Saturday, September 12, 2009

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.

Friday, June 12, 2009

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.

Friday, June 5, 2009

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.

Finishing up a year of Firsts

I'm not a regular blogger. Throughout the year, I blogged when I needed to rant, or update, or just pour out my heart. Instead I read other people's blogs.
There is this place where I hang out once in a while. It's a place where I feel I can be myself, even if I'm just there being quiet and not participating. I sit, and read, and cry and nod my head in complete agreement, and think "how do you know exactly how I am feeling?". Well that's easy, because most of the other "friends" at this place, have been through the horror of losing a child. Where is this place where I can be honest and grieve and not be afraid who is judging me??? It's a website called glowinthewoods.com and it has probably been the best therapy to me all year. The women who started the group are real writers, they are good, amazing writers, and every post is so well written that I leave there amazed at how well they can affect people. Often there is a story behind every post and it all leads up to a question at the end. Questions that always make you think, because it is something I've thought about at one point this year. It may even be something that I already wrote about in the past, and then I see it again. I rarely post my replies on the website, but today I decided to sift through some of the questions that I thought I would like to answer, and post them here for you today and in the next couple of days. So here is my first rather lengthy reply to a question I thought appropriate as we approach the anniversary of Jessica's death.


Did you perform a ceremony to remember and honour your child? What was your favorite part of that terrible day? What prayer or poem or song lyrics did you use in the ceremony? What changed for you before and after that day if anything?

As some of you may remember, we had a memorial service for Jessica at the JA Snow Funeral Home. For me, I needed to have a service. I wanted a church service initially, I wanted an open caskett to show everyone how beautiful she was, I wanted a burial service. I wanted so much to happen for this day, and I wanted everything perfect to honour her completely. We didn't have a church service because we couldn't play the music we wanted or add the special touches that we felt we needed. We wanted to play the song "Precious child" during the ceremony. We wanted pictures at the front of the service and Jessica's clothes and blood pressure cuff, and hair and all the little things showing how tiny she was. We wanted to tape the service...although the lady who was suppose to press play forgot. We wanted a good location for everyone so that our friends from work and the IWK could make it, and we thought Bedford was too much out of the way. We couldn't have an open caskett, because her little body was so tiny that they couldn't put enough make-up on her to really show her true beauty. They told me they couldn't do her justice. I had hoped that I could hold her one last time after the wake. To hold her and tell her how much I loved her, and how sorry I was, sorry for any pain she went through. Sorry that I didn't help bath her, or sorry that I didn't spend more time with her at the hospital. I loved her so much, but honestly it may have been better not having a casket, because I'll tell you, holding a dead baby is extremely painful. You can't hold them and be happy for them that they had a good life, that they experienced so much...because she didn't, she had a month. A month hooked up to wires and machines, and her guts cut open and resting on the outside of her body. She had pain. And she missed out on a great life.

Because there was no wake, no caskett, we had her little body cremated, which helped in our decision about burial. At first the funeral director had told me that because she was so tiny, she would have very few ashes. This really upset me. The thought of her entire life being burned and only having a tsp of ashes to show for it, was actually quite devasting to think about. So I was maybe inapropriately pleased when I realized that her ashes actually filled the entire little urn. This was also a very difficult moment, seeing what was left of Jessica in an urn for the very first time. Last time we saw her, she was in our arms, now she was in a container, much smaller then the incubator she lived most of her life. She still rests on our mantle piece, because we dont' know where we want to bury her, or where to scatter her ashes. I really just can't imagine her being anywhere else right now.

Although everything didn't go exactly the way we wanted this day, we did feel a sense of contentment in that she was truly honoured. My favorite part of the day was seeing our coworkers, friends and family. I had no idea who was going to show up for the service. I hoped many of our friends would come, but it was on a Tuesday so difficult for people who lived away to come. That was another thing that didn't go as planned. We wanted the service on Satuday so friends and family could travel and people wouldn't have to take the time off work, but there wasn't enough time to put the obituary in the paper, have everything organized, and also the funeral home was booked. But it didn't matter. Because the chapel was packed. Everyone came regardless of what day it was. Every single one of Keith's close friends (they call themselves the Eds) showed up, I honestly did not expect it. Friends of mine from Fredericton, Moncton came, my Nanny, my aunts and uncle, Keith's aunts and uncles, friends of our family, two full rows of my coworkers, Keith's coworkers, nurses from the IWK, Dr. J.... families and friends from here and away...Seeing the chapel full, helped us so much. It helped us to remember that Jessica's one month alive WAS important and she was honoured. I may have ranted in the past about everyone saying the wrong things to us at the time...but do you think I remember what anyone said to me at the time anymore? Not really, but I remember who was there for us. We needed everyone one of you, and we continue to need your friendships and support, thank you for being there for us.

