{Hurt}: What not to say to a Parent who's lost a child

In a time like this....like losing a child...it is hard to know what to say to someone. How to express your sincerest condolences without overstepping any boundaries.

But how would you know what to say? It's not an everyday occurrence that someone you know loses a child. So how? The simple answer is you don't know...there isn't a book out there on "What to Say to Grieving Parents".

I know a lot of people have been worried about if they've said or done the right things and so I thought that I would reassure you that yes I remember these things but I honestly don't remember who says them. The words sometimes are just so painful....it's like a knife ripping my heart out. But I know...with my whole entire heart that they are not meant to hurt me. These words are meant to comfort me...to bring me strength. And I also know I have been on the other side of things...before losing Reid...where I have said things like this.

So here's a couple of the things that are best left unsaid...

"I'm so sorry for your loss...but at least you have Averee." - Well sure I am beyond grateful to have Averee...she is my whole world. But one of my dear friends said it best...She said...if my 4 year old died...I wouldn't be like awwwww well I least I have the other kids. A child is a child...it doesn't matter their age...Heck it doesn't matter if they have their birthday/angel day all at the same time. They are a child and to a parent they are their whole world. So I lost part of my whole world the day I lost Reid...and it's a part that no one can ever replace.

"You know...it's better this way." - Ok. Sure...my son does not have to suffer...for that I am grateful but seriously....it is better to live without my child then with him? I want him here...with me...with his daddy and with his sister. I want his body to be healthy and I want to have the family that Ian and I "planned" for. So the pain in our hearts does not make this a better way.

"God always has a plan." - This one...this one is hard. Because I do believe that God has a plan for each of us...but this statement is not comforting...because it is a painful reminder that for some reason God picked me and not you. Why did he pick me to have my baby in heaven? Why did he pick me to see the hurt in my husbands eyes and why did he pick me to have to try to explain to our daughter that her baby brother is never coming home?

"You must be so strong that God brought you to this." - This one didn't really resonate with me until attending the support group that my husband and I attended and this was brought up. I knew that it was bothering me but I couldn't figure out why. And someone in the group stated it so simply. They said...ok so you are saying I am so strong that God sent me on this journey...so you are saying this is all my fault. You are saying that if I was a weaker person my child would have survived. You are saying I did this to my child. Crazy rationale? Well maybe...but I think this is how a lot of parents who have lost feel.

"You are so young...you can always have more children." - To start for anyone who has lost a child they want that baby and that baby only. Bottom line. It goes back to the first one where one child does not replace the next. Plain and simple. Second, there are situations like for my husband and I where we do not know why our son's body failed him. We have zero answers and included in those zeros answers is the fact that we do not know if we can have more children. We don't know if any future children we may have will have their bodies fail like Reid's did. We just don't know. So yes we are young...but we may not have more children.

This last one I heard recently and it struck me like a bolt of lightening....right through my heart. What hurt even more was I could see how pained that person was after they realized what they said. It broke my heart because I don't want to see anyone else hurt. It is someone I don't know very well but saw and they came up to me, saw Averee and said....I heard you are going to have your second baby...congratulations. As soon as the words came out of their mouth I'm sure they saw the look of shock on my face...and they remembered. I think it is common for people to put those "too painful" moments away in the back of their mind...completely out of reach from reality. I mean why would you think on a daily basis about losing a child and what it must feel like...so when someone loses a child it goes away from your thoughts. For a parent this is not possible. You are consumed with your whole being...with every moment...that the unimaginable happened. The person apologized profusely and like I said earlier...I know each and everyone of these things are not meant to be hurtful.

You see...this face...this beautifully...perfectly...angelic face can never be replaced. This face...this is the face of my son. And no one will ever have this face again. 

And again...this is not meant to hurt any one's feelings...like I said...I don't even remember who has said these things. Each time I hear something like this my mind goes to a completely different place...almost like a survival instinct...where my only concern is not about who I am talking to but how am I going to keep going on with a smile on my face so that that person....does not have to feel this pain...even if it is only for a brief moment in time.

{28}

Twenty eight years ago I was born.

Twenty eight years since my parents first became parents.

Twenty eight years living on this earth.

I have worked hard, I have have gained friends that have already lasted a lifetime, I have family who have been my friends and have been by my side my whole life. I have a loving husband, two beautiful children and an amazing career (actually...I have two amazing careers!)

