I can’t quite grasp the idea that we’re having another baby. I’m now almost 17 weeks; almost half way done. I did start craving ice today and the smell of the parking garage is intoxicating, so I must be pregnant because pregnancy is the only time that happens, but I don’t really feel pregnant. I still it into my normal clothes, I have only gained 4 lbs, and I am just starting to see a little pouch. I’m sure the more the baby moves, the more I’ll feel like this is really happening
Two years ago at this time I was answering a zillion questions as to my medical history. The nurse doing the intake was trying to make conversation, but I just wanted her to finish her questions so that I could get back to you. You were pretty out of it – the way you spent most of your time in NICU. It wasn’t your fault-they just had you on so many paralytics and narcotics in the hopes they would help you heal. We used to joke that you couldn’t give us a bad time as a teenager because you had already put us through the ringer during your first 13 days.
I still remember your medicinal smell, although the image is fading. I wonder sometimes when I will no longer be able to conjure the smell at all.
I remember your dark black hair. A nurse washed it one evening while Daddy was with you. You looked like a rockstar.
We love you always, dear little boy.
Tomorrow marks Joey’s second Angelversary. I remember the details of that day with such clarity. Although two years later, I wonder if the details are as they occurred or if my memory is altered, I trust that most of the recollections are true.
The weather in Minnesota today was similar to the weather the morning of January 23, 2010. I awoke that morning to freezing rain. We knew that the lung biopsy results would be back sometime during the day. We also knew that the cut of the lung taken for the biopsy was normal on the outside, and abnormal inside. I couldn’t shake the feeling that my life as I knew it was about to change.
I scraped my car windows. I stopped at Target on the way to the hospital. Molly needed dog food. A voice in the back of my head told me that I wouldn’t have time to stop later. I bought a 17.6 pound bag of Beneful and a Keurig K cup carousel. Why I thought I needed to buy the carousel that day, of all days, is beyond me but if felt like some sense of normalcy. I bought the coffee maker the day he was born. Strange irony that I bought the carousel the day he died.
I arrived at the hospital as they were finishing rounds. They didn’t say much, deferring the discussion until later in the day after the results were in. I read to him, held his hand, talked to his nurse Joyce who had been one of his primary care providers during his stay. It was a Saturday so the coffee cart was closed. I drank water with crushed ice instead.
About noon, the doctor told us the results would be sent over in half an hour. Joyce asked if the next half hour would be long. My only thought was that it was the last half hour I could pretend my little boy was coming home. I wanted to be wrong. But when Joyce opened up Joey’s medical record, I read in her face that I wasn’t wrong.
The doctor called us to a conference room. There was also a fellow, and Joyce. The doctor told us the diagnosis – and the prognosis. We were advised that no further treatment was warranted. We were told that we would have some time to remove him from support, but not a lot of time. The circuit was failing, and Joey’s body was deteriorating.
We went back to see Joey. They pulled the sheet around his cradle. It was so claustrophobic. Joyce worked well beyond her shift making arrangements for us. She contacted LifeSource, and Now I Lay Me Down to Sleep. She took handprints, and footprints, impressions of both in clay, and locks of Joey’s hair.
Tim and I had both driven to the hospital separately. I texted my family to see where they were with John. They were at the zoo. They left for home as soon as they received the text, arriving there before we did.
They knew by our faces that the news wasn’t good. We told them Joey’s diagnosis and that we were removing him from support that evening. Tim called his family; my mom and laura handled the calls for me. I found clothes for the photos. Laura promised to take John to get his haircut. The length of his hair seems like it is something that should have been so irrelevant on that day. But it was going to be the first, last, and only time we would have the opportunity for family photos. And Laura understood all that without me having to say any more.
I wrote Joey’s last CaringBridge post. I would write as me after his death.
We went back to the hospital and hung out with Joey. LifeSource came. We answered what seemed to be a million questions. I just wanted to be with my son.
They transferred Joey to a room in another wing, where families whose babies get to go home go to learn how to care for them before they leave NICU.
My parents and Laura brought John. The staff gave him a quilt and a book that had been donated to the hospital.
They deintubated Joey. He didn’t need the ventilator to breathe – he was still on ECMO – and I wanted to see his sweet face. They disconnected his chest tubing which had been put in place to monitor the incision. I dressed him for the only time. I put him in a long sleeve onsie and wrapped him in a blanket my godmother’s sister had sent at Christmas time for him.