It has been over a year since Jessica and Alyssa's birthday, and next weekend will be the anniversary of Jessica's death. What has changed since that day? I still feel empty inside, I still feel the pain, but I dont' think about it daily. I do what I have to do to be "normal". For me, thinking about the girls birthday coming up, was worse then the actual day. I cried thinking about running on Mother's Day...and remembering where I was year ago at that time. The day itself was rainy and cold, but it was nice. I spent it with my Mom, ran a half marathon with my Dad, went out to breakfast, limped along the rest of the day. Keith took Alyssa's actual birthday off, we shopped. ALOT. I cried once. I cried when I sang happy birthday to her, it came out of nowhere, but then I was fine. I cried thinking about her birthday party coming up on the weekend. I cried thinking about singing Happy Birthday and looking around the room and seeing 3 sets of twins, Alyssa's NICU survivor friends. On the actual day, I was a warrior. I didn't look at anyone other then Alyssa and I sang and held back my tears as difficult as it was, and I was SO very happy for Alyssa. She is an incredibly happy baby. It wasn't until Alyssa's follow up appointment the following week where I completely lost it on the way home in the car. It was unexpected. I have been to the IWK since, I've been to the NICU since, but for some reason this day, everything hit home, and all those memories from last summer hit me and reminded me of what I've been trying so hard to forget, or push aside. Together as a family and with our friends support, we made it through most of the "firsts" of our first year missing Jessica...This Friday will be our last day of firsts. I can't really say I will ever be ok, knowing what I know, and remembering our loss, but time has helped, getting through our first year has helped, and knowing all of you has helped.

Tuesday, May 12, 2009

video

Today is their birthday. 1 year ago today. This is a video showing how small and very real and alive they both were, despite the many lines, tubes and dressings that nearly covered their entire bodies. The video is mainly Jessica, it was played at her memorial service last June. Alyssa is on the left with the IV in the head when both girls are together...she was the baby who looked more ill at the time, but yet she is the baby with us today, doing super amazingly fantastic.

Thanks to everyone who wished Alyssa a happy birthday today, and who also remembered how very real and loved Jessica was and always will be to us.

Tuesday, May 5, 2009

How are you doing

I remember typing to you last year around this time...I believe it was the second longest week of my life. Trying desperately to hold Phoebe and Ursula in a little bit longer....that week had my 30th birthday in it, also Mother's Day, and of course Jessica and Alyssa's birth day. This year this week again has my birthday, Mother's day and this year Race day, and the girls 1st birthday...Alyssa's 1st birthday party.

People are always asking me "How are you doing" as we get closer to the year mark, which feels deja vu and makes me think back to those days after Jessica passed away. I knew it was a common, normal question, but every time I heard it shortly after her death, I became angry, and wondered why people didn't think before they spoke. I mean really, I just lost my baby, how do you think I'm doing???? Because it was very few people that REALLY wanted to know how we were doing, it's an awkward conversation to some, uncomfortable to most, and not a feeling of welcome, even when people say "I'm here anytime you want to chat". Unless you had a box of kleenex and AT LEAST a half an hour, then you really didn't want to listen. I could see it in people's face's...they would ask the question or say a remark all squeamish and uncomfortable hoping that I wouldn't really take them up on divulging into a deep honest conversation...and relax when I didn't. I told people what they wanted to hear for the most part..."I'm ok, doing as best as I can considering" It felt so rehearsed. Even the people I am closest to, my own family, I said what came the easiest to move on from the conversation. That is my fault. I tried to make things easier for them and myself...which brings me to today.

