Day 65

Even on Halloween Mr.Sugar needs to keep it interesting. So with the bacterial infection they wanted to clean out his chest, try to get rid of plastic within his body and close his chest. His surgeon decided to take him back to the OR and do all this. We counted 6 visits to the operating room. CRAZY RIGHT!!! While there she was able to clean him out with medicine but when she tried to close his chest he did not like it. His Bp and heart rate dropped. He is still so swollen that he could not tolerate it She was only able to close the top part of his chest. So unfortunately his chest is still open partially She was not happy about that because of the infection but she didn't want to push it. She also did some more cultures while he was there and they also came back positive. He has an infection everywhere. He is not acting septic and he has not had a fever since yesterday afternoon. On a little bit of pressure support because of them trying to close his chest but he has already been weaned off one of them this evening. We just wait to see how he does. It's all a waiting game. One day at a time right?
I hope you have all had a safe and happy Halloween. Enjoy these precious pics of the boys in my life!!

Happy Halloween!!

Happy Halloween from Liam

Day 64

Our world came tumbling down again today. Last night Liam spiked a fever. Now he has a full on infection. Not only does he have pseudomonas in his et tube, he has it in his urine. They did a sterile culture on his chest tube and it also came back positive. The fevers are staying down with Tylenol and all of his vital signs are stable. He is not acting septic but we know this is bad. The one thing he had going for him in our long stay here, was he never had infections with fevers.
Infectious disease is now involved and they will have him on antibiotics to help with the infection. His kidney functions are also elevated so they need to be careful with the medication they treat him with. His sedation was switched today from morphine to fentanyl. He has become so tolerable to morphine that it just didnt seem like it was doing much. He is just not feeling good. My sweet boy cannot catch a break. Just when we feel like he was getting a chance this gets thrown at us. No one can take away our hope but our hearts are broken. They have been broken from the beginning since he was diagnosed but with this crazy roller coaster ride I would say tonight we go to bed with them heavier. We just now wait to see what he does. Pray to the heavens above that he can fight this. Thank you Lord for each day that you have given us with Liam, but please give us many more.

Day 63

His heart surgeon decided to keep Liam's chest open longer. He is still very very puffy! He is down on his weight but still has a ways to go. She said he is making slow and steady progress Liam's way. He tells us what he wants to do. They did wean on his vent some today but they all told us that don't be surprised for when they close his chest they will increase it back up. His sputum culture came back again for pseudomonas. He has had the et tube in for way to long that try are not surprised that this bacteria is present again. They are Putting him on more antibiotics. They did wean his morphine a little today. I do not think he was to crazy with that, he was More alert today and had a few crying episodes.
We said goodbye to Grandma and Grandpa Sugar and baby Parker. It was hard to see Parker leave. He is probably so confused on why he only comes to visit and then has to leave his mommy and daddy. We all know that they take very very good care of him, which makes it easier being away. Chris and I are homesick and miss all of our family and friends. It is only getting harder the closer we get to holidays. I always tell Liam that home is way better then this and there is so much more fun things we can do at home. He is already defying his mother at 2 months old. :)
We are sad we missed Halloween parties and wont be able to pass out candy. But we have a candy jar in Liam's room for people. It is one of our favorite holidays. Liam and Parker will both be dressed up. I can't wait for you all to see.
Please to all on the east coast in the path of hurricane sandy, Stay safe and we pray for all of you!!

Day 62

Liam had a good day. He continues to urinate, which is what we want to get his excess fluid off. He looks skinnier then what he was. We all love skinny Liam. They weaned on his vent again today. When the fluid comes off, it makes it easier for him to breath. Chest X-ray looks better. Still on high sedation but with his chest being open he should be!! Hopefully his chest will be closed soon! Chest tube drainage is still down. He is trending the right way! God is Good..... Thank you Lord for this day.
Nurse Molly knitted Liam a beautiful blanket. He loved it. He laid on it today and it felt so soft and cuddly, he slept all day. Thank you Molly, we love you!!
Nurse Christina brought him rockstar sunglasses because we all know he is a rockstar!!! Wait till you see how cute he looks in them!
My little boy is spoiled by everyone and we are grateful for all of them.
Grandma and Grandpa Sugar came to visit today, they brought Halloween candy and some Halloween decorations to spice up his room! Our Parker came back too! Parker did not come to the hospital but its so good to see him. I love being able to cuddle with Parker!
I got a great surprise today from some amazing girls. My bestest girls from high school came to see us today. Laura, Danielle, and Kelsey!! Just seeing them made my heart swell. I know they came to meet our superhero but having them here was great medicine for me. They brought home to Ann Arbor. I love those girls so very much.
Today was amazing!! I love these days

