The firsts are the hardest

Chris and I have made it through our first Christmas without Liam. It was very hard with many moments of sadness and tears shed for what we have loss. With much help from the ones we love, we managed to get by. When the overwhelming urge to cry comes it becomes a constant stream of tears that cannot be held within. Even if its at Christmas Eve service when the church choir sings or when you see that little boy and or little girl being held by their mommy and daddy or even when you wake on Christmas morning to the truth of knowing we will never have him to know about Santa or to watch him open his presents. Those are the moments that you feel like your world is suffocating you. For those of you who have lost a child I felt what you felt at those moments. I pray for comfort and peace always for Chris and I, and our families and friends and for all of those mourning over a loss. But he celebrated Christmas in heaven with the one we celebrate. Our Father. You cannot ask for more. If he could not be with us on this holiday I am blessed knowing he was being held by our Jesus. Loving him as much as we do.

I have received from a dear friend of mine Theresa a few books recently. "Heaven is for Real" written by a four year olds father about his trip to heaven. This little boy was near death after a ruptured appendix and had to have emergency surgery. In this book, over a few years time he made comments to his parents about his trip to heaven and what he saw and who he met. He knew things that no four year old should know unless he saw it with his own eyes. I loved this book. I recommend it to everyone. It helps paint a picture of what heaven is like.
One main point I took out of this book was the little boy told his mommy. I have two sisters and his mom got very sad, he only had one living sister but something she had never told him was she miscarried early on in her pregnancy. She did not know her baby was a girl. Just from hearing her son say that was amazing. He told his mom that his sister said to him. " I cannot wait to see my mommy and daddy!"
That would bring anybody to their knees to believe that heaven is for real. I feel Liam saying that, there is no time in heaven and he can see us and is waiting for us to get there.
I also read, I will carry you by Angie Smith. This is a book that I felt while reading, this-lady was specifically writing to me.
She was diagnosed in her early pregnancy about her daughter Audrey unable to survive life. They decided to carry her to term. She survived two hours before passing and that precious little girl spent her time her on earth being extremely loved. . I would like to share a few comments she wrote that I feel so connected to.
Angie Smith wrote......"God had so much more planned for your life then what we could have ever imagined". I believe that for Liam too. He brought so many to love, to prayer, to hold tightly to the ones we love, to connect so many of us with each other. Children bring us so much love so much joy but others show us what is important. Others bring us back to remember why we live and why we believe.
"The lord gave us a lifetime of memories in such a short time, I knew you would be apart of us always"-Angie Smith. We have more memories to hold onto. Liam endured a lot in his short life but he gave us those moments were we will cherish forever.
"Do I believe my baby is in heaven? Yes but sometimes it is not easy when you have empty arms and your baby is an unreachable place.. That is why we call it faith"- Angie Smith.
Angie also wrote "it's really a delicate balance between letting yourself grieve the way you need to and functioning in a world that keeps reminding you of what you have lost". So true...we grieve, we cry, we laugh, we hold onto what helps us.
I loved this book, for all those who believe in God and/or lost a child. I recommend this book. She shows sadness and grief, and sorrow all in one book. But she also feels the presence of God and that's what gets here through her dark days. Angie and I have the same outlook.
"Trust in The Lord with all of your heart, and lean not your own understanding. But in all ways submit to him and he will make your path straight. -Proverbs 3 5-6
Angie Smith wrote a letter to her daughter, it was such an amazing way to tell her how she feels. Writing on paper is easier then saying the words. This blog has been my journal and my coping mechanism through our journey. I thought it to be helpful, so here goes......

My sweet Liam,
The one with large beautiful eyes, the one who brought so much joy and love into our lives. I miss you and cry over you everyday. I fight harder in this life because of you, my faith in God is stronger because of you, my love, my heart, my everything is better because of you. You have changed your mommy and daddy forever. We received your handprint on charms from your Aunt Dana, we wear them around our necks everyday. They are engraved with your name, your birthdate and the saying..."keep me in your heart, and I will stay there forever". You will always be there and when that day comes when I get to wrap my arms around you again will be beyond words. Just saying that brings tears to my eyes and a smile on my face. I look forward to that day. You will always be my little boy, my first born, my will to push forward in this life. You brought so many back to prayer, to hold onto their faith. I am so proud of you and all that you stand for. Me and daddy love you so much. This place lost an amazing little boy but heaven received an amazing angel. God, thank you for letting me be his mommy, thank you for letting me get to know him, to love him and share him with the world. Even if he was meant to come to you early, he showed us the way we want to live our life. I am blessed to say he was my son........

So many of you have reached out to Chris and I and sent us beautiful gifts or donated to us. I thank you deeply. Other people have reached out to see what they can do for us. Chris and I need nothing. Your love, prayers and support mean everything. There are other families in need that do not have the support we do. We would like to extend the invitation to donate to those who need it. The University of Michigan is where we spent almost 3 months of our life. For those of you who would like to give, I thank you. Here is how.... This is a family hope fund, that gives lodging, gas cards or money for food etc..
We can donate to this fund in Liam's name by writing a check to the Family Hope Fund. Code 315580. Write in memory of Liam Kent Sugar in memo or how you seem fit. So they can distribute to families in his name.
Mail to:
Therese Apostoleris, Development officer
Children and Women Health, The University of Michigan Health System
1000 Oakbrooke Drive Suite 100
Ann Arbor MI, 48104

Thank you to all!! Have a safe and Happy New Year!!!
Much love,
Angie

For the world to see

These blogs are my journal that i have opened up to the world to see. I am blessed to have created one, for all of you to have had the experience of loving Liam or getting to know Chris and I. They are just my feelings that I like to share. I am grateful for all of you that follow!