They brought in a chair, and transferred him from his cradle to my arms. I had to be careful because of the tubing in his neck. He was on high doses of fentanyl to make sure he wasn’t in pain. The photographer snapped photos. John sat with me on my lap. He talked to Joey, held his hand, gave him a kiss. Tim stood by the chair. We took turns holding Joey. I asked if my mom wanted to hold him. She did. My father and sister held him too.
My mom, dad, and sister took John home. Tim and I held Joey for a bit, and then told the staff we were ready for clamp off. After he was ready, they handed him to me and I sat with him on the bed. I cried, and talked to him. We told him how proud we were. We told him about the many people waiting for him. He fought a good fight. I wanted him to know that I knew that. And that it was okay to go. Tim and I both told him how much we loved him. He left this world quickly and peacefully.
The fellow came in to check his heart. It had stopped. She told us to take our time. She said, “This doesn’t change anything. Take as much time as you want.” But his passing changed everything. He was no longer Joey. He was just the body that had housed Joey’s soul.
I am not going to lie. I wanted to put him in my bag and run. But it wouldn’t have done any good. He was gone from his body long before I would have reached the parking lot. Still, putting him back in his cradle and leaving him for the last time was almost as hard as holding him while he died.
We both had cars at the hospital, but we took only 1 car home. I am not sure how I fell asleep that night.
It is now two years later, and I still can’t write this without tissues and tears. If it hadn’t been the day he died; if it had just been another day home from the hospital getting used to baby number 2, I am sure I would have remembered none of the details from that day. But it wasn’t just another day. It was the day my little boy died, and the day that a piece of my heart died with him.
Just when I think that John no longer remembers his little baby brother, he will say something that shows me has not forgotten.
Tonight we were looking at pictures of various body systems. We has just talked through the veins, heart, and lungs when he said, “what is it that Joey’s lungs couldn’t do?” We’ve talked about it before, and I don’t want to overwhelm him with information, but it made me so incredibly proud as a mom that he was remembering his brother and that he also wanted to know more about why he was no longer here.
Kids have an amazing matter of fact way of putting life into perspective…
Happy 2nd birthday my dear sweet boy. I miss you as much today as I did right after handing your little body back to the nurse, knowing your soul had already departed. It was a sunny day here – unseasonably warm for January. I thought of you sitting with Papa, and others and having a great time listening to stories and knowing how much you are loved.
Your big brother is 4 now. He is quite the character. He’s funny, sweet, determined, and impatient. He is so good with your sister Ava and I know he would have been just as good with you if he’d have had the chance.
Your little sister is 1, and she is quite the charmer. She is also very determined. She started walking about a month ago and runs around the house after things. She loves to carry her teapot and picnic basket around. I’m sorry that you two will never get a chance to meet. I think you would like each other.
There isn’t a day or moment that I don’t wish you were here with us. I picture you an adorable little two year old, precocious and talking up a storm to whoever will listen. There is nothing that I wouldn’t give to have you here with me for another day. I want to hold your hand, listen to you cry, see your beautiful eyes. I watch the video of your bath over and over.
I love you sweet boy – always and forever.
I didn’t take the day off today. In retrospect that was a bad decision. Most of the day was spent suppressing tears. Two co-workers acknowledged the day. It was comforting, but also hard not to cry. I miss him so much more than I thought I would at 2 years. Losing a child isn’t something that you ever get past. People said that when we lost Joey, and I thought, “It must get easier! How can it not?” And there are easier days, but it is so not something I will ever get over.
A friend posted a link to a blog article about Beyonce and the NICU restrictions that resulted from her delivery. I don’t know if the article is true, but I do know that if someone had kept me away from my baby for one of the 13 short days that I got to spend with him that I would have become a mama bear. I found myself pondering what the best strategy would be to file an injunction requiring the hospital to allow visitation and accomplish this within hours. Probably not possible-but worth a try. It would not have mattered who was in the hospital or what their celebrity status had been in January of 2010. Meeting (or bothering) a celeb would have been so far down on my list of priorities that the thought that a hospital would have to lock down NICU is almost laughable. Sure there were times that the room was closed because they were operating on another child. I understood that. Did they want to operate on the child in the room? Of course not. The child was too critical to move.
I have a letter for Joey, but I will post that separately. Later. After I have finished my day. No more tears until tonight.