For my PCTU GIRLS.

To all my PCTU girls,
I miss you all terribly. For three months I learned to love each and everyone one of you. You all brought different things to my life. If it was getting some amazing advice from you all, or catching up on our celebrity gossip, or eating food together, or reading Liam books, making crafts, or just getting to know all of you and you all getting to know us. I am forever blessed to have had those moments. I know my sweet angel above is watching over all of you as well. Liam knew you all as family as much as we do. You are all apart of the Sugar/Mirone clan forever.
Chris and I returned home from a quick getaway and we received a card from all of you and it brought tears to my eyes. I love you girls so much and I will never forget any of you.
Chris and I would love to make a trip back to see all of you soon.
Much love from me to you!!

Every day is a challenge

Everyday is a challenge. Not a second goes by where I do not think of my baby boy. From the moment my eyes open in the morning until my eyes close at night. I still continue to think about him while I sleep. Sometimes I feel so connected to him after a nights rest. Like he was dancing with us in our dreams. Every night I ask my little solider to rest his head between Chris and I and continue to comfort us. Knowing that he is with us no matter where we are and what we are doing also gives me peace.
His strength in his short life, knowing all that he endured, helps Chris and I fight through our challenges. Life will never be the same. But having conceived a child that was destined to be a superhero and a gorgeous angel gives me strength. I am so blessed to know you all love him as much as we do.
The firsts of it all without him is hard. Yesterday he would have been three months. It's crazy how the 27th of each month has so much more meaning. Or how crazy it is that life it's self has so much meaning.
Christmas will be another hard challenge but I thank god everyday for our support from our family and friends and to all of you I have never met. You all continue to give us the strength to get through another day
I still continue to live one day at a time. Always new moments or conversations that wear me down but it's all about the power of prayer. Without that I would be left with nothing. We believe in heaven and angels for a reason and I have a very special one with me all the time.
Chris and I escaped the cold weather in Ohio for a few days and came down south to enjoy the sun and each other. It was a much needed getaway. I have felt guilty throughout the trip with leaving home after just getting back after three months of living in Michigan and that I should not be enjoying myself after losing Liam. But he sends me little signs letting me know its ok and I am with you. People like to call them Godwinks. I will share a few pictures from our trip, you will see what I mean. Almost like little balls of light or as what I say my precious angel just hanging out with us. Love to all xoxo

Born and raised

I may have been born and raised a Buckeye fan but my heart is in Ann Arbor.....
GO BLUE!!!!! For Liam.

Thankful

Today I am thankful for the 78 days that I got to spend with the most amazing little boy. He has made me a better person. I am also thankful for the wonderful support from our family and friends and to all of you that have shown so much love to us. Some of you I do not even know but just having all of you to be right along side of us , means so much. The love is overwhelming and gives us comfort.
Happy Thanksgiving from the Sugar's I hope you all spent it with the ones you love the most. I know my sweet angel was with us all today. He is missed dearly.

Mourning over my son

Has I am in bed tonight mourning over the loss of my son, all i can think of is blogging my thoughts to help me cope. I guess its like writing a journal of my feelings, which I have done since day 1. Over the last few days, I have kept myself very busy. Doing things or talking to people from the moment I wake up to the time I lay me head on my pillow keeps me together. Falling asleep from exhaustion is easier then laying in bed crying yourself to sleep. Being within my own thoughts is my downfall where I continue to miss him and grieve for him. Which I know he is looking down On me saying Mommy, please don't cry, I am safe here with Jesus. I want to be selfish and wish he was here with me. I want to experience the sleepless nights caused by him crying instead of the ones with thoughts of sadness. I want to feel the annoyance of going somewhere and having to take almost your house to accommodate his every need. I want people to meet him and get to see him grow up. Those are the things I dream of.
As I was on the couch tonight I continued to feel a pit in my stomach growing larger and larger until the tears started coming and all I could do was let them come and pray.
I miss him more then I could tell all of you. I know it will always be like this. Our lives are forever changed. Chris and I have changed. Little things don't matter anymore. Realizing what makes us happy and not taking for granted the things we have instead of wanting things we do not need or worrying over things that are not important. It puts our lives in perspective and we know what counts.
I live moment by moment until we see him again.
Thank you Dr. Marx-Armille for making this. I love it for always! Xoxo