2 months old

Liam felt a lot better today. His sedation his finally at a level that he is comfortable. Thank goodness. He is way happier. He still has so much fluid on board. He started urinating a bunch today so I pray tomorrow he is less weight. He is supposed to weigh 7.4 lbs and today he weighed 10lbs. That is a lot of water weight. All of us women know what bloating feels like. It's no fun. Chest X-ray was better this afternoon compared to this morning. Lungs are not as collapsed as they were. They were able to wean a little on his vent today. Hopefully he holds strong on that and they do not need to go up any. He is already on tons of support from his ventilator. He is trying really hard to get better but Liam does it in his own time. He tells all of us what he wants to do.
We said goodbye to Jen and Ken today. We always have fun when they come to visit. They even wore Superman shirts for our hero today.
Thank you to Aunt Dana for his piggy bank. W love it!! He is one special guy that everyone loves!!

Day 60

Liam is doing well. On tons and tons of sedation. So much that if it was us on all these meds, we would be out cold for a week. With all these meds he continues to wake up with a vengeance. My man knows a thing about strength. He finally started urinating today. Hopefully the weight starts to come off more and more. Liam had his echo today and it looks great!!! Thank you Jesus.. His surgeon was very pleased with the results and said it was perfect. The dictation read unobstructive pulmonary veins. Liam has never had unobstructive anything. The power of prayer is amazing. Today was a good day.
My mom and dad were still here.
My sister Dana, Bryson and our friend Autumm came for the day to visit. Our friends Jen and Ken also came back to visit us. We love when people come to visit.
I met a great person thru mutual people. Her little boy is having issues with his intestinal tract. Today he was having surgery. Please pray for baby Gabriel. He needs all our prayers for a healthy recovery.

Day 59

If anyone needs a lesson on how to be tough they need to be taught by the one and only LIAM KENT SUGAR. He did very well today for someone only being 24 hours post op. They were pleased that he was able to be weaned off some of his meds that he came back from OR with. He has been stable. They did d/c his paralytic this morning. But on high doses of morphine and ativan. Trying to keep him heavily sedated. He has been waking up. Which it is good in a way so they know he is still neurologically capable, but with his chest being open he cannot be like himself at all. Today i got to experience him try to wake but he cried so hard, so hard like he was in extreme pain. My heart broke and i couldn't do anything to try to console him or make it go away. That is hard for me. That is not something they want because of his chest being open and so newly out of surgery. So thank goodness for our amazing nurse Wendy she was able to give him meds immediately to settle him out. It feels like we have started from the beginning but he is stronger and more used to these meds. He is such a fighter. His biggest thing now is to urinate. He has not been putting out enough urine to get his fluid off. He has a lot of edema again and we all remember that from precious surgeries. Nemo loves his water!! Just keep swimming!!

P.S. change of subject. I just need to show all of you my nephew Bryson He is growing up so fast and he is gorgeous. I pray for the day to come that Liam and Bryson can play together and be besties!!

Update

Liam has finally stabilized. His coloring has gotten so much better. His bloodwork has also stabilized. This afternoon was very very scary. He was heading down the wrong path. You know it's bad when the doctor says he is a very sick boy and we are trying to keep him off echmo. Echmo is a place that we do not want to go. Earlier he had a significant amount of internal bleeding, significant ventilator settings , blood pressure out of control. But now he is doing ok. God hear our prayers. He is not out of the woods but hopefully he has turned the corner. This picture was from this morning before surgery. I feel like he was telling us, it's all going to be ok. He is giving us all a run. My poor baby!