To say that I am blessed is truly an understatement.

Thank you to everyone who has been with me the last 28 years and thank you to everyone who has joined me along the way! Thank you for providing for me, guiding me and loving me. And mostly importantly thank you to our Heavenly Father for allowing all of these blessings into my life!

And for a little fun...I've always thought that my children look like me...not everyone agrees :) But I saw this on another photographers page and I thought it would be fun...enjoy!

(And yes...Reid was missing those chubby checks and his poor hair was all thinned out from all his "haircuts." But I still see Averee 1000% :) )

So what do you think? Is it just me??

{Happy}

I've noticed that my writing over the last few months has been rather....depressing.

I think when I'm having one of those hard days writing is what I turn to. It is how I make it through. 

It is important to know however that I am....Happy.

Sure, I expected my life to be different right now. I had imagined myself stressed balancing two kids while trying to balance the rest of my life. I imagined myself with a new baby to snuggle, taking walks in our double stroller, reading stories snuggled on the couch with a baby on one side and my girl on the other.

And even though that is what I imagined it is not what God had planned for me. And instead he has shown me a whole different world. Now I'd be lying if I said I'm sooo happy with his decision to bring Reid to him so soon but I'd also be lying if I said that I am not happy. 

I still have my beautiful daughter who I get to spend my days with. I have my incredible husband who somehow...no matter what...can always make me laugh. I have amazing parents who have stood by us through everything and have offered us so much support. I have friends who have embraced me. I am surrounded daily by so much love and it's just impossible to not be happy. 

Sure I have moments...daily...that I am sad that my boy is not here....but I also have moments...all day long...that I am happy. 

I believe God gave us a gift...not only did he give us 4 days but he also gave us a lifetime of gratitude. We embrace the hugs, the smiles, the kisses from our daughter more then we used to. We smile when the sun is shining... and we take time to rest when the skies are crying. 

We live a little more passionately these days and well that...that makes me happy.

Here's a little glimpse of some of the moments over the last few months that have put a smile on my face :)

 

 

{Answers}

Long story short....we do not have any.

You see, over the last 6 months we have been searching. Vigorously doing research, consulting with doctor after doctor after doctor....searching for an answer as to what was going on with our son.

There was never an answer. And there still is not an answer.

The doctors believe it is possible that it is genetic. That my husband and I may be carries of some rare disorder. They also believe that it is possible that it is not. But they also believe that they can't piece it all together and that there is no way to actually test my husband and me and that even if they did it is possible that this disorder, if it is what Reid had, just randomly happened.

They have no way to give us answers.

They have no way to calm our fears that our daughter might have to experience something like this.

They have no way to help us decide if we should have more children or not.

They have no way to give us peace.

I wish that I could say that I fully understand that God has a plan for our family...but I don't.

I ask Him often...why us? What makes us so unique...so important that we have to experience life without our son. I ask Him often why he allowed me to do it all "right" yet still end up with a sick child. I ask Him why a lot.

I think we will always kind of stay in this state of limbo...unsure of how to travel this world now. I do know that I will continue to look to God for guidance. He obviously had the faith in our family to take this journey so I feel it is important for me to share my gratitude for Him.

I know that we will never have our answers. But I know that God will lead us, as long as we ask him to, towards the peace that we are so desperately searching for.

PS It's the perfect moments like this that give me faith. 

Photo: Michelle C. Photo

{A letter to Reid}

I've been debating whether or not to share this here but for me part of healing is sharing. I think everyone finds a certain way to grieve and I have found comfort knowing that my words have helped others. I cannot thank each person enough who has taken the time to leave a comment, send me an email or who has just simply taken the time to read. I really appreciate it. 

This is a letter that I wrote to Reid for the support group that my husband and I have been attending. Honestly, I was terrified to write it and I was even more terrified to share it with my group. But after I felt a sense of calmness within....a sense of peace. 

This is one of my favorite photos. One I will cherish forever. (www.michellecphoto.com)

Dear Reid,

My sweet boy.

You know life is funny. From the moment I found out I was pregnant I knew you were my boy and I knew you were special. I don’t know how to explain it I just knew. And I was so excited. I would have my little boy! Your dad and I struggled with deciding on a name for you. It took us almost 5 whole months but looking back I wouldn’t have it any other way. You are our Reid Andrew...our warrior. 

