Back to life, back to reality

Back to work this past week after being off for 17 months. Craziness. It was such a wierd feeling to go back, especially after completely exposing myself on this blog, and knowing that many people I worked with read it occasionally. But yet, here I am again. I thought I was done with this blogging stuff, but it has been awhile since I've updated Alyssa's development...and well the ICU setting this week had me looking back in Alyssa's "diary" and remembering all too well the sounds of the so familiar alarms and chaos of an intensive care unit.

I've had anxiety for the past two weeks thinking about returning to a floor that has such a different meaning to me now. I've had 2 weeks of sleepless nights thinking about the first time I am going to see someone on long term ventilation, or on nitric oxide, or an osscilator...oh ya, never mind, that is for little people, not big people, or completely full of pumps for meds, or paralyzed and full of edema, or even worse yet...coding. As scary as these things may sound to someone who doesn't work in the hospital, when this setting is a part of your job, you become sort of accustom to these kind of things. I work on a cardiac surgery floor, people will be sick, people will die, but more people will be fine. So my first week back, I open the door to the ICU and of course one of the first things I see is the big cylinders of nitric oxide...ugh...this friggin sucks, can I go home? No. Get over it, this is my job. It's not the same thing. And it's not, well not completely, and really besides a little anxiety which I am really good at covering up, one little meltdown talking to a really sweet nurse in the ICU, and meeting a patient's wife who coincidentally started telling me about twins they had lost years ago....the week was ok and no harder then I thought it would be.

I came home after the week and grabbed Alyssa's little diary that I wrote in when she was in the hospital and flipped it to May 28th..."Things have quickly changed in 48hours...we had two scary calls, the first on Monday to let us know they were going to do a spinal tap to rule out meningitis and the second call to let us know they were putting you on nitric oxide to help increase the pressure...you are on 70% O2, your right lung has collapsed and your color has changed to a grayish...yes I am worried, but you will pull through, you have too, because I can't imagine losing you or Jessica. Also your HR has been close to 200bpm, which is rather frightening. You have pneumonia and have become septic. Tuesday we got another call saying things have become worse, an air leak noticed on x-ray, O2 increased to 100%, so you were put on an oscillator which causes your entire body to shake, and you were given a "paralyzer" medication to keep you still...breathing like a hummingbird. Dr J looked worried in rounds today, she had watery eyes when she told us you were really sick, but she told us we weren't at the point to discontinue treatment yet. We believe you are strong and are going to make it through this, keep fighting and get better soon so we can all go home together. We love you so much, Mommy"

Why do I do this to myself and go back to remembering when Alyssa was at her sickest, when she is sitting here right beside me, healthy and happy. Damn nitric oxide. Next week will be better.

In the past month, most of my worries about Alyssa's development have gone away. I was seriously worried that she would never crawl, and never walk. She seemed "floppy" to me, or low tone, and she tried so hard to get on all 4's but would always flop to her belly. I worked with her, and did everything physio told me to do, but nothing appeared to be helping...I thought for sure she had some form of cerebral palsy. But then one day, in Nfld actually, she decided she was ready and shocked us all....and she hasn't stopped since. She crawls, she pulls herself up, and she's sort of taking steps holding on to our hands, and almost starting to cruise...it happened so fast....our little girl is growing up, and developing at her own pace. So she's still a couple months behind her "corrected age (CA)" (5th percentile), and probably won't catch up to her actual age by the time she reaches 2...in the big picture, no big deal, she's out of the NICU, and she's on the move. She weighs 18 1/2 pounds (5th percentile for CA) and eats more then Emily does. She had a real shitty start to life, but look at her now.

So there you go, back to work, and the chaos of early morning routines and trying to get suppers organized the night before, back to the real world that I so easily forgot about.

Climb to inner peace

(I started writing this June 12 but wasn't able to finish until today June 16th. We had some time to grieve Friday morning, but then we were so busy packing and getting ready to go away for the weekend. We needed to get away, so we went to Oak Island Resort, and had a really great family getaway, I think we will do this every year. We received your messages, your cards, your donations made on Jessica's behalf, and your flowers, thank you for being such great friends and a wonderful family.)

A year ago today... while most of you were sleeping, we were in a parent room at the hospital saying goodbye. Goodbye to our youngest child who was known as "Twin B Manuel", Phoebe, and of course Jessica Elizabeth.