Please give Liam all your prayers. Complications after surgery are happening. Pray to god!!

SUPERHERO.....NO QUESTION

I know I have said it before but LIAM'S heart surgeon is amazing.   He is out of surgery, it will be some time before we get to see him.  She was pleased with how it all went.  She decided to go ahead and leave his chest open, to give him more room to help him heal.  She said he has a lot of scarring and his lungs look rough but his pleurodesis are doing there job.  With him being on the bypass machine your blood pressure becomes an issue so he went back on dopamine, epiphenrine, and vasotec.  He was on these medications before.  He did not have any heart arrythmia's during the surgery, the amiodarone he is on has a long shelf life..  She placed another chest tube on the left, a new one at the front.  She also replaced his pacing wires.  He still had his other wires on but they were not attached to the heart anymore,  My man is a ROCKSTAR........I think he has been through more then enough.   She said we just wait and see how he settles out from here.  The next few days are critical. She gave him another chance of life, we are so grateful.   No question that he is a real miracle.   All of our prayers are being heard from the good Lord.  Please continue your prayers.  He still has a long way to go but with all of you and the man up above he has a fightng chance.  xoxo

Surgery

The anesthesia team came and got Liam for his surgery around 7:30.  It's always so hard to see him leave the room.  His surgeon stopped in before heading down.  She is such an amazing person. So caring and loving toward us.  Not every surgeon would hug you to ease your pain.  She said to us,  I know this is all so hard but we are giving him every chance we can.  Not only is Liam fighting for his life, so are his surgeons, physicians, nurses, respiratory team, etc.  So many people love him and want him to win this fight.  The surgery will be about 4 hours long. The longest 4 hours someone can experience.  Please God, give us all the strength and courage to get through this.  Liam deserves a lifetime of love and happiness.  Please hold him in your hands today and everyday after. 
Thank you for all of your prayers.  We are so blessed to have so many people cheering us on. 
Will try to update as we hear.. xoxo

Day 57

Liam's big day is tomorrow. We are scared to death. It is so hard to prepare yourself for things we cannot control. Surgery is scheduled for 7:30 Today was tough for Chris and I, knowing things will be different again. He has come so far but still such a long way to go. Going forward with the surgery is tough but we want to bring him home. That is our ultimate goal. Please God let there be no complications during or after the surgery. Please give all the doctors involved the guidance for baby Liam. The only thing they did today was place an arteriole line in Liam's arm. It was sad because it was placed so he cannot use his arm or put his hand by his face which he loves to do. They had a very difficult time placing one. After a few attempts they were successful. My poor baby has been through so much. Hopefully this is his last go and only progress from here Lord, hear our prayers!
I DON'T KNOW WHAT TOMORROW HOLDS, BUT I KNOW WHO HOLDS TOMORROW!

Day 56

LIAM
L- Liam
I- is
A- a
M- miracle

ENOUGH SAID.........

Believing!!

Here is the latest..hang in there because its a lot to process. Trust me! So all the doctors (the best of the best) went over all of Liam's tests etc. Liam was born with a very complex heart. Not one heart is similar. He has a single ventricle heart. A normal heart has two ventricles. We like to call his smaller nonfunctional ventricle- his gimpy fin :) like Nemo's...
Since he was born, his gimpy fin has grown in size. Crazy right....So they were questioning if they could make him a double ventricle. With the complexity of his heart and how complex that surgery would be they do not know if that is workable. That would be so wonderful for him and his prognosis but nothing is simple with Liam Sugar aka NEMO....
So his heart surgeon feels like his pulmonary veins are fixable, which is good news and our first task at hand. They are not chronically diseasing outward toward his lungs. They seem to stay pretty dilated. They are stenotic right where the confluence of his heart is. (Where they meet at the aorta) Which she is happy with. Today she told us that she feels a little hopeful if she could go and repair them. The future for Liam is still gray but if she is a go then so are we. She would never attempt another surgery with him if she didn't feel like an outcome was possible. I asked her where we would go from here, her reply is my motto, one day at a time. Future surgeries are still questionable- would it mean heart transplant, or his fontans, or this far-fetched double ventricle.. Such a complex heart for a little guy.
We never know what tomorrow will bring for our superhero but he is a hell of a fighter and if he is going to continue to fight for his life then so are we. No going back now. He is our life and we wouldn't trade it for the world.
His surgery is scheduled for Wednesday . Unfortunately This means another open heart surgery, another round of going on bypass, more fluid etc... She said we are definitely taking a step back but it is way more positive then the alternative. Nemo ROCKS!!

