first held him. These small things that we just figure is normal is what I consider incredible with Logan. You dont realize how great you have it until youre thrown for a loop and end up with something different than expected.

Progress

The last few days have been more than exciting. He has exceeded our expectations, yet again. Yesterday they weaned him from his oxygen, no more nasal cannula!! They also took off an IV that was attatched to his hand. They discontinued one of his Co2 monitors and changed his blood gas checks to every 8 hours, which used to be every 4. The blood gas checks check his Co2 levels. He is on the most minimal amount of assistance he could be on. He is on his prostiglandin, which he will not be able to wean off until after his surgery, as it is keeping his hole open and keeping him alive. He gets an IV of lipids and fluids, along with fats and heparin (a blood thinner). It is great to see him with only a few cords and lines on him. He has become slighly jaundice, but not enough to be concerned about.

Last night when we went to visit we were at the right place at the right time. His nurse was just about to change his bedding, so we were able to assist. I got to hold my baby! I was allowed to lift him up while the nurse changed his blankets. He was fussy until he was in my arms, he settled right down, didn't make a peep and just laid there. It was beyond incredible.

We were informed yesterday that they were going to start feeding him today, just small amounts to make sure his digestive system can handle it, but feeding him, none the less. When we got there today we were told what time they would start and we made sure we were back in time. She had just finished doing his care and had the tiny bottle ready with 2ml of my breast milk in it. She instructed Jake on how to hold him to feed, and he went at it. Logan ate like he has known how to for years. He sucked the bottle dry in a matter of seconds. If he is anything like his big brother is will have quite the appetite! Judging by his performance he certainly does! He is such a sweet boy, we are so in love.

We stayed at the Ronald McDonald house last night, and I cannot say enough good things about it. It is simply an incredible place for families in any type of stressful situation far from home. The room was nicer than some hotels we have stayed in. The bed was the most comfortable bed I have ever slept in. Jake and I slept more last night than we have in the last 3 days. We needed it and it was amazing. We felt renewed and ready for the day. We will be staying there at least one more night before we head to Rochester, which, once we are there we will utilize the R. M. House the whole time.

We came home tonight to be with Corbin. Although we cannot do much for Logan, it is really hard to be away from him. Spending time with Corbin really takes my mind off of things, but once in a while, when he slows down, my mind gets the best of me. I was just pregnant for 9 months, and now I am home, not pregnant, empty handed. It made me feel so empty even though I am surrounded by my beautiful family. He should be home with us, we should be adjusting to the new lifestyle he has yet to bring. Corbin should have met his little brother by now. There is nothing we can do. Despite all of the great news and progress we have with our amazing little heart warrior it is still a hard situation, obviously. We are staying as strong as we can, taking it one day at a time, because that is all we can do.

I can't imagine, or at least I hope, we won't have many more updates until he goes to Rochester. Hopefully he stays stable and continues to eat without any issues and I don't have to fill you in on anything new. Unless it is good, of course. Here are some pictures of our momentous moments.

24 Hours

Logan did great throughout the night! He is holding steady in the 90s for his oxygen levels. The medication that helps keep the hole in his heart open gives him the jitters and makes him warm and irritable, but even when he is fussy he is really easy to soothe. We were told that they are planning on transferring him to Rochester on Wednesday the 29th for his procedure, but it isn't set in stone yet. Hoping to hear more from the doctors and cardiologists today. We are so thankful that he is doing as good as he is, he looks as healthy as a horse, and I'm pretty sure hes the biggest guy in the NICU. We still cant hold him, but the nurse said hopefully within a few days they will take his arterial line out and then we can. I'm looking forward to it! He still has a long road, and I'm sure it will get harder, but as of right now we couldnt be happier with his progress and outcome.

We spoke with the cardiologist, and it is official, they are sending him to Rochester on Wednesday the 29th for surgery on Thursday the 30th. He will be having a shunt procedure, that I thought was "non invasive". It is in fact open heart surgery. He will need to have follow up surgeries in order to replace the shunt as he grows. The most common procedure is called the BT Shunt procedure.

"Blalock-Taussig shunts, or BT shunts, are used for defects that affect the flow of blood from the right ventricle, through the pulmonary artery, and to the lungs. These include pulmonary atresia, pulmonary stenosis, and tricuspid atresia.

The BT shunt is a palliative procedure. It does not correct the defect, but it helps to resolve symptoms until the child is older and/or the defect itself can be repaired. It is also called the blue baby operation.