How am I doing this week? On the positive side...well I don't get angry when you ask me this question for one. But you will still probably get the same response I gave a year ago. "I'm ok, doing as best as I can considering". Also, I can go to bathroom by myself and wipe my own behind without relying on a bedpan, which in my mind was a terribly embarrassing and helpless feeling.
I mentioned a couple posts back that I was going to start training for another half marathon which happened to be on Mother's Day...well I did most of the training, minus a couple weeks off for illnesses and other things going on in my life. And the race is this coming Sunday, I absolutely love race day, and get extremely excited when I see runner's out doing there thing especially Sunday morning. Last spring and summer as we drove to the hospital everyday, I watched the runner's on the Bedford Highway with envy...wishing that was me, this year it was...I wonder if there is a poor shmuck in my shoes watching me as I run wishing they could feel free and independent rather then lost and scared as they face the challenges of the NICU.
So yes, for the most part I'm ok, honestly. Alyssa had a great year free from being admitted to the hospital. In the past month I get very little sleep, and my thoughts on the matter have changed recently. I'm tired, but I'm lucky to be able to get up with her...even if it is 3 am. How we went from sleeping through the night, to regular nightly awakenings I dont' know, but it will pass I'm sure. She will only be small and wanting my cuddles for so long. So I'll take them no matter what time of the day it is.

On the negative this week, I am sore. I've managed to hurt my knee again this year, and also hurt my other leg slightly from overcompensating for the bad knee. I will take the rest of the week off to rest in hope I will feel better race day. I can walk fine, but stairs are a bit of a challenge, especially going down. And after all of this training I am still 10 lbs overweight from where I would like to be, I didn' t lose a single pound with all of this running, pumping and breastfeeding. Weight isn't everything and it is not the focus of my life...but every once in a while when I am getting dressed, I see glimpses of my old self (if I suck in hard enough)...not that I was ever in fantastic shape, but I had more confidence at one point. Maybe my new spanx will help with this ;)
This past year I haven't felt like myself with body image yes, but mainly mentally. I often wonder if I will ever be "me" again. I have caught glimpses of the old me occasionally where I feel very happy and positive and full of energy, mainly while running, but it doesn't last long, I can only run for so long.

I feel disconnected and like some alter ego watching from the outside. I know how I want to be and how I want to feel. But I just can't seem to get there, I can't even explain it. I feel sad and like I've disconnected myself from Jessica this year, which I feel terrible about, but it is how I got through the year. Instead of feeling that closeness to something bigger...our angel or God, that some mother's feel after they've lost a child, I ignored the feelings I was having or pushed aside any thoughts that would make me feel vulnerable. I'm feeling a little lost for words right now. I've never really been good at embracing my feelings, other then here I guess. So...the big question "how am I doing this week?", I'm still here, and I'm ok....doing the best I can considering.

Monday, April 20, 2009

Balloons, cakes, and angels

Wowsers. Alyssa is turning 1 in less then a month. I can't believe it has been almost a year since the day I delivered two perfect little girls weighing less then 3 1/2 pounds together. I will always wish that Jessica could be here with us, healthy, happy and alive, but I know that this wasn't possible. She wouldn't have been healthy or happy...she is happy watching over us now, and watching over her big sister helping us plan her very special birthday. I can just hear her saying... (if she could talk)

Now Mommy, don't be sad, I know you miss me, and I miss you too, but now is not the time. We have some planning to do, and celebrating, with balloons, and cake, and yes....angels too. My twin sister is going to be 1 year old, and she's done so well this year. She deserves a big party with family and friends and happiness. I've done my best to keep her out of the hospital you know, that's my job...to protect her as much as I can. As for me, I know you won't forget me, but let Alyssa have her day...and then in a month time we can cry together on my anniversary. I love you Mommy....

and I love you too Jessica, more then ever.

Wednesday, February 4, 2009

Them vs Us

When you lose a baby, the world feels like it is divided into those who have lost (US), and those who have not lost (THEM). Same feelings when you've been through the full NICU experience...you feel like you can relate and be yourself around those who understand your situation the most vs everyone else who has had a healthy happy pregnancy and delivery, and fortunate to have a happy healthy baby.

I'm sure it has been very obvious in most of my blog that I too have felt like this. Honestly, part of me will probably always feel this way. But I also feel lately that I am starting to become one of you...and starting to come over to the other side. I WAS a very angry person, I was very depressed, to the point where I didn't know if Keith and I would remain together, I spent all my time wondering why us, and really hating everyone else. I too felt SOME of the same things that many of my grief buddies still feel...upset to hear of friends/family's pregnancies, upset to see other pregnant women (well for me it is mainly seeing other sets of twins)....bitter that some people do not appreciate the children they have, and do not treat them as well as I would have treated and cared for Jessica, angry on how ungrateful some people are....etc. I've found that in meeting with my grief buddies lately, sometime I feel more down and depressed after meeting up with them then I did before. I think it is great that we can all "rant" to each other, and I will always listen...but I don't feel the same way they do about everyone. I don't think you are all ungrateful, and I don't think everyone means to hurt us baby lost mamma's intentionally...I mean really, we are all hurt very easily and can take anything that anyone says personally, so I feel for YOU too...