Rest my sweet child

Yesterday we laid to rest my little boy. It was the hardest day of my life. He looked so peaceful and so beautiful almost like a smile was on his face. That brings comfort to me. He was letting us know that he was healthy and happy playing in heaven.
Chris and I decided to have a private service. All of our families and our closest friends came to pay respect to our son. Some of the most wonderful people from Ann Arbor that got to know us and Liam also came to honor him. Thank you so much to those five amazing girls. It was a long trip for them to make in one day and it means everything to Chris and I and our families to have them share in this day with us. We love you, Wendy, Molly, Jenny, Nicole, and Julie.
We honored him by beginning the service with the song Amazing Grace For those of you that know my family, you know that song was touching because it was played at my cousin Katie's funeral as well. Pastor Larry gave a beautiful service, one of the best I have ever known to help us mourn, celebrate and honor my baby boy. I asked Pastor if he would recite The poem "I still would have chosen you" by Terri Banish (Which I have previously spoke of it in a previous blog which was sent to me by a special person). The song "I won't give up" by Jason Mraz was also played. These two pieces were so fitting and so true and so Liam, its the way we feel about him and our journey. I would have chosen him to be my son and it was all worth it. I had the best 78 days spent with the most beautiful, most precious angel that I could have ever known. We finished out the service with everyone paying there last respects with the Superman theme song. The service could not have been more perfect. It was a funeral for a king!!!!
We then had a procession to Poland Riverside Cemetary where his body was laid to rest with prayers. We then celebrated his life with a reception of food, family and friends.
It was a hard and very sad day, one we will never forget. There are so many of you that have grown to love him as much as we do and I Thank you. One little boy made such a difference in his short life and I am honored, blessed and proud to be his mother.

Missing my Superhero

The love and support from all of you is so overwhelming. I thank each and everyone of you for following our journey. Liam has touched more lives in his short life then I could have ever dreamed. I never realized when I began writing about him and our life that so many people would follow. I believe that his short life was to bring so many people together and bring us all back to prayer. Prayers get me through, not only my own but all of yours. I believe in the power it holds. We all prayed for miracles and we got them. Everyday and every second of every day that he was on this earth, God showed us miracles. Someone told me that he surprised everyone that he lived as long as he did with such a devastating diagnosis but he did so because of the overwhelming love that we all had for him.
He passed away and went to our Father so peacefully in our arms while surrounded by so many that loved him whole heartedly
We miss him so much and is thought about every moment of everyday. He has changed my life forever. He has taught me so much and Chris and I are so very proud of him.
When times started to get tough before he left us my parents took me on a walk by the hospital to a river where we sat on a bench and enjoyed our surroundings and there I heard the song I won't give up by Jason Mraz and it reminded me of him. The words "God knows we're worth it" speak volumes. All of this was worth it. Having the time we had was worth it!
We lost my cousin Katie when she was young and I know for certain that she has been holding him and loving him since he got to heaven. It brings me comfort knowing I will get to see him again someday.
Thank you for everything. We love you all.
Would like to send a special shout out to my amazing father and grandfather Dana, Happy Birthday Dad. I love you xoxo

Day 78

Today at 6:59pm our little boy got his wings! Everyday that we spent with him is a day we will cherish forever! Chris and I are so proud to say we our parents to a SUPERHERO.
We created an angel that will never be forgotten! He is finally at peace...

Day 77

The Lord is with me; I will not be afraid
Psalm 118:6
Pray for STRENGTH, COURAGE and PEACE......

Day 76

Liam had his wound vac changed today and his incision is healing nicely. He tolerated the change well. Still having fevers off and on today. They do come down with Tylenol. Still having Bp issues. Especially when he is heavily sedated. But overall today was restful. He would wake up like himself and interact with us then peacefully fall back to sleep.
I sat on his bed today and we had story time. I put him to sleep along with Chris and mom. I love days like today. They prove that every moment with him is a miracle.
My dad and Aunt Amanda came up this evening. We love when our families blend with our PCTU family.

Day 75

I received this from someone today that wrote on my blog! I wish I knew your name, this poem has touched my heart more then I could tell you. Thank you for sending this to me. All of it is so true. Through all of the sadness and heartache I would have never have changed any of it. Everyday and every second of everyday that Liam is here on earth has been a miracle. He has touched all of our lives.

. I Still Would Have Chosen You ~By Terri Banish

If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you...
If God had told me, "This soul would one day need extra care and needs", I still would have chosen you.
If He had told me, "This soul may make your heart bleed", I still would have chosen you.
If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you.
If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you.
If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you.
If He had told me, "All that you know to be normal would drastically change", I still would have chosen you.
Of course, even though I would have chosen you, I know it was God who chose me for you.
I write this blog to all of you while I lay from Liam's hospital bed. Nurse Jenna had an amazing idea to get a big boy bed for him so we could be close to him and cuddle him. It was so cute at one point today. He woke up while I lay staring at him and it was almost like he said wow mom watch my personal space. He has the best expressions.
He spiked another fever last night. His weight is down. He is still significantly swollen but his eyes are finally his eyes if that makes sense. Our plan at this point is to see how he does over the weekend and re echo him on Monday and check the blood clot again. Obviously at this point we are going to let God be in control and love up on our little boy the most we can over the weekend. We want to celebrate Liam !