A shunt is a small tube made out of synthetic material called Gore-Tex. The BT shunt is about 3 to 3.5 cm in diameter. It attaches a section of the aorta to the pulmonary artery, creating a sort of detour. This allows enough blood to pass through the lungs and pick up more oxygen. The shunt relieves any cyanosis or blueness the child might have been experiencing. This is a closed-heart procedure. (This is where I read that it wasn't open heart, but our doctor said otherwise)

The BT shunt mimics the role of the ductus arteriosus. It is often put in place after the ductus closes naturally. Shunts are usually used for four to five months, until the child outgrows them and a second operation or definitive repair is needed."

We asked about other corrective measures for his other defects and what we could expect, and as of right now they are only concerned about getting oxygen to his lungs, rightfully so. He said that once this procedure is done and he is stabalizing on his own they may not have to fix his other issues. Logan will have to rely on his right ventricle to pump blood to his entire body. I was concerned about this because the right ventricle is not made to pump to the entire body, the left is, but the doctor said that the risks may outweight the benefits to do surgery to repair everything else. He said eventually the right ventricle could fail, but it could be 20-60 years. We will revisit our options once we get over this most important first hurdle. They halved his prostiglandin medication and lowered his oxygen flow rate. They were hoping that halving the medication would help with the side effects. We were flying hight on all of this news. We had such a different expectation of the prognosis, outlook and future that the news we were getting was just music to our ears. We expected the worse and hoped for the best and it worked in our favor.

I went up later this afternoon to see Logan and how he was doing, his tremors had gotten worse. It was so hard to see. He was shaking and shivering and there was nothing I could do to help him. It hit me... hard. I cannot hold him to make him comfortable, I cannot soothe him, I cannot do anything to make him feel better. It killed me. We were so happy about how great he had been doing that I forgot how sick he actually is. It really sunk in, and emotions took over. I had to leave. I got back to the room and we were visted by the nurse we had last night during labor, who we ABSOLUTELY loved!! She found us to give us a folded paper with a print out of Elton Johns lyrics to the song The Greatest Discovery. I read the first line and completely lost it. She left us with the paper and her best wishes for Logan. It took us quite a while to be able to read it as it was all just too much at that moment.

Peering out of tiny eyes
The grubby hands that gripped the rail
Wiped the window clean of frost
As the morning air laid on the latch

A whistle awakened someone there
Next door to the nursery, just down the hall
A strange new sound you never heard before
A strange new sound that makes boys explore

Tread neat so small those little feet
Amid the morning his small heart beats
So much excitement yesterday
That must be rewarded, must be displayed

Large hands lift him through the air
Excited eyes contain him there
The eyes of those he loves and knows
But what's this extra bed just here

His puzzled head tipped to one side
Amazement swims in those bright green eyes
Glancing down upon this thing
That make strange sounds, strange sounds that sing

In those silent happy seconds
That surround the sound of this event
A parent smile is made in moments
They have made for you a friend

And all you ever learned from them
Until you grew much older
Did not compare with when they said
This is your brand new brother
This is your brand new brother
This is your brand new brother

Inside of the paper was a note from her that said "I wanted to find a copy of this before I left but it was so crazy! This is for your little boy getting his new baby brother! Congrats!" It was so thoughtful, and perfect, and sad all at the same time.
I think we needed to have a small breakdown, it brought us closer together. After we gathered ourselves we went up to see our little champion. He looked so great. He wasn't shivering, he wasn't shaking he was snuggled up in a small wrap and a little blanket sound asleep. He was beautiful, amazing, and simply incredible.
It has been a long day, with ups and downs. We are looking foward to the day that we can hold him in our arms and get a small dose of normal.
I am getting discharged tomorrow and we plan on going home and spending some time with Corbin and then coming back up in the evening and staying at the Ronald McDonald house overnight. Not being in the hospital is going to make this a lot harder, but we will figure it out and try to spend our time as wisely as possible until we head to Rochester. It'll be a long week.