Babies are miracles. They are SO amazing and wonderful, and almost all babies are incredibly cute, and so helpless and innocent. But in saying that, they are also a lot of work, and can be tiring at times. Mom's who have lost their only babies, don't see this side of it, because they've never experienced all the joy and stress of their baby here on earth very long. I've been on both sides at the same time, and although I would take having my baby here on earth more then anything, I still wine occasionally too, but NOT to my grief buddies. I'm writing this because I often feel that people think they cannot "rant" to me about their stressors, or how difficult life can be with one, or two babies especially. Maybe a couple months ago...fair enough I probably would have thought..."how ungrateful you are to complain about how busy and tired you are with one or two babies...be happy they are alive." This was me still feeling sorry for myself...which I will probably continue to do on and off for years to come. But in reality, life can be stressful and tiring. I get exhausted with one baby and an older sibling from time to time, it is not a piece a cake. Thankfully, Alyssa finally started sleeping through the night...she was never a great night sleeper or day napper. Just because I complain, does not mean that I am ungrateful, nor is everyone else. I feel for you mothers who have twins during the busy and hectic times...I want to be you, but also wonder how you do it. I envy you.

Yesturday I went to the IWK for Alyssa's 3rd RSV shot. I met a friend of mine who is a wonderful mom to twin boys. Sometimes I feel like everytime she sees me, she feels she needs to tell me how grateful she is, vision problems and all. I know you are grateful, and busy, and sometimes probably also miss your time to yourself. You are allowed to complain to me G :)During this visit I also saw a young girl in a full body wheelchair with many gadgets. She couldn't talk or move, or eat. I saw her blink. I don't know her story, and I have no right to guess it. But at that moment I knew that I didn't want Jessica to have to suffer like that. I knew that I would never want her to live with no quality of life (even though I know she would never have lived that long), seeing her made me realize that our decision was the right one for us.

The purpose of this post was to simply say. I love my babies with all my heart, but some nights I am so happy it is time for bed.

Wednesday, January 28, 2009

most beautiful girls in the world (to me of course)

(feel free to pause music on bottom right of the blog)


Call me superstitious, call me paranoid...whatever. I kept putting off writing anything about Alyssa in fear that if I wrote how well she was doing, something bad would happen. But now that she has caught her first cold, and luckily it was JUST a cold, not RSV...I feel like it's ok to write something. Cold and flu season really sucks when you have a prem baby. My knuckles and skin in between my fingers are raw from washing my hands so frequently. We've had our share of colds in the household, but with washing and wearing a mask Alyssa kept fairly healthy, no hospital visits and 2 (almost 3) RSV shots later...Another disadvantage of having a prem baby is that we are supposed to try and avoid all the "big toys" as much as possible like the jolly jumper, exersaucer, bumbo chairs, etc. Mainly because they don't help in developping Alyssa's muscles needed to sit up and roll, and can actually enforce toe walking and extension in her legs which we DON'T want as these are often seen in children with cerebral palsy. In a perfect world we would be on the floor all the time with our babies trying to play with them and help them with head control, rolling, sitting up, crawling...Of course this isn't always possible when you have other children.


