Coming Home

Dear Little Lamb,

Yesterday we brought your ashes home. It was so hard. I cried and cried. Although it's hard not having you running around laughing, it feels good (or just better) to have you safely home and done with that leg of this terrible journey. 

It's still so hard to be home where your not anymore. I look at your bed every morning hoping to see you asleep and that this has all been such a huge nightmare. But every morning it's empty. No little voice saying "morning mom. I have school today?" 

I didn't realize before you went to heaven, how much time I really spent caring for you. How much time I spent holding you. I haven't had this much time on my hands since before you were born. I haven't sat here for so long since before you were born. 

I don't know what to do with myself. I'm in such a fog. One minute I think I'm ok and the next, I'm crying and feeling so absolutely broken. 

I'm trying to hold it together sweet boy. I'm trying to stay strong for you and for Lanie and your daddy like I always do. I don't know any other way. I just bottle it all up and I can't seem to stop that from happening. I'm trying so hard to stay strong and trust in God. I think about how strong and brave you are and I'm trying to do the same. I'm just so confused. 

Wanting you and needing you isn't getting any better. I cuddle with your stuffed animals because they still smell like you. I can't stop thinking about you. 

(1 year ago today) 

Dear Sweet Little Liam

Dear sweet little Liam,

My little lamb,

You had us all fooled. 

You always had a million watt smile on your face that covered up that fact that you were actually a sick little boy. This last year you seemed to be doing so well without hospital admittances that we became blind. The feeding tube and feeding problems weren't new to us so we didn't question it when you couldn't tolerate your feed that night. You had chronic lung disease, asthma and sleep apnea so we didn't question it if you required oxygen for a day or two. You had so many qwercks that we were so used to that we didn't think anything of them. To us you were just our little boy. 

You were so brave and you never complained. 

I'm still trying to wrap my brain around what happened. How could you be gone? How can I live without you? How could you be smiling and laughing and running around one day and the next be gone? 

My heart hurts so much. It's like I got stabbed. Then it's like it got mended only to have the stitched tear and the wound open up all over again. There's so much emotion that I can't even process. I cried so much those first few days that's I feel like my tear ducts are dried out. The emotion stays and threats to over take me. I know my brain is trying its best to protect me from further hurt. I think about you constantly. I still cry. I dream about you at night when I get to sleep. I wish I could hold you and kiss you and tell how much I love you. 

I know your in heaven and for the first time, your healthy. Your running around without coughing. You don't need a feeding tube anymore. Your perfect. I always thought you were perfect though. My little boy. 

Tears I've been holding in, trying to be strong for everyone else just over came me. You were the reason I was string sweet boy. I had to be for you. I don't know how to do anything anymore but take care of you. That's all I did your entire life. I don't even know who I am anymore. 

I feel so lost and without a purpose now. I don't know what to do. 

I have to start  making phone calls tomorrow to inform specialist doctors of your passing and cancel any upcoming appointments. I have to call home care and have them come pick up your equipment. I have to donate all your medical supplies and formula so they can help other families out. I have to go through your things and decide what's important to keep and what's not. Problem is, looking around, everything is important. I want it all. I want you. 

We still have to bring you home. Your ashes aren't ready for us yet. They don't know why state gave them such a problem or why they had to wait for the permit so long but it finally went through and we should get to pick you up Monday or Tuesday. It's going to be so hard. Make it even more real. 

But I don't want it to be real. I still expect you to come running through the house. I can still hear your foot steps. I can still hear your laugh. I can still hear the beeping of your machines. 

The worst part of PTSD is reliving this over and over again. It's so real. I thought reliving your birth and NICU was horrible but that has nothing on reliving your death. Watching them do CPR. Watching them do everything they could for you, then seeing the doctor announce time of death with tears in his eyes. Seeing everyone in and outside the room start crying for you. Me telling you to come back over and over again, but you never did. 

I keep blaming myself. Thinking there had to of been some way I could have saved you. But there wasn't. I did everything in my power for you. That's what hurts even more. Not being able to save you. 

When I was praying and asking God to heal you, this wasn't what I imagined. Though you are healed now precious boy. And you have eternal life in heaven. I will see you again sweet boy, whe God says it's time. Forever you will be in my heart. 

Love you little lamb. 

-mommy 

The loss

Tuesday was a nightmare. We're still in shock. On Tuesday December 15,2015 we suddenly lost our son Liam. He was fine, the suddenly not. The doctors are saying they believe he caught a virus that caused an infection and the infection caused a pulmonary embolism. The blood clot from the lung traveled to the corotid artery, stopping the flow of blood from his heart to his brain. They say it couldn't be predicted. 

The ER doc and staff went above and beyond the call of duty to try and save him. 

Two weeks ago Liam got sick. He developed a small cough and a fever. After 3 days was perfectly fine except the cough never went away. It only got worse. Monday morning be woke up with another fever and the cough worse. I took him to urgent care for X-rays to make sure he wasn't developing pneumonia, like I always do. We have protocol in place for a reason. Liam was very active and the doctor said his lungs were clear so the doctor didn't want to do X-rays. So we went home with instructions to return if he got worse and then they'd do X-rays. 