Welcome to the World

We went into the hospital for our scheduled induction at 6am on monday the 20th. Things started off pretty slow, I got a dose of cervidil to help thin out my cervix. After an hour of recieving the dose I started having contractions. They decided after 4 hours not to continue the medication as my contractions were regular. At 8pm they started me on pitocin, we settled in for the night and tried to get some sleep. Of course, everytime I got comfortable a nurse would come in and adjust my monitors. Needless to say I didn't get much sleep. At midnight I had to go to the bathroom, when I rolled over my water broke. (What a weird experience!) Once that happened, the night went by very fast. My contractions sped up and got much more intense. At 2:30 am I asked for pain medicine, they gave me a syringe full of some type of pain control medicine, which I had had before with Corbin. It did nothing. After an hour I was dying for an epidural, any type of relief, the pitocin made the contractions so intense I was ready for some relaxation. The anesthesiologist came in around 3:30am and got me set up for the epidural. By 4am it was in, I was so looking forward to some relief.
I didn't get any.
The epidural had failed. I was asking why it wasn't working and they were all unsure, the anesthesiologist was called back in to give me another dose, which did nothing. The nurses said I was progressing too fast for the pain medicine to have any effect. I went from 4cm dialated to 7 in an hour. My contractions were forcing me to push even though I wasn't dilated completely. I couldnt help myself. The nurse let me push through and helped me dialate the rest of the way. According to our paper work, I was fully dialated at 4:19am, and Logan was born at 4:25am. I pushed for 6 minutes! And he was out! He was in a hurry! They put him on my chest and he began to cry, it was a great sound. They took him over to his little bed to clean him up and evaluate him.

He looked great! We were expecting a blue, oxygen deprived baby, but he pinked right up. He got an 8 out of 10 on the APGAR scale, the -2 was due to his color. Although he was pink his extremities were a little dusky. They wrapped him up and gave him to me he looked so normal and healthy. They took him away what seemed like immediately. We weren't able to see him again until 5 hours later! We were met with one of the cardiologists while we waited, he confirmed his diagnosis. The pulmonary steniosis was worse than we thought. The valve is bascially completely closed and there is no blood going from the heart to the lungs. All babies are born with a hole in their heart that typically closes hours after they are born. This hole is Logans only way of mixing oxygenated blood from the lungs with blood in the heart. The hole bascially bypasses the pulmonary artery, because of this they gave him a medication called Prostiglandin to keep this hole open. We were told that his oxygen levels were exceptional. After the medication was given his oxygen was at 80-85%.
We were also told that he began to have trouble breathing, which is a side effect of the medication, and also common in heart babies, so they put him on oxygen. They contemplated intubating him, but once they put him on oxygen he did much better. Yay!!

When we were finally allowed to see him he was hooked up to an EKG monitor and countless other machines. He had IV lines running through his umbilical cord. He looked so good, as far as color, and he was huge, 9.5 lbs, 22 inches! We just bathed in his company for a while. Unfortunately because of the IV lines in his umbilical cord we are unable to hold him. We can only stand over his bed and hold his hands and feet or touch him just to let him know we are there. Later in the afternoon we spoke with the doctor whom told us they had done an echo and reiterated that the pulmonary valve was shut. This is their main concern at the moment and the first defect that needs attention. He said that Logan will need a procedure to temporarily fix the problem. He will undergo a procedure called the BT shunt procedure, which is closed heart surgery. He will need to go to Rochester for this procedure, as it cannot be done here. The Dr. told us that he plans on having it corrected within the week. Finally, a game plan! The rest of the defects will be adressed once the pulmonary defect is taken care of. One step at a time! Although he is surprising us with how well he is doing now, he still has a long road of rough recoveries, but we are hopeful that he is going to be strong throughout it all.

Only days away.

Even though we have been counting down for months, it didn't seem real until now. Packing our hospital bags, not knowing how long we will be gone for, wasn't easy. It is all getting so real. We am beyond excited to meet our little guy and to finally have a game plan in place. The wondering and not knowing has been very exhausting.

We go in on the 20th in the morning to start the induction process, I'm a little nervous about it ending in a c-section. Not because I'm afraid of having one, but because if I have to have one, I'd rather have one right off the bat. I don't care how he gets here, I just want to hold him in my arms. We were told at our tour that we will have a room full of people. Specialists, NICU team, medical students, nurses and doctors. Once he is born we will get to see him for a short time, and hopefully hold him, but once they take him away we will have to wait a while until we can go see him. Jake can see him after an hour, and I'll have to wait about 2 hours.

I've gotten a lot of advice from other mothers that have heart babies, and it has been comforting. They don't beat around the bush, they aren't all optimistic and positive. They are realists. which is what I need. I appreciate everyone's kind words but the reality is, is that this is going to be a long, scary road. He is going to have his ups and his downs. We all will. Although heart babies are resilient, the recovery of surgeries can still be rough. I have an amazing husband, who is my rock. Although we are both very strong individuals this will be a test of true strength, in each other and in our marriage. I am confident that we will come out stronger in the end.