Day 55

Liam finally got to meet his big brother today. Beyond words the way we felt seeing them together. Parker was such a good boy. He was interested by Liam but of course he enjoyed the attention from everyone that was willing to pet him. I loved seeing all my boys together.
Lots of visitors today. My cousin Julie and Aunt Becky, my Aunt Cindy and Uncle Dave, my mom and dad were also still here. Then Grandma and Grandpa Sugar, Aunt Jamie and Uncle Nate drove up today to see us too! we are so blessed to have a such a wonderful support system.
Today they increase his feeds again. He seems to be tolerating 10 cc an hour. Hopefully he continues to excel in eating. I always tell him that's how we grow strong and big. No other major changes just waiting to hear the big plans tomorrow from the doctors. Please God give the doctors the wisdom to find a way for our baby! Please give us the strength to handle the day. Please help Liam with all of his complications. He is one special little boy and we are blessed. Thank you for every moment you have given us. Xoxo

Day 54

The day was very good. A few changes made today. Went down a little more on his sedation meds and increased his feeds Hopefully he continues to tolerate it and they can keep increasing. Worried for the future days to come but one day at a time.
Liam had lots of visitors today. Uncle Tang still in town, Grandma and Grandpa Mirone also here. We had a nice visit with cousin Brian and Katie. He enjoyed all of them. He was wide awake a lot today which we all took advantage of. He loved looking around and interacting with everyone especially Uncle Tang. He told him lots of stories, unfortunately they were all about me and they were not very mommy like. Haha.
We are enjoying every second of everyday.
Xoxox

Day 53

My day ended with the best surprise ever. My best friend Josh (aka Tangy for all of you that know him) flew from California to see me and meet Liam. Such a great moment to see Liam meet his Uncle Tang for the first time.

The best physicians in the nation all got together today to review all of Liam's previous exams. They decided to get a cardiac MRI for further evaluation. We all know that Liam has a very complex congenital heart defect. So many options for them to consider. They want to go over everything in detail before making any plans. We all believe in miracles. Liam is that for sure!!

Prayer chain.

I need all my warriors to pray. Cardiac MRI scheduled for this morning. To evaluate Liam's pulmonary veins and to check his right ventricle to see if he is a candidate for a future surgery. This would be to make him a double ventricle heart, making blood easier to push through. Please pray to our Lord and Savior that this boy still has a chance. God, thank you for these physicians. They have hopefully found another chance for my little angel. To survive. Please let them find a possibility! We believe in hope and miracles!!!!!

Day 52

Liam had a abdominal series today to see if he had any obstruction or malrotation of his intestines. The results were normal. They are to restart his feeds tomorrow. He also had his 2-d echo today. Unfortunately the results were not what we had hoped for. His pulmonary vein pressure is back up. Devastating news for all of us. This is not something we want to hear. All the physicians are planning to review to see what they all agree on for Liam's future. We were told that there might not be much to do that would be beneficial to Liam. Our hearts are breaking.
Chris and I both got to hold him for a long time today. It's the best feeling in the world to get to hold my little miracle and to get to feel his warmth. He rested his tiny little hand on my heart and I just sat there and cried. Thank you God for that moment. I couldn't imagine loving him anymore then what I do.

Thank you to all the people in the PCTU. They help me cope with all these emotions and I am truly blessed to have met all of them. They kept me talking today and even laughing. I believe Liam has won them all over too!