It has been a little over 7 weeks since we first saw your face. So much anxiety and so many emotions lead us to that day. It was the most perfect, most nightmarish day. We were so excited. Our boy....our precious, beautiful baby boy was here. You were seriously the epitome of beautiful. Such full, soft, dark brown hair. Perfectly smooth, ivory skin. The most adorable nose in the whole world and you had the most beautifully, crooked little feet that I have ever seen. It was also the day that we realized all of the unknowns from the last few months were turning into our worst nightmare. You were very, very sick my boy. I longed to hold you, to kiss you, to be with you. When I first saw you I held your hand and you open your eyes. You looked right at me.Right into my heart. We became a part of each other forever at that very moment.  

We watched you fight for 4 days. Four glorious days that we were able to share with you. Days that will forever be a part of us. 

I think my heart hurts most when your big sister talks about you. She loves you so much Reid and I see so much of you in her. You look just like her and I feel blessed that each time I see her face I see you... Averee loves to pray to you and she tells almost everyone that “Baby Reid is in heaven...with Jesus.” She is proud of you. She is proud to be your big sister and I am proud to be your mother. 

You have changed me Reid Andrew and I hope that because of you I will be a better person. Your tiny little life touched so many. You left your perfectly, crooked little footprint on so many hearts. 

I often wonder what you would sound like, what your smile would be like, what your favorite color would be. I wonder how my heart would melt the first time you said “I love you Mommy”. I wonder if you would have been stubborn just like your big sister....always fighting for your independence. I wonder if you know how much I love you. 

The only question that does not find me is how proud I am to call you my son. I am proud of you and I will always be. I will always be thankful for you. 

I struggle with my “new” world. Knowing that I will never get to hold you or kiss you again here on earth. Knowing that I will never be ignorantly blissful again. And I struggle with all those who are still “blissful.” I struggle with all the unanswered questions. With the ache in my heart and when I see the ache in your daddy and your sisters heart. And I struggling knowing that no matter what I do I can’t have you in my arms.

I truly thought I understood what pure, unconditional love felt like before you came into my life but I don’t think anyone can really understand until they have to let go. The day your Daddy and I had to say goodbye...The day we had to give you to the angels was the day I learned the most important lesson of my life. I learned how to be grateful. It is something I thought I had mastered a long time ago but that day I realized that there are so many people who never got to met you, who don’t know the pride of being your mommy, who never get to know the joy of having their own child and who never get to see the amazing power of God. He really blessed us with you. He chose your Daddy and I to be your parents. He chose us to learn about this unconditional love. The kind of love that knows no boundaries. That can move oceans. Can touch hearts. He chose us. 

I hear your song often and your sister requests for me to sing her “baby brother’s” song most nights before bed. I miss dancing with you each time it plays. I miss keeping you safe. Feeling your sweet kicks with each sway. Each time I hear your song...it brings me back to you. 

One of the gifts we received after you left us was a little wooden heart, with a hole craved out that holds a picture of you. I think that is the best way to put it....You are the hole that is in my heart. A hole that I am grateful for because without it I never would have had you. A hole that I will keep with me forever. 

My sweet boy. You will always be a part of our family. A part of our hearts and a part of our soul. You will always be our first boy...our first son. We will carry you with us for the rest of our lives.

I love you Reid Andrew. Forever and for always. Thank you for being my son. 

Love,

Mommy

{Grandparents}

I think a lot of times when someone loses a child all the focus goes to the parents of that baby.

How awful it must be for the mommy and daddy to live without their baby (and it is). How their hearts must hurt...All...the...time.

I think it is important to remember though... the baby has Grandparents.

Imagine this...You child tells you they are going to have a baby. You're so excited. You start preparing because you are going to be a Grandma or Grandpa. You are going to get to spoil your grand baby...snuggle them when mommy and daddy need a break, play with them, feed them lots and lots of cookies. You are so excited because you remember the joy of having a baby and you are so happy because your child gets to experience that joy.

You tell everyone you know that you are going to be a grandparent. You help your baby prepare for theirs. You tell them stories about when they were little. You remember how wonderful it was to hold your baby.

But then things change. Things go wrong. You child tells you that their baby is sick. You think..."How can my baby's baby be sick? This is not what I planned for." And then it happens. Your grand baby is gone.