Every morning I open my eyes and I pray. I pray for strength to get me through the day. I pray for Liam to always be with me. I pray for all those families that have to go through the holiday season with the grief of loved ones we have lost. There are so many of us that share in the loss.
It's been almost six weeks since Liam left this earth and there are days were I am ok and others that I feel the overwhelming urge to cry all day. I have returned to work a few days a week and its been hard. I never realized how many people would not know about Liam's passing. They are mean well, when asking how the baby is doing but it becomes emotionally exhausting having to tell his story over and over.
I miss him so much and the sadness is still so raw but I get comfort at the thought of heaven.
The school shooting broke my heart. As I think about the families that have to deal with such devastation. I feel for all that deal with such loss. We are connected by the sadness and tears but I know God walks with us and on our hard days he carries us.
Chris and I feel bittersweet about Christmas this year. The true meaning of Christmas means so much more. We will be surrounded by our families and friends to celebrate this time of year but I am not going to lie, I want to sleep the next five days always and pretend that none of it happened. But God made us strong and we do not live our lives like that. We are not wired to crawl up and hide, we want to celebrate our son and what he stood for. We want to watch Bryson open all of his presents from Santa, we want to watch our families enjoy their presents we bought for them. It is the power of giving, the power of love. Chris and I feel that if Liam was strong enough to fight then so should we.

I wish you all a very Merry Christmas and a Happy New Year!
Much love from me to you!

Lets give to the ones who need it

With Christmas coming we never realize how many children have to spend their holidays in the hospital. A wonderful couple Dean and Megan Stevens have set up a donation program to give toys to them. I love these programs because they hit me hard especially knowing how these families feel not being home during these times. For whoever wants to give back to those who need it this is a great way to make those children feel special. I can only imagine their faces when they get a present to open on Christmas Day!
Brighten up for the Kids is a program that they created in 2010 to give to Akron's Children Hospital in Mahoning Valley.
All donations to be dropped off at Youngstown Cycle Supply on Market Street. They will be collecting till Dec 22nd.
Thank you all for your enormous hearts and love!

One day at a time

Chris and I continue to take one day at a time. With Christmas right around the corner, I have a pit in my stomach as each day it comes near but I know Liam would want us to enjoy the season as if he was here! My heart continues to ache as each moment passes and I know that it will never go away. But I also now it's there to remind me of him until I get to see him again someday.
Going to the site where he is laid to rest is a place of peace that we visit everyday. So many come to visit and bring him new things and I am so very blessed that everyone loves him so much. Writing my blog was one of the best decisions I have made. Not only to help me cope with my feelings but to have all of you get to know him and love him so much. Our journey had so many ups and downs but everyday he was here with us on earth was the best days of my life. I am still not able to go back and read each post and relive it again but knowing its there to capture his life was a blessing in its own. I hope his life will help give comfort to someone else going through similar situations with a congenital heart defect or even someone else who has lost a child or even bring us all back to realize what is important in life. I never realized how many others have lost a child. My heart breaks for all of them since knowing how they feel. But they would probably all agree when I say.... Even though he is not here with us and I don't get to see him each day and watch him grow. I am still a mother to a beautiful baby boy. Even when Chris and I decide to try again to have more children he will always be our first and they will know everything about their big brother. If anyone asks if we have children I will always say yes. I never want to shut down and pretend none of it happened. I would do it all over again if I could.
Today Chris and are setting up a Christmas tree at Liam's site so he can experience the joy of this time of year. I also feel like it will remind Chris and I what Christmas is truly about.
Thank you to all that gives Chris and I the strength to get through our days.


This was posted on my blog and I love it. Thank you to whoever sent it. These are the things that help me cope. Love from all of you and love from our God above!!

What makes a Mother

I thought of you and closed my eyes And prayed to God today.
I asked what makes a Mother And I know I heard him say.
A Mother has a baby This we know is true.'
But God, can you be a Mother When your baby's not with you?
Yes, you can, He replied With confidence in His voice
I give many women babies When they leave is not their choice.
Some I send for a lifetime And others for a day.
And some I send to feel your womb But there's no need to stay.
I just don't understand this, God I want my baby here
He took a breath and cleared His throat And then I saw a tear.
I wish I could show you What your child is doing today.
If you could see your child smile With other children and say:
"We go to earth to learn our lessons Of love and life and fear.
My Mommy loved me oh so much I got to come straight here.
I feel so lucky to have a Mom Who had so much love for me
I learned my lesson very quickly My Mommy set me free.
I miss my Mommy oh so much But I visit her each day.
When she goes to sleep On her pillow's where I lay.
I stroke her hair and kiss her cheek And whisper in her ear.
"Mommy don't be sad today I'm your baby and I'm here."
So you see my dear sweet one Your children are ok
Your babies are here in My home And this is where they'll stay.
They'll wait for you with Me Until your lesson is through.
And on the day that you come home They'll be at the gates for you.
So now you see what makes a Mother It's the feeling in your heart.
It's the love you had so much of Right from the very start.
Though some on earth may not realize
You are a Mother until their time is done.
They'll be up here with Me one day And you know you're the best one!



Posted by Anonymous to Our Superhero's Journey at November 24, 2012 3:44 AM

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!

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!!