We went home. Liam played and acted relatively normal. He ended up taking a nap, something he rarely did but I knew he wasn't feeling well so it wasn't a big deal. At 7pm he crawled up into bed where I was relaxing and asked for cuddles. We layer there, me holding him as he fell asleep. After he was fast asleep, I put him in his bed.p, hooked him up to his pulse ox and feeding pump. 

At 10pm, he stopped tolerating his feed and de-sating. After hooking him up to 1 litter of oxygen he was fine. It's not unusual for Liam to require oxygen at random because of his asthma, chronic lung disease and sleep apnea. His temp had risen to 103.4. Still it was a long night. He kept waking up every hour or two wrenching and vomiting up stomach acid. I couldn't get his fever to go away. 

At 8:30am on Tuesday the 15th, I got Liam and I around to head back to urgent care. Liam was so exhausted. As we were sitting in the waiting room, me holding him, I looked down to see him a little pale. I looked up and maybe a minute later looked back down at him and his mask had fallen off. His lips were slightly dis colored. Paler than normal. I looked down again a few minutes later and his ears were suddenly blue. I pulled his mask down and so were his lips. I immediately grabbed his hands and his fingers were blue. I turned his oxygen up to 2 liters and as I went to stand the nurse called him back to take his vitals. I got in the room as fast as I could, explained the situation and how he was changing color. Liam was still awake and able to talk. She tried to get a good read on the pulse ox but couldn't get a good read on his heart so couldn't trust the oxygenation.

We rushed to an exam room and they immediately called for an ambulance to transfer him to the hospital. They started a breathing treatment while we waited but with 5 minutes the amublance was there. One of the EMTs thought he'd scold me, telling me that I should never take a kid with such medical to urgent care that you always take them to ER. We have protocol for a reason so I was pissed that he was wasting time and telling me how to do my job as his mother and care taker. 

I followed the ambulance to ER where I found Liam sitting up on the gourney waiting for a room. He looked pitiful s he said "mama". We got him into a room then the nurses tried their first attempts at getting an IV into his right arm  it failed. They took X-rays and EKG with portable machines then tried again for an IV in his left hand. Liam never fought it because he was so tired. It was like he couldn't feel it. I stood there holding his other hand and rubbing his head, talking to him. He looked at me and looked more tired than I had ever seen him. It's like the light wasn't really there anymore. He said "on my I tired. I sleep". I kissed his cheek and told him "I know baby I know. Just close your eyes and sleep. It'll all be over soon". 

Liam closed his little eyes. Next thing I know the nurses head peeked up at the Monitor. Her head shot back to be and asked if he was seizing. I looked down and watched as his eyes opened up, his pupils displayed and he began seizing. His tongue poked out and his little body shook. The nurse yelled for help and I jumped out of the way. Code blue was called and suddenly the room was full. Liam was intimated and bagged and chest compressions started. He had stopped breathing and his heart stopped. 

They tried for IVs but quickly realized the problem was that after years of IVs and blood draws, Liam's veins were just too scarred. They're last resort was a bone IV. They shocked his heart with the baby pads and got his heart working again but he wasn't breathing. I remember someone e approaching me saying he was a social worker for the hospital and asked about dad. Said I should call him and get him down there asap that it didn't look good. I was in shock but grabbed the phone and called Justin telling him to hurry. That Liam wasn't breathing and they had started cpr and it was serious. I called our pastor and told him to pray. Then texted my friend to tell her I needed her. 

When he started breathing it was irregular. The doctor got a portable ultrasound and started looking for a blood clot saying that could be the only thing that could cause him to go down hill so fast. He found what he thought was the blood clot and tried and tried to break it up. 

Our pastor was there in minutes and I remember I ran to him as soon as he rounded that corner. We prayed and prayed and prayed. Then Justin came and we prayed more. I sat there crying and begging God to heal my baby boy, that I needed him and don't take him. 

The room was so full of people. Probably around 20 working on Liam or those getting things for them. I remember turning my head seeing the hallway full of staff watching and praying. The doctor was upset and refused to give up. I remember him asking what time they started cpr and a nurse saying 11:11a. They tried all they could then he decided to try something more drastic. He wanted to use adult meds on Liam, something not usually done on a child and his only way to deliver it was through the bone IV which was unheard of. 

Liam's pulse was so weak. Before they got a chance to use the meds, Liam's heart completely stopped. With tears streaming down his face, the doctor called time of death. I didn't believe them. I said "noo!!" Then he looked at me and Justin started crying and I lost it. I remember hitting the wall and  wailing. Then running to Liam's side saying "no no no no please come back Liam. I need you baby. You can't leave me. No!i need you.... It's ok it's ok baby. I know. I love you so much. I understand. Mommy loves you". 

Everyone was saying they were sorry but I couldn't take my eyes off my baby. Then my friend Amanda was there, with her arms around me and the crying only got worse. I remember not wanting to see him like that, feeling like I just had to take everything off him. I carefully hooked the leads then tried taking all the lads off. They kept saying that they'd do it when they got the clear that they couldn't do it yet but my brain didn't hear them. Finally the one girl nurse that had been there the whole time since we got there placed her hand on mine. I looked at her as she told me they would do that. 

My baby was gone. I felt lost and broken. I still feel lost and broken. 

(More to come)