Sometimes I think it must be so much harder to be the grandparent of a baby in heaven. Not only did they lose their grand baby....their future...their joy. They lost the innocence of their child. They have to watch as their baby cries...as their baby's heart breaks.

You try so hard to fix it because that is what you have always done. You have always been able to fix things for your baby. But you quickly realize you can't. You can't take this pain away from your baby. You can't take this pain away from your heart.

So sometimes I think it is harder to be the grandparent. And I sometimes I think they would agree.


I should also add that my children are very blessed. They have the very best grandparents in the world and Ian and I have the very best parents. They have stood by our side since September (OK for really our whole lives!). They have cried with us...they have comforted us. And I wish that we could comfort them. All I can say is thank you. Thank you for being the very, very best mommy and daddy and for showing us how to do the same.

{Uninvited}

Grief.


It can follow many things. Really...it can follow any type of loss. The loss of a job, the loss of a marriage or in my case the lose of a child.


I did not ask for grief. I did not invite it into my heart. I didn't have a choice. But when grief finds you...you must make a decision. My decision? To embrace it. 


It is very tempting to want to 'hate' grief,
to see it as the enemy, the unwelcome guest.
Instead, try opening yourself to grief...
ask it what it has to teach you.
Ask it what it is training you to do, to be.
Ask this uninvited teacher into your life
and notice how things being to shift.
Remember that grief never ask you to let go of love.
~Ashley Davis Prend


Through my grief I have decided to love deeper. How? I am learning to embrace even the smallest of things. I am learning to hold my baby girl a little closer, I am learning to tell her her brother's story. I am learning to make sure my husband knows that I appreciate him. That I love him more now then I ever thought possible. I am learning that even though I have been hurt by others(unintentionally of course) as I grieve that they are trying and they are just as lost as I am. I am learning that there is no guidebook for life...there is no guidebook for life without your baby. 


I did not ask grief to join my life and although I wish I could say that I have two children here on earth the fact is I don't. But I will do anything I can to make my baby boy and my little lady proud of me. I will do anything I can to make sure they know they are loved...know that they are important. I will do whatever it takes to be more passionate about life. To stop worrying about the what ifs and whys. I will learn to accept that there is a great plan for me and my family. That God is great. That he will guide us down this path...that he will never sway from us. 


I will never understand why Ian and I were chosen to be Reid's parents...the mommy and daddy of a baby in heaven. But I will always be grateful. I will open myself to this grief because by opening myself up I will bring myself closer to my sweet boy. I will bring myself closer to God. 

{Holland}

Five weeks ago my husband and I started going to a support group called HEAL. For anyone who has had a miscarriage, stillbirth or infant pass away I highly recommended a support group. It has  been so wonderful talking to others...sharing our stories...and realizing we are not alone in our journey. We have met some wonderful friends and cannot imagine where we would be right now without our group.

Each week the leader of our group shares a story, a poem or some sort of writing. This weeks I thought was very suiting for the journey that my family and I have started and I thought I would share it. It was from the Rocky Mountain News, October 29, 1990. It is a very unique way of explaining what this journey is like. I hope you enjoy.


Welcome to Holland

I am often asked to describe the experience, to help others understand it, to imagine how it would feel. Well, it's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks, and you make your wonderful plans. The Coliseum, Michelangelo's David, the gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags, and off you go. Several hours later, the plane is preparing to land. And as the plane is landing, the pilot makes an announcement: "Welcome to Holland."

"Holland?!?!" you say. "What do you mean, Holland? I signed up to go to Italy! All of my life I've dreamed of going to Italy! I'm supposed to be in Italy!"

But there's been a change in the flight plan. They've taken you to Holland, and there you must stay. The important thing, however, is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.

It's really just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there a while, you'll catch your breath. And then you'll look around you and notice that Holland has windmills, Holland has tulips, Holland even has Rembrandt's.

But everyone you know is busy going to and from Italy, and they're all bragging about what a wonderful place it is. And for the rest of your life, you will say "Yes, that's where I was supposed to go. Italy is what I had planned."

The pain of that will never, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special and very lovely things about Holland.




Such a beautiful way to look at our "new" life.

{Big Sis}

 Sibling love.

Honestly, I was so excited to see how Averee and Reid would grow together. To see them be there for one another...help each other out. It has weighed so heavy on my heart that Averee and Reid will not get to experience this sibling relationship...one I so wanted for both of them.