One of the biggest struggles I continue to have with this experience is trying to understand why it was our baby that died. After I delivered the girls, I had so many people trying to reassure me that everything would be OK, and I believed them. Because their friends friends, or nephew, or grandmother were all born at 25 weeks, and barely weighed 2 lbs, and look at them now, healthy active happy kids or adults. And of course I had girls, and girls do so much better then boys do. Do they? I met 3 women at the IWK who all had twin boys, and although some of them may have their struggles...they survived. And look at the 91 year old walking around the hospital...he weighed 1 lb 8oz when he was born... years ago when they didn't have the technology they do today, and he was kept in a shoebox. This is what tears me apart, focusing on what we'll never know and remembering how hard it was to let her go a year ago today. I can normally block this out, but days like today, I can't help but ask myself why? once again. Days like today, makes me think of what should have been but what wasn't. Days like today remind me of how much I really hurt, even when I feel fine. Days like today I stop worrying that Alyssa isn't crawling or pulling herself up, I'm grateful she's alive. Days like today I stare a little bit longer at Alyssa and imagine Jessica. Days like today I hug my girls a little big tighter and a little bit longer. Days like today I want to hide under a rock. And days like today....I remember what it was like to hold my baby as she passed away in my arms.

....

The beginning of the day is rather blurry to me. But I do remember stuggling to try and get the words out at our family meeting..."we made our decision, we will let her go" But of course they didn't come out as clear as that...My whole body was shaking, I was shivering, and crying and feeling like "No, we want more time, we haven't made our decision, we're only saying what we feel we HAVE to say" But I didn't, deep down, I knew. My head knew, but my heart will never know.

We spent the afternoon in the NICU with the girls, my parents and Tammy and Randy. Keith and I took turns. He would hold Jessica, and then I would hold her. He held both girls together and then I did. Keith and I were the only two family members to hold Jessica, which is also something I struggle with. When they were both so sick in the NICU, kangaroo care was reserved for the parents because there weren't many opportunities in the beginning to hold the girls. At the time, I just wanted her for us, I didn't want to share her with anyone because we had such little time with her. I wasn't thinking about anyone else at the time, I wasn't thinking that maybe Mom or Dad would have liked to hold their granddaughter, or maybe Tammy and Randy would have liked to hold their goddaughter rather then just touching her. Maybe Jessica would have liked this too. But I was too selfish to allow this. Shortly after Alyssa was placed back in her incubator, Jessica was wheeled into our parent room...Seeing her in our room was incredibly sad, because we knew what was to come. Jamie, Danielle and Molly were there to say goodbye to their niece and cousin, and Emily was there to say goodbye to her sister. She wanted to touch her. She kept trying to hug her and kiss her, we taped her interaction with her sister to show her that she met her. We never had the chance to take a family picture, which I regret.

I remember Mom asking me many times if we wanted her to stay with us, to help us go through with everything, but I said no...at the time, I felt it was something that Keith and I needed to do alone. Part of me regrets this, but then the other half of me thinks we made the right decision. After talking with many other babylost mama's, I realize that many of them had the entire room filled with family and friends, each having the chance to hold the baby after they passed away. For us, we didn't want that. It was so hard for us. I didn't want my parents to see our baby dying, and also seeing how much pain we were in. I didn't want anyone else to have the images of Jessica that I have stuck in my head. I wanted my family to remember her alive, and remember her looking like a perfect little baby.

To most of you, the pictures I posted on here or on facebook may be difficult to see because of all the lines and tubes and how sick she looked. But to me, when I look at those pictures, none of that bothers me, I see her tiny little eyes peeking up at me as we do kangaroo care, I see her little toes and fingers wiggling around and grabbing at my finger, I see more then the equipment. It is not these pictures that bother me, it is the images I can't get out of my head from our last day with Jessica.

I remember laying on the bed with Jessica on my chest. I felt so sick and so tired but didn't want to move because I didn't want to lose a second. For once we no longer heard the beeping of the COT study, it was a little too quiet. Her ventilator was still on and she was still receiving Fentanyl for pain, but that was it, nothing for us to see how she was doing. But I guess it didnt' matter any more because soon she would be gone. I tried explaining to her why this was happening, and telling her how much we loved her and how much we were going to miss her, but nothing sounded right to me. What do you tell your child when you know that you will be calling a nurse shortly to come and pull out the tube that is keeping her alive? there is nothing that sounds right. As we layed there, I kept worrying about her pain, was she having any? I couldn't tell, she was so calm laying on top of me, she looked so comfortable and peaceful. So I left her there for a very long time...I purposely waited until past midnight, because I wanted her to have a full month of life, not a month minus a day. Keith and I struggled on when to call the nurse. She came when we asked, and was so gentle removing the tube. I have a lot of respect for the nurse who was working this shift. She was good to us, she came when we needed her, but also gave us privacy when we needed it. She was comforting, and knew what we needed. She was clearly upset and crying with us, which made us feel like she really cared, and she wasn't just doing her job. She became involved and that meant alot to us. As wonderful as she was...I never wanted to see her again, and thankfully it was a long time before we did see her, and it was never looking after Alyssa.