She hasn't been weighed in a couple weeks, but probably weighs around 13 1/2 lbs at 8 1/2 months and 5 months corrected. She is a super smiley baby, just like Emily was...her entire face lights up when she smiles. And her giggle...it is the cutest thing I have heard in a long time, unfortunately we haven't heard it very often. We must not be that funny. The one day where she was laughing in hysterics was when Keith and Emily were goofing around, it was priceless! She has been to follow up appointments a couple times now, and will go again at 8 months corrected. This is where we meet with the doctor, a nurse, physiotherapist, dietician, and occupational therapist if needed. Developmentally, physio is happy with Alyssa. She seems to meeting all of her milestones, although her 8 month assessment will be a better predictor on how she is doing because she will be moving more then. She is not rolling yet, so I do have to work with her on that, but not ALL babies roll by this point. I am not concerned yet. She did have tight hamstrings a couple months ago, and would only turn her head in one direction, but with catching these things early and doing exercises to correct them (stretches), they have resolved and now I do them much less frequently then I did before. Other then her lungs, all the hand washing and extra cleaning and keeping her away from people with colds and flus (which happens to be most people this time of the year), all of her doctors appointments, and some extra hands on "play time," Alyssa is just like any other baby, except extremely special and probably the cutest baby I know at the moment. In saying that...it reminds me of the other day when I was singing to her "You're the most beautiful girl in the world...." by Prince, although I sound nothing like him. If you know any Flynn's...you know how out of tune we sing, but Alyssa loved it. But then I stopped, because I had a moment of guilt. And started thinking of Emily, she's just as beautiful...so I changed the song, to "the most beautiful baby in he world, yes you are..."...but then I started thinking of Jessica, so I had to change it again to "the most beautiful baby in the world on earth..." My voice, these words, not a pretty site, glad Alyssa enjoys anything out of my mouth. Does anyone else ever get like this, where you say something and then feel like you need to rephrase to make sure all of your children know they are loved equally?? As I read over this blog last week, I started to feel bad again. This blog really was meant to be an update of my pregnancy and how the girls were doing, which it did, but I didn't mention my other daughter, Emily as much as maybe I should have.


She is "the most beautiful 2 year old girl in the world..." And she loves her sister SO much. She is definetly going through the "terrible two's", but luckily I usually only see this side of her when I pick her up from the sitter's, other then that she's good as gold. She is going through a "mommy, mommy" phase which can be frustrating for both Keith and I, but also makes me feel SO good when she wraps her little arms around my neck and tells me how much she loves me. I remember being on bedrest and being so upset that I couldn't lift her or play with her much, I'm pretty sure she's forgotten all about that time. Last night I was reading to her before bed. She picked the book "Goodnight Moon". Alot of memories flashed in my head as I was reading her story. I read this book to both Jessica and Alyssa every night before I left the hospital when they were in the incubators, and before I could do much hands on with them. The things that stick in my mind...










Tuesday, January 20, 2009

Forgiving myself

Things change, people change...I've definetly changed. I say this after going for a run and realizing that I need to upload some new music onto my mp3 player. When I see other runners outside I often wonder what they are listening to. My first song on my "running tunes" is "You shook me all night long" by ACDC. The beat makes you want to run. Well, it used to anyways, not so much today. Have you ever listened to the lyrics of the song?? Probably not the most appropriate song for a mother of three to get pumped about. Today I ran my fastest to "Amazing"...the song you're listening to as you open this blog. Yes things have definetly changed. My outlet of running has become a little more then running itself. As I think ahead to probably the most difficult times ahead of me this year, Easter, the girls birthday, the week of Jessica's death, I am trying to find ways to keep myself busy. Mother's day weekend... that Sunday was a very scary but also joyous day in my life. I delivered two beautiful girls, both alive. I'm lucky to have spent a month with Jessica, and to have Alyssa doing so well and holding a special part of Jessica inside of her for us to always see and remember.

2008 was a difficult year. But as Joseph Campbell said " "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us." I have gone over in my head over and over again, to the point of exhaustion trying to figure out what went wrong, how this all happened, when did problems start, etc. I read over my entire blog last week and remembered that Friday before I delivered...the fluid around Jessica was minimal and dangerous...maybe this is when her brain damage occured, maybe this is when she lost perfusion to her bowels and developped NEC. Trying to find the answers for the 'what if we did something differently' is not possible. I have accepted that I could not have done anything differently to give Jessica the life I wish she had here with us. I have accepted that I did everything to have her with us as long as possible, and ultimately we made the best possible decision for her by letting her go without suffering. I was lucky to meet her, and to hold her and be able to call her my daughter. I miss her everyday. But I also count my blessings everyday. It could have been worse. I could have missed that very special month we had with her that gave us a lifetime of memories. I could have lost them both, which many mothers have saddly experienced.

So as the time approaches, my running outlet has surfaced again. It is now time to start training for a half marathon, with a little over 16 weeks from now. I was thinking of running the Bluenose marathon in Halifax, and probably still will. But Mother's Day is the day I really need to keep busy, so I've signed up for the Fredericton half marathon. Dad is also running this race, not the same reasons obviously, but it will still be nice to have him there. I'll be the one running through the finish line with tears in my eyes. Tears of sadness, and happiness and wishful thinking I guess...but not regret. I'm passed that, or so I think I am today. Do me a favour and kiss your babies, tell them you love them, and be grateful that they are with you today...they truly are amazing.

(Update on Alyssa in a couple of days)