But do you want to know what? Even though Reid is not here on earth their relationship seems to be thriving. Averee loves to talk to her baby brother and yesterday she did just that. She looked right up to the sky (as she always does when she talks to him) and just started talking.

There is so much wrong with these photos (i.e. the up the nose shot!) but at the same time so much that is right. This is a moment that I will be able to show Averee one day...show her how much she has always loved her brother :).

Play time!

{Angels}

I've always considered myself religious...been a true believer in God and the life he gives us.

Lately, though, with everything that has happened over the last 5 months I have been searching for answers...searching for hope.

So I prayed. I prayed and still pray a lot.

Last week I received an email from a friend. She was letting me know of a lady who speaks to angels. To be honest I'm not sure what my feelings are on this but this post is not to debate (so please no insensitive comments). However, after checking out her site there was a part that just stuck out to me...it said that you have to pay attention to sometimes the most trivial things in life... because those "trivial" things can be an angel speaking to you.

Now I have always, always believed in angels. I believe they watch over us...I believe they help us to be better people.

I also believe that with the loss of Reid I was losing myself. So I prayed for the angels to please send me a sign that my boy...my beautiful, perfectly angelic boy was safe and was OK. Here's where the story begins...

A dear friend recommend a book for me to read called I Will Carry You. I immediately went to Amazon and placed it in my shopping cart but I didn't order it...this was on a Wednesday. On Sunday I received the above email that I was talking about. That night (I still had not ordered the book although I so desperately wanted to read it) I prayed to angels.

The next day as I was going about my daily business...I went out to get the mail. Now I'm sure you can tell where this story is going now but don't worry there is more.

There...lying in my mailbox was a package. We have received so, so many beautiful cards, letters and gifts but as the weeks go on the mail slows down so I was a little surprised to see this package and assumed that my husband must have ordered something.

When I got inside I saw that the package was addressed to me....hmmm. I opened it and wouldn't you know there was a copy of I Will Carry You waiting inside. This gift came from one of my amazing "sisters". She sent me the most beautiful note but most of all she sent me a beautiful gift....knowing that my son was OK :).

And if that wasn't enough there is more. That weekend (Saturday to be exact) my sister in law and I hit the antique fair. She was out shopping for things for her new home and I was out shopping for well..birds. Weird. I know. But I have had a strange "obsession" with birds for the last few weeks. Would you believe it if I told you that through all 5000 acres (OK I tend to exaggerate) of the fair I only managed to find one bird. One. Uno. Un.

I left. A little disappointed as the one bird I managed to find was well...Ugly. But I bought him anyways.

Well, last Tuesday the husband and I went out on a date and my parents watch the little lady. When we arrived my mom had a gift for me. She told me it wasn't anything fancy but wanted to see if I could figure out why she bought it for me. Now I should preface this by saying...I did not tell my mom of my new "obsession" with birds. I opened the bag to find a perfect, little blue bird. She bought it for me because Reid's song is "Somewhere over the Rainbow". But I know. I know in my heart that an angel led her to buy this. To answer my prayers.

So I believe in angels. Do you?

{Four Weeks}

Four weeks.


Today...my son. My beautiful, angel son should be four weeks. 


And technically...I should still be pregnant.


I know....shoulda, coulda, woulda. 


It is weird how my life has changed so much in four weeks. Sometimes I feel like I am dreaming and that any moment I will wake up with my baby safely in my arms. Sometimes I am so obsessed with "what went wrong" that I cannot focus on anything else. Sometimes I am sad as I think of what life could be like with Reid here. Sometimes I worry that my usually, happy, carefree self will never return. Most of all I miss my ignorant bliss. You know...that state of mind where bad things can never happen to you. 

(This is what ignorant bliss looks like. Our little lady when she was 4 weeks old. Her brother looked just like her.)

I think one of the hardest things I struggle with is that since September 2, 2011...that day when my whole world changed...we have never found answers to the "what, how, why." We still don't know what caused things to go so terribly wrong. We still don't know why Reid's wee little body failed him. And we might never know. 


A lot of people have so kindly told me how brave I am for sharing my story and I appreciate it so much but really I'm not brave. You see I'm not one for talking about my feelings...I never really have and probably never will be. This is my way of expressing myself and my way of hoping that my story can help someone else who might have to endure this awful heart wrenching pain. This is my way.