....

Jessica never appeared to be in any pain. The ventilator noise was off, the room was quiet other then our sobbing. It was the worst experience in my life. And I can still feel the same pain today thinking about it, that I did that day. Her heart was still beating for many hours after the tube was pulled out. When she finally passed away, we could feel the change in temperature, we could see the change in her colour, but she still looked like Jessica. When we decided it was time to give her to the nurse, she asked us if we wanted to help bath her. And I just couldn't. I couldn't help bathe her seeing how lifeless she now was. I didn't want to have this memory of her. So I never bathed her. Once she was bathed, and dressed up, and wrapped in a blanket, we held her for the last time and said our goodbyes. She no longer looked like Jessica to me, and THIS memory is what I can never forget. This is what I didn't want anyone else to see.

Our life has continued to go on. I like my life, I love my husband, I love my girls, I love my family and friends, but YES I am still having a hard time because I also loved my other daughter, Jessica, and I have memories of her that absolutely break my heart. My faith is definetly shaken. This is what I struggle with, this is my mountain to climb...
the climb to inner peace.

More questions and answers...

Do you want people to ask you about your lost child?

This is a really tricky question to answer. Because YES for the most part I want people to feel they can ask me questions. Talking about Jessica helps me. I know there is not as much to tell as you may be able to say about your 3 year old, where she only lived for a month, but talking about her, even if it is the same thing over and over again, helps me. But I have to be in the right mood for this, sometimes I don't want to cry, sometimes I don't want to be weak and uncontrollable. That is when I will answer questions without emotions. For example, I was at a party a couple of weeks ago and some of my girlfriends were drinking and were feeling a little more daring to say something to me. I'm ok with this, and if it wasn't a birthday party I may have gotten into it a little more. They were very sincere and asking very appropriate questions...but for me, it just wasn't the right place, so I answered rather unemotionally and as brief as possible.

Some of the people I really want to talk with are the people who were there...the people who may be able to fill in all the blanks of the stuff I was too frazzled too remember, like the nurse who was with us our last night, and the nurses the day before and the day after, Sharla, Charlotte, Dr. J. They can answer all of the questions that I've already asked a million times.

Do you initiate conversation about him or her?

Maybe too often. I am asked at least once a week by either someone in the grocery store or someone from the running room how many children I have. Although it would be much easier and more comfortable to say "2 girls", I just can't. I can't leave out the fact that I had 3 daughters. So sometimes this conversation ends there, it often does. But then other times, it goes a little further...because they ask their ages, and then they realize "oh you had twins", so they wonder where Alyssa's sister is...and so depending on my mood, I pick which direction in the fork on the road to travel. Sometimes I'm honest, especially if it is someone I am going to see again, and I tell them about losing my child. Soon I am not going to have any more running buddies because every Sunday lately, this seems to be the topic of conversation, a couple people were obvious they regretted bringing it up, and others chatted a long way about it. But then there are other days when I lie through my teeth. Last week I was having some blood work done. Alyssa was with me, and for small talk they asked me how many kids, ages, etc...So I told her. Then she went on about how busy I must be, and asked where Jessica was...I told her it was very busy, but so much fun to see the girls interacting so much, and Emily just loves her twin sisters, and my parents who live in Bedford with us were looking after Jessica, because I am trying to have one on one time with each girl to give them a little independence and to feel special. Oh and you should have seen them at their birthday how sweet they were dressed alike, because I do dress them alike quite often...It sounded so great as I told it. But then it was time to go, I knew I would never see her again.

How do you commemorate your child? Necklace? Ink? Photographs? What objects or images link you to your child?

I thought about getting a tattoo, Keith more then me, but it just hasn't happened yet. I wear a necklace that was given to me by one of my best friends. It is a heart within a heart, I always think of Jessica when I wear it. I also have a family ring that Keith had bought for me for Mother's Day last year. By the time the ring was actually ready, Jessica was gone. I wasn't able to wear my wedding rings or family ring while in the hospital when holding Alyssa and with all the hand washing. I never wore my rings again until early February. When I finally went to wear the family ring...one emerald stone was missing, I haven't put it on since, and plan to get it fixed before I do. I also have the blanket she had with her the last couple days she was alive. I keep it in Alyssa's crib.