Day 51

Thank you Lord for all that you have given us. Everyday is a blessing with Liam. His strength and his will to fight is amazing. Liam had an episode last night where he dropped his heart rate and his oxygen along with his vent settings. Lets just say he was super pissed and clamped down. He pulled out of it pretty quickly thanks to the team that was on. Thank you Nurse Molly!! He wants to keep things interesting that's for sure.
Chest X-ray a little hazier then yesterday's, hopefully it's just because they are making his lungs work harder with the vent settings being low. His goal today was pulmonary work. Nurse Jenna did some percussion on his chest hoping to improve his lungs in that manner and she also laid him in the prone position to see if that helps as well. Lets just say he was a crappy patty with both of those ideas but he does settle out pretty easy and he was able to be proned for 2 hours earlier and 4 hours later. Lets just hope it helped and his chest X-ray looks better tomorrow.
His feeds are holding steady at 5cc and hour but they want to advance him up to see if he tolerates. That is a concern as well. You never think of eating to be an issue right? The last few times he has gone up on his feeds his belly gets hard and distended, and they have to quit. hopefully we just have to get his bowels moving.
Liam is going to get his weekly 2-d echo tomorrow to check his pulmonary veins. Pray they are still at a good gradient. This always causes huge anxiety for us. With everything else going on we seemed to forget that Liam needs his pulmonary veins to be good ALWAYS!
The plan is to see how he does in the next week. In regards to his feeds, his surgeon said early next week he should have an abdominal series to check his intestines. Hetertaxy patients experience complications with them being twisted or having a kink in them. Hopefully that's not Liam's case. He has had his fair share of complications.

Thank you for all the food that you have been sending us. Chris and i have been eating so good. Special thank you to Amy Haug Boccieri for organizing all if it. Xoxo Also to the staff at St. Elizabeth maternal fetal medicine for thinking of us and sending us too! All of you are amazing.

His nurse today and yesterday was Jenna and we love her along with respiratory Kelly. I have so much fun with them. I get to have girl conversations and it is great to talk about other things beside medicine I have said it before but the people that work at this hospital are wonderful. I enjoy all of them.
Prayers always. Xoxo

Day 50

Liam had another solid day today. Chest tube drainage still slowed, chest X-ray no real significant changes but we will take it. They decreased his morphine so he is interacting with us more, which we love. Just a little wean made on his vent. Baby steps. He laid in his mommy's arms for four hours today. The only reason why I gave him up was because I had to go to the restroom. The physician came in and said that he is making improvements. We still do not know Liam's future but he is going in the right direction. Not sure if he can wean off the vent, not sure if he is a candidate for his future surgeries etc. but we will discuss that when we get there. LIVE IN THE NOW.....
Liam is one famous guy, so many visitors in and out of our room from the staff. We love all of them. I love talking to them and getting to know them. Nurse/Aunt Molly was his nurse this evening. She let me give him a bath, that's always so much fun. He hates it but I love it.
Xoxoxo love you all...

7 weeks

Don't stop Believing....
As all of you know things for Liam have not been good. Tomorrow was our meeting to discuss Liam's future.
Well......our SUPERHERO does it again. He told us he is not done yet. His chest tube drainage has significantly slowed, his chest x-ray was 1,000 times better, they weaned a great deal on his vent, decreased his morphine. Today was his day. The physician came into his room and said we are going to cancel his meeting and see how he does over the next few weeks. Liam is telling all of us to continue to fight!!! Thank you Lord for answering our prayers, thank you thank you!!!!!!!!! Hope has been restored to our lives. He has been given another chance by our Lord Savior. How can we not believe in prayer or miracles. With God anything is possible. A wise man told me today stay " Cautiously Optimistic" We are still on this crazy roller coaster called the PCTU but all I can say is GAME ON, the Sugar's are not done yet. He is an amazing little boy. Stole the hearts of so many. I believe in the power of prayer always and forever.

Today was a great day. We had fun with our nurses, ate wonderful food (we haven't eaten this good in a long time.-- thank you to all of you for sending us food). Chris gave him a bath, he got held, he got a hot dog halloween costume that we had a lot of fun with and we read some books. Thank you for this Day, one that has restored our hearts. Hopefully, tomorrow we are still going in the right direction. Day by day, moment by moment. I am so proud of my little boy.