I have realized through all this that that proverb "It takes a whole village to raise a child" is actually more true of my life now except for it goes more like "It takes a whole world to pick you up when your whole world has crashed down."


We are blessed...we have an amazing family who has stood by our side and I know will continue. We have amazing friends. We even received a couple of beautiful, wonderful gifts this week from a couple of my sorority sisters. "Sisters" that I haven't really spoken to very much over the last few years but sisters who took their time to send us a little something...sisters who I feel so much closer too just for showing that they care. 


We have also been blessed with others who have shared their stories with us. Friends of ours who we had no idea were part of this "club" until now. Friends who when they tell us they know how we feel we cry because we know unfortunately they do. 


So today...my ignorantly blissful friends (and I mean that with love...I wish I still was)...please remember how lucky you are. Tell someone you love that you love them...kiss your child one extra time. Just be. 


Today...and everyday I remember my Reid. My boy. My son.

{Our Boy}: Angel Day

I've been dreading this post....like A LOT.

However, our story...our sweet baby boys story is just not complete without it.

I'm sure there are a lot of grammatical errors...as I'm sure there have been many in my past posts. But this is written from my heart. From my heart to yours, to my daughters, to my sons, to my husband. It is written to anyone who may be suffering. It is written with love. 

December 18, 2011

So we went back to our room and started our routine...pumping, teeth brushing etc etc. And then went to sleep. At 2:30 am the phone rang. It was Reid's nurse.

She said that things weren't going so well. He oxygen levels were dropping and they were unable to stabilize him on the ventilator so they had to switch him to the oscillator.

How could this be??? Just a few hours before he was doing...well. We jumped up and headed up to his room.

He still looked like our little boy. The oscillator made his breathing a little "different" but he was still there. He still was moving around...he still was opening his eyes...and was still maintaining his oxygen saturation...he was still our perfect boy.

After a little while we were beyond tired so we decided to go back and get a little sleep so that we could be rested for the next day.

Just after 7 am Sunday morning Reid's doctor came into our room. Now for a doctor to come all the way down to see us after a 24 hour shift usually is not a good sign. He told us he was very concerned and that Reid was just not doing well.

We got up immediately...got ready and ran upstairs....OK in all fairness my sweet husband pushed me to the elevator. We were both silent. I couldn't see or hear anything around me.

Arriving at his room was awful. Our beautiful, beautiful baby boy was lying there but...he wasn't really there. He was gray. He was not moving...at all. He was not opening his eyes. He oxygen levels were low. His blood pressure was dropping. He looked like all life had left his little body. We cried. I think our minds knew how bad things were but our hearts were just not ready to accept this fate.

Shortly after we arrived Reid's neonatologist for the day came in to talk to us. He decided that the oscillator was definitely not the solution and that they were going to attempt to place him back on the ventilator to see how he would do.

Immediately he looked better. His oxygen levels went up, his color returned. He even started to move around some. Was this our miracle? Was it happening? Were all of our prayers being answered? I was so sure he was going to do it. Reid...my little boy...was going to prove everyone wrong.

Over the last few days our family had made plans to come and visit Reid. Our parents were there, our daughter,  my grandmother, my aunts and my uncle. They all arrived. First, we brought Averee in to see her brother...we spent some time as a family of four. Just us and our babies. It was beautiful. The  NICU's policy, however, is that there are only two people in the room at a time so Ian and I went out to the lobby and Ian, my dear sweet husband, started taking everyone in...one at a time. Averee went home to take a nap.  During this time the EEG tech had arrived to start Reid's first EEG. After a few family visits she had to move the machine around and had all sorts of wires everywhere so we decided it was best for all of us to grab so lunch and then head back up to see our boy. My guardian angel even found us and offered the "rooming in" room to us so that we could be just a few doors down from Reid.

Things were really turning around for us. We could do this!

After lunch I saw a friend in the cafeteria...a perk...if you will...at being hospitalized at your place of employment. The rest of our family headed upstairs. When Ian and I got off the elevator we headed to the doors to go see our baby boy. Walking down the hall towards us we could see our mothers. They were both crying and telling us that we needed to go in NOW.

My heart broke. Before I wheeled through those NICU doors for the last time I knew what we were about to walk in on was going to change us.

Reid's room was full. Full of nurses, doctors, respiratory therapists and even his EEG tech.