Day 74

Some of the hardest days of my life have all unfolded here in Michigan. Liam held steady today.. Still has extreme body edema. I did get a few moments of his eyes were I was able to read him a book today. He is still the sweetest boy..it's like he looks at me and says it all ok mom....
He has changed my life in so many ways and made me a better person. I met with his surgeon and the attending along with some great nurses and our social worker today to go over Liam's care. Liam is on a downward slide and if he continues to need additional support with blood pressure etc they feel like it is not fair to him to do this. His little body has been through so much. Everybody has said Liam will tell us when he cannot do anymore and my fear is that he is telling us. Chris and I have made a promise to never do harm to our little boy and always do what's best for him. The doctors all say we will never need to make decisions on our own, these people are amazing and I truly love them all whole heartedly.
Another echo was performed today and his pulmonary veins that were fixed in his last open heart surgery look fine but they found a blood clot on his broviac. This is a line that goes into his heart for access for meds!/blood. They started him on heparin to see how this all works out but it continues to be one thing after another for him. My mom has been here for me since Chris left, she has been my backbone through all of this. Aunt Angie came up to visit with us for a few days. She always bring positive energy to us when we need it most.
Prayers for my son, for strength, courage, and peace. Xoxo

Day 73

Today was one of those days where the tears just pour over and they won't stop. His weight has significantly increased. It almost does not look like him. Its very hard to see him that way His wound vac dressing was changed today. They were very pleased with the way it was all healing. So that's good and his sedation and pain we believe is finally well controlled. Those are the positive that came out of today. The increase of his swelling is very bad making it harder for him to breath so they needed to increase his vent settings. Over the last few days his blood pressures have been low, they needed to start him back on epi again for his readings. I was very sad about that but they are hoping to wean it down quickly. But since they have him back on these meds he needs to have an arterial line put back in. This is to make sure he has a constant Bp reading in place and can be monitored more closely. Trying to find arteries they can use has been an issue for a very long time. Hoping that one can be successfully put in place for him. So if things couldn't get bad enough around 6:30 tonight he started having his arrhythmia's. Liam has not had any rhythm issues in over 2 months. He has been on constant amiodarone of 5 for so long with no issues. When he has his episodes it does not reflect on his Bp so much but it's very concerning that he is having these issues again. The last open heart and this infection has set him back a great deal.
The worst part of our day was saying goodbye to Chris. He had to go home and go back to work. I am so very proud of him for making such a hard decision. It was not easy seeing him leave and I know he felt the same. I love you Christopher! You have made me so proud and so happy to be your wife. Liam and Parker are both lucky to have you as their dad.
Days like today are emotionally and physically draining and all I can do is pray!

Day 72

Daddy read him a book tonight and it was the cutest thing ever! Some quality Liam/daddy time!
The day was not a bad day! He did have some fluctuating blood pressures today but his albumin was low, he has been urinating so well that it is drying him out so he needs fluid replacement. Even though he is putting out a lot he gained weight last night. It's all such a vicious cycle.
Main thing with Liam is to get his pain under control. They had to increase some more of his meds overnight and he seemed much more at ease today.
Tomorrow is a big day for him. His surgeon is going to replace his wound vac and take a look at his incision. I pray super hard to the heavens above that she feels it is looking better. We have not gone this far for not proper healing of his body from the last Open heart. It will be two weeks tomorrow already since his surgery. My Prayers tonight.... Our Heavenly Father, thank you for all you have given us and forgive us of our sins. Thank you for our Liam and all that he is. Please god heal his body let us receive some hopeful news tomorrow. Let him continue to fight this battle. Hold him tightly in your arms and give him some squeezes, help him with losing more weight and hold his lungs in your hands to help him breath better and wean on his ventilator and get a good chest X-ray. Stable out his blood pressures so they can wean on his meds. Please don't let him feel pain. Help him by your love to keep him comfortable. Through this whole journey, we have never wanted him to have pain, please help him, hold him. I know Lord I ask for so much but we believe in you. We all believe in the power of prayer along with miracles. Thank you for hearing our prayers. Amen