I have some information for you, if you've stumbled upon this page because you are experiencing something similar, or if you haven't followed from the beginning, of what his defects are. He has a total of 5 defects, that we know of as of right now.
Double Outlet Right Ventricle (DORV) - http://www.nlm.nih.gov/medlineplus/ency/article/007328.htm
Transpostion of the Great Arteries (TGA) - http://www.cdc.gov/ncbddd/heartdefects/tga.html
Pulmonary Stenosis (PS) - http://www.nlm.nih.gov/medlineplus/ency/article/001096.htm
Ventricular Septal Defect (VSD) - http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Ventricular-Septal-Defect-VSD_UCM_307041_Article.jsp
Dextrocardia - http://www.nlm.nih.gov/medlineplus/ency/article/007326.htm

Although these defects are common on their own, the combination of them makes for a  very complex case for the cardiologists. We are forever hopeful that Logan is going to be a fighter, he has to be! I will update again once we get the ball rolling on the 20th. See you then!

Some good news.

Today we went for another ultrasound and to check if Logan has a spleen. As I mentioned before, lacking a spleen is sometimes associated with dextrocardia.  As the tech took her measurements and labeled everything she never mentioned finding or seeing the spleen, but after, when we sat down with the doctors sure enough, in the notes, he has a spleen. We are so relieved. His defects are isolated to his heart only. Everything else looks great, it's all in the right spot and the right size. They estimate he weighs 6.11 right now, which, from what I've read, the estimates aren't very accurate, but we're hoping it's right. We want him to be as big as he can be before he makes his debut into this world. The bigger he is the better his chances if he needs surgery immediately after birth.

We then had our tour of the NICU. It really started to sink in that that is going to be our lives for an undetermined amount of time. It is scary. I am scared. Not because I don't have faith in the doctors, but because we have no idea what's going to happen. All of our questions can only be answered hypothetically. Which leads to more questions, and more possible scenarios. The worse part about all of this is knowing he has a serious health issue and having absolutely no idea what he is going to have to endure after he's born. People tell us we're lucky to know ahead of time, and sure, we are, but just because we are aware doesn't mean we can prepare. We have no idea how long it will be before he needs surgery, no idea how long he will be in the NICU. We can't plan for babysitters for Corbin because we have no idea when he will need to be watched. We will have to throw everything together after Logan is born, almost as if we never knew ahead of time.

Anyway,  the NICU was nice, the people we met were great. There are so many faces and names it's overwhelming, but it's all for the best. My appointments are weekly now for the last 4 weeks. I don't believe we will have any more ultrasounds. We haven't scheduled our induction yet, the nurse said we would solidify a date in about 3 weeks. We're planning on the morning of July 17th. We shall see.

I'm not sure if I'll have anymore updates after this one until he is born. My appointments are going to be pretty routine and I don't think we will get any new information. Now we just wait. We can't wait to meet him!

Follow up - Echocardiogram

I'm not sure if anyone is following us quite yet, but here is an update if you are. Not much of an update, which is good, actually. We had an echo today, with no new findings. Unfortunately, nothing has improved either, but nothing has worsened. We sat with the cardiologists, and asked about possible scenarios after the baby is born. It's all unknown. It is completely dependent on how Logan's heart works on it's own. We may get to hold him for a half hour after he is born before they take him away to monitor him, we may only be able to see him for a few minutes before they whisk him away. They don't know if he will need immediate surgery, or any procedures immediately, or if they will be able to wait because he can stabilize himself. All of these unknown factors kill me and make my mind constantly run, and wonder, and worry. I know he will be in good hands, and I know we are lucky that we get to know there is something wrong ahead of time, but it doesn't change the fact that it WILL be happening, and we have NO idea how he is going to manage on his own, before interventions.
After our echo appointment, we had an appointment with our prenatal care providers. After researching the most current diagnosis of Dextrocardia, I found that it is common for children with this defect to also have a missing spleen. I asked if it was seen in any other ultrasounds, and the doctor was unable to see if anything was said about it, but that doesn't mean it wasn't there. In fact, it gave me hope that it IS there, because you'd think they'd notice it missing. We will have an ultrasound on the 19th, and the doctor made a note to specifically check for the spleen. That is one piece of the puzzle I am really hoping is in place. If not, it opens a whole new world of problems for our little guy, and a harder road. Fingers crossed.
All in all, it was a good appointment. Long, but good, no news is good news.
Our next appointment is on the 19th for an ultrasound, a tour of the NICU and to meet with the neonatal team. We will also schedule our induction date. Can't wait to meet this little trouble maker of ours.