The first and only words I heard from his doctor were...."We're going to need a hail mary." Now I may not work in an ICU but I know in medicine that if you need a hail mary....things are at the end. His neo took Ian and I out of the room as the RT started to switch Reid back to the oscillator to see if they could have any better results. His nurses were trying to start more IV lines because they needed to give him more medication. He was receiving blood, TPN, Lipids, multiple pressures, insulin, fluids and to be honest I don't even know what else.

His blood pressure was dropping. His oxygen was dropping. His life here on earth was leaving us.



I tried to compose myself but the tears were flowing. My heart was finally coming to terms with what my mind already knew...He was gone. Our boy was no longer going to be with us.

We still asked the questions though...."Can he come back from this?" The short answer? No.

The next few minutes went by so quickly yet seemed to last forever. We touched our boy as we watched his saturation and blood pressure drop lower....and lower...and lower.

It was time. Time for us, as Reid's parents...his mommy and daddy...to be parents. We had to make the decision that I wish no other parents would ever have to make again. We had to make the decision to stop.

To stop all of the poking, all the medications, all of the machines.

I'm positive the nurses were being helped by angels that day. They were so gentle with our boy. They treated him like their own. The treated him like the little boy he was. They cried.

As they handed my boy to me...I laid him on my chest. I felt his wee little heart beat next to mine. I kissed his beautiful, soft brown hair.  I felt as he took his last breath. I cried.

We all cried. Our family came in to say their goodbyes. My brother in laws arrived and brought our little lady back to say goodbye to her brother.

We spent the next few hours holding our son. Telling him...telling his soul...how much we loved him and how much we wish we could have protected him. We prayed.

We prayed that God would lead Reid to a beautify,l everlasting life. We prayed that his cousin, his grandparents and his great grandparents would be there to greet him. We prayed that Reid knew how much we love him. We prayed for peace.

We still pray. And will continue to pray...for the rest of our lives.

{Our Boy}: The Big S....

The Big S? Yep, that's right the Big S.

December 17: Surgery Day.

To be honest those 4 days...those 4 very long/short days all kind of blend together. From the IV's, the blood transfusions, all the medications, the overwhelming amount of doctors, having abdominal surgery, pumping, bring Averee to see her brother, attempting to sleep and attempting to process what was going on...it's really hard to kind of keep it all in order.

Surgery Day though was the worst. We (my husband and I) would get up around 3 am each morning (after going to sleep around 1)...I'd pump, we'd brush our teeth ( :) ) and then we would head to the NICU. On Saturday morning/night (whichever way you look at it) Reid had an incredible nurse...to be honest all of his nurses' were incredible but she was extra special. When we arrived she gave us an update on his PICC line placement, all the meds, how he was doing etc etc. She then let us "help" with his care. This was the first and only time that I was able to change his wee little diaper. Now I'm sure many of you are saying...big deal...who wants to change a diaper? Well I am here to tell you that I would do anything right now to be changing his diaper. Anything. She let us take his temperature, get him a little washed up and get him prepared for surgery. We were told earlier in the day that his surgery wasn't going to be until afternoon time on Saturday. So after spending some time with our boy we went back to our room to sleep for an hour or so.

We woke up early that morning...around 6:30...started our routine over again so that we could get back to the NICU to spend time with Reid Andrew. Most of our time with him we just sat there...touching him...talking to him. After a few hours the PHU called (I choose to spend my time in the high risk unit post delivery because I already knew the nurses from my hospitalization in November)...I needed to go back to my room because my doctor was there and my nurse needed to do an assessment etc etc. We all thought we would have time to make it back to the NICU before they took Reid for surgery. About 20 minutes later someone called (maybe my parents...I'm really not sure) to let us know they were taking Reid down.

I panicked.

I needed to see my boy before he went in. I needed to see his face...his beautiful toes.

I hopped into my wheelchair (Hello...I just had abdominal surgery...I was not yet up for running around the hospital)...and we went as fast as we could down to RIO. When we finally made it down there...no one knew where Reid was!?! What?? Finally, we saw his doctor who brought us to the nurse who was expecting Reid...and just a few short minutes later Reid came through the door. We were able to spend a few minutes with him before they wheeled him back. Honestly, I can't even begin to describe the feeling of my not yet 3 day old son being wheeled into the OR. It was awful...I was a mess. His amazing surgeon told us it was ok for us to wait in my room and that he would come and see us as soon as it was completed.