Day 71

My babies day started out so super fun Uncle Tangy came back from California to visit us again. We love when he is here. He bring so much joy to all of our lives, Liam stares at him and hold his hands for hours. We don't know when we will see him again but he will always be here in spirit.
Liam's pain was better controlled today. He was more of himself that is for sure. They took him down to the cath lab again today. They replaced his pic line. He has had one on the right leg for almost 2 months. They put one in his left leg. This is where he gets all his meds and blood draws. It is a pretty important access line for him. Another field trip for Mr. Liam. He is one busy boy! His surgeon stopped in today after a weekend away. She just wants to continue the wound vac for a period of time. Hopefully it helps with the healing process of his chest. Of course if the infection starts to deteriorate his little body by not healing his sternum or not helping the tissues heal then we have a horrible situation. She feels at this time and even after talking to all of her colleagues that we will continue to proceed forward. She is such an amazing person and cares so much for her patients. She continues to be straightforward with Chris and I, she promises to never lead us down the wrong path. When it starts to be to much or there becomes no hope she will let us know. Everyone is Still so uncertain of his future but everyday we spend with him is a miracle. He still has so many obstacles to endure but he continues to fight and so do we! His belly is still big but today was successful. He had three large bowel movements. This is a huge deal for him. His belly instantly became softer not has hard. Nurse Wendy and I laughed at him so hard. He did not enjoy it while it was happening but afterwards it was like he made a huge sigh of relief and fell asleep. That was priceless. It's like he has no idea what was happening and he did not like it but afterwards its the best feeling. He is so funny.
I love reading all of your posts. They warm our hearts more then we could ever tell you. Keep them coming!! Liam can sense all of your love! Xoxo

Day70

Liam was not a happy camper today. His belly has gotten rather large again and he was having a lot of discomfort. They got an X-ray of his belly and it showed a lot of air. They gave him suppositories hopefully that would help let him pass some gas. They also went up on his sedation and pain meds. He did not feel good at all today. So is mediastinal chest tube fell out today so there was some leaking and air around the site. They wanted to clean it up but while they were there they replaced his wound vac. He was in a lot of pain. He did not tolerate that procedure well. They had to give him lots of pain meds and he did not like it. My poor baby. He is fighting so so hard but its a rough road trying to get there. Prayers for Liam make a difference. My Aunt Lynn said something awesome today...Faith moves God, we need to remember that. Faith is all we have...
He had a bad day but
We had some great visitors to keep us occupied. My Aunt Lynn, my cousin Rochelle, and my cousin Alyssa drove up to meet our superhero and Aunt Mary and Uncle Rick also wanted to spend the day with us too. They love Liam as much as we do!!!

Day 69

Liam had a good day today! Our girl Nurse Wendy was on...he loves her so much and so do we. Grandma and Grandpa Mirone and Aunt Jamie and Uncle Nate were here to visit as well. He is such a champ. They were able to wean off his epi today and his Bp remained stable. No major problems there. They also were able to make a wean on his vent as well. They decided to also try to wean his Ativan just a tiny bit. He seem to tolerate the minor change well. Steady and slow changes for him. He likes it all done on his time. He is a happy little boy even with all his complications.

Day 68

They went back in today and washed out his chest with medicine. Their plan was to close his bone and put a wound vac on his chest. He tolerated all very well, they did not have to go up on any of his BP meds or barely increase his vent settings. They closed his bone but externally they left openings for drainage from his infection. They placed a wound vac over top of the incision to help heal and pull some of the infection. They were happy about being able to do all this without any difficulties. We hope he stays stable with no issues. We can not let any of this bring our tough man down.
So we all know he is Superman right well now with the wound vac he looks like Iron Man... My man is one big superhero all around.

Day 67

Today was a quiet day. No major changes. As his cultures continue to come back infectious disease adjusts his antibiotics to widen the susceptibility of the infection. His WBC was higher today from yesterday. But his surgeon said she would stir things up when she cleaned him out yesterday. Their plan is to try to close more tomorrow along with another wash out. Being able to close him and remove as much plastic as they can will benefit him. His Bp has been fluctuating lower today, so I hope his little body is able to tolerate all that continues to be thrown at him. He was comfortable all day today and when he did wake up he was our Liam. Our sweet boy with those gorgeous tell all eyes!!
I cannot tell you all how much these amazing people that we have met here at this hospital mean to Chris and I. They are all apart of our family. We really love all of them. They make it easier to be away from home. These people will be apart of our lives forever. Chris and I are also blessed to have so many of you loving and supporting us. Words cannot express how much you all mean to us as well. Some of you I have never met but knowing you all love and pray for this little miracle as much as we do is overwhelming. Thank you. Xoxo
I also would like to take a minute to pray for all the others that are going through difficult situations. Life is sometimes not easy but our only way of surviving is believing in our God our Savior. That's how we get up in the morning!