Ultrasound

Well, we had our meeting with our new high risk doctors today,  and the wait time in that office is terrible. That will be fun to deal with the rest of the pregnancy. We had an ultrasound first. The tech was super friendly and explained everything to us as she looked at it and took pictures. It was nice to be informed that all of his internal organs were there and normal. She looked at of his heart for a long time, so they can have a better idea of what they are dealing with since they are our new providers.  She had some trouble with the orientation of the heart and seemed confused but we all laughed it off and made jokes about it.
Once we were done we were sent back to the waiting room to wait for the doctor. Eventually we were called back. We sat down and waited, optimistically. She came in and introduced herself, she asked what our understanding was of what was going on. We briefly explained our viewpoint. She then explained that sometimes heart defects can be secondary to other defects. We were then told that everything else looks good. We were relieved!
However, his heart is on the wrong side of his body. Instead of being on the left side, it's oriented on the right side. A mirror image, is how it was explained. A very rare anomaly.  She explained that typically this doesn't pose any immediate threats to the baby. Thankfully. We will learn more about it on June 3rd when we have another echo and meet with the cardiologists.
We are expecting to be induced at 39 weeks.

I'll update more after our June 3rd appt.

Coping

Now what? We were just delivered news that our unborn baby needs heart surgery. It's scary. We can't be the only ones. My quest began to find other mothers that have gone through what we are about to endure. I have always been one to want to educate myself as much as I can on a subject that is personal to me.

Although congestive heart defects (CHD) aren't very rare, there are so many variations of different defects that can make certain cases more rare than others. I wasn't sure if I would be able to find someone with our same diagnosis.  I searched and searched. I was able to find a group of moms on a website that have children with CHD. Although many have different diagnosis their journeys are similar. It helped to read their stories and positive outcomes, it helped me to be more optimistic. 

It also lead me here. To this blog.  I've never read as many blogs as I do now. I wanted to be a part of the coping process so I decided to write about our journey in hopes it will help ease someone's anxiety that are going through the same thing.

Not only that, but between my husband's large family and our group of friends, I figured this will be the easiest way to keep everyone updated.

Our next appointment is May 21 with our high risk doctors along with a more in-depth ultrasound to be sure there arent any other issues as sometimes CHD is associated with other defects. We then meet our new doctors.

11 weeks to go before we meet our little warrior.

The beginning

At 20 weeks pregnant we went for the ever exciting anatomy ultrasound. We found out we were having a little boy and we enjoyed seeing him on the screen. The ultrasound technician was amazing, but our son was stubborn and she couldn't get a good view of his heart. She knew that parents to be enjoyed having ultrasounds so instead of trying to get a good picture, we were scheduled to come back in a few weeks. We didn't mind one bit! 

4 weeks later we arrive for our second ultrasound, luckily, our little guy is in a good position to get a few pictures. It was a quick appointment, as we were only there for one purpose. Once we were done we were sent to a patient room, as usual, to wait for the good word that everything was okay. The doctor came in and told us that there was a possibility that our little Logan may have what is called Transposition of the Great Arteries. What this means is that the two main arteries leading to and from the heart are in opposite places and would need to be switched shortly after birth. He said that it wasn't a definite, but just to be sure he wanted us to have an echocardiagram done. We left the office with many unanswered questions, and the possibility of facing a long journey, but we were optimistic. 

After our echocardiagram appointment we waited in the conference room hoping for the best. When we saw the doctor he was very friendly and asked us about ourselves and he discussed why we were there. Then I heard him say the most devastating word, "unfortunately". Unfortunately our baby had many issues with his heart. I was devastated. I tried to hold back my tears and concentrate on what he was explaining to us. Logan not only had what we expected, the Transpostion of the Great Arteries (TGA), but he also had Pulmonic Stenosis, a narrowing of the pulmonary artery, Double Outlet Right Ventricle (DORV), both arteries are coming off of the right ventricle, a hole in his heart, (Ventricular Septal Defect, VSD) common with TGA and DORV. It was hard to hear, and even though my husband and I both have medical backgrounds it was still difficult to comprehend all of the medical jargon thrown our way.  

He explained to us what our upcoming journey may include. Open heart surgery is inevitable, along with many other procedures on his little heart. The Dr. explained that he has a very complex heart and there are many variables that could change the plan of action, nothing would be for sure until after he was born and the cardiac team could get a better look at his heart. We left the appointment completely unsure of what our future has in store for us. 

The picture on the left is of a normal heart, the picture on the right is baby Logan's heart. Or at least an idea of what his heart looks like as of right now.