I imagine to most people who have a loved one in surgery that it feels like an eternity. It was about 1.5 hours before Reid's doctor made it to our room. He said the surgery went well but he was concerned because his bladder lacked "tone". He wasn't sure if there was something actually wrong with the muscle or if it had just been "stretched" for so long that it would just take time for it to relax and function correctly. He said that he indeed had a posterior valve and that now it was just going to be a wait and see situation. We would leave the catheter in for a few days and then go from there.

We must have called Reid's nurse 50 times to see if he had returned to his room yet. When they were finally on their way back to his room we rushed to the NICU so that we could be with him.

After a few more hours it was time for me to be discharged. I cried. A lot. I didn't want to leave my baby. I felt helpless. The wonderful nurses of the PHU though told me that they would hold my room for me so that we could "room in" for the night. We decided that we would go home. Take a proper shower. Have dinner with our girl. And then come back for the night. My parents stayed at the hospital with Reid until we returned.

We also had to work on getting my prescription filled. Although I did "well" with the pain...I think I aggravated things a bit over the last few days just by simply making all the trips to the NICU, not sleeping etc etc. This did not turned out to be so easy though and long story short...we never were able to get it filled. Bummer.

When we got back to the hospital we went to see Reid immediately. He looked...good...well as good as a baby could look after having surgery and being hooked up to a million and one machines. We spent some time with him and then headed to our room to start our "routine".



It was Reid's last night on this earth.

{Our boy}

December 15 - 16, 2011

The next two days of Reid Andrew's life were spent with a whirlwind of emotions. Our boy...our precious, beautiful baby boy was here! And seriously...he was the epitome of beautiful. Full, soft, dark brown hair....just like his sister. Perfectly smooth, ivory skin. The most adorable little nose in the whole world and even his crooked little feet (Reid had bilateral clubfeet which is what started us on this journey back in September) were perfect. Ten toes, ten fingers....he was tiny but he was perfect.

However, to go with our joy was the overwhelming worry and concern. Our worst nightmare was happening. We were allowed to touch him but he was hooked up to so many machines and his temperature was not stable so holding him was completely out of the question. We weren't even able to kiss him. So we spent the days just laying our hands on his beautiful head or chest...letting him know we were there with him.

One big concern (besides the obvious of his lungs not working) was that his bladder was full....like really,h really full. We found this out via ultrasound at the beginning of November when I was first admitted to the hospital. We knew he was producing urine and releasing it because a) I had polyhydramnios and b) we saw him release it on ultrasound however we also knew that a babies bladder should not be as large as his was. He urinated immediately after he was born but it wasn't until early Friday morning that he would urinate again a gigantic 150 ml (trust me that's a lot for a baby). We were meeting with every specialist under the sun one of which was Reid's urologist. He felt that Reid must have a posterior valve (which is not supposed to be there). After multiple attempts by nurses and by his urologist to pass a catheter it was determined that he needed to have surgery. That if this continued he would not only be in pain from the filling of his bladder but it would also continue to cause a slew of other problems. So surgery was scheduled for the next day.

Surgery??? On my baby??? How could this be. I am 27 years old and up until December 14 of this year I had never even had surgery. We knew this was what was best for him, though. Each doctor we met with explained the need and offered us the reassurance that this was what was best for our boy.

We took vigil as our boy grew sicker and sicker. We listened as each doctor tried to come up with what was causing all this. We watched as they attempted to place an IV line again and again and again. He even had to receive his first haircut and let me just tell you...nurses are not very good at haircuts. He ended up with two shaved spots on the sides of his head, 9 attempts at placing an IV and eventually a little burn to the side of his head after one of the IV's infiltrated. Finally, Friday night they were able to place a PICC line into his right arm but that was only the beginning.

One of the only things I could think about through all of this was how much I longed to just hold him...I wanted him in my arms...I wanted to take away all of his pain. All of his suffering. Watching your baby lie in his little home and feeling helpless as his mommy is one of the most painful experiences in the world. It just all seemed surreal...Like I was literally just dreaming. The only thing that brought me back to reality was the pain. The pain in my abdomen and the pain in my heart. It was what let me know that this wasn't a dream but it was my life. Our life.

Our life. Our perfect, little, nightmarish life.