The End and the Beginning

My legs are shaved, my toenails are polished, my laundry is done, my floors are swept...and our lawn is mowed. It is SO great to be home. After two great nights rooming in with Alyssa over Labour day long weekend, we were finally able to go home August 31st after 110 days in the NICU.

From being critically ill and close to death's door, intubated, extubated, reintubated, oscillator and nitric oxide, pneumonia, good days, bad days, more then half of dozen blood transfusions, RDS to BPD, mild ROP, another infection, many apneas, many IV's, poor feeding, many restless nights... and losing a twin sister...were just some of the obstacles Alyssa went through to get her to her discharge day. We waited for the day to take her home for so long, but when it came...it was a very bittersweet moment.

Charlotte and Shelley were both working and able to see us off, and Courtney came all the way in to see us, but missed us by minutes as we were discharged much earlier then we thought. Jessica's picture was sitting with Alyssa in her car seat as Keith and I headed out those swinging NICU doors thinking... this is the moment we've been waiting for since the day we arrived in the NICU in May...so bittersweet...Keith should be carrying one car seat and me the other. Instead we have a pillow with a picture. We've come along way. Although there is still a lot of pain, and guilt, the anger is gone. I'm starting to feel less depressed. And I never realized how depressed I was until I started to feel better, happier.

Our first week home has been great. She's eating, she has long alert periods, and the first couple of nights was sleeping 5-6 hours. That changed quickly, and I'm back to the normal waking up in the middle of the night and staying up for a couple of hours...but really, who cares?? I may be cranky with the lack of sleep sometimes, but I'm home and cranky... and I can wear my comfy pants all day, I can make meals again, I have time to sit and drink my coffee in the morning, I can visit with healthy family and friends, I can talk to people on the phone, I can start my thank you cards once again, I can be me, and laugh and cry whenever I want, without feeling like I am spinning. The spinning has stopped ;)

Yesturday was our first follow-up appointment, and Alyssa gained 180 grams since discharge, which they were happy about. But we will have to continue to monitor her weight closely as she is gaining in the lower end of the "normal". Her eyes were checked again, and her ROP is improving, so hopefully at her next appointment in 3 weeks, her eyes will completly be back to normal. We were so pleasantly surprized to see Charlotte arrive at our appointment. She stayed with us for the entire appointment, we were so happy to have her there. That morning was so great, because then as we were heading up to the NICU, we ran into Sharla who we missed saying goodbye to before we left. Then we ran into one of Alyssa's dietician's, Tara (Jessica's primary), Paula from transitional, and another mom friend of ours who was in follow up with her 2 boys at the same time. It was so nice to see everyone again, and to feel like some of them may have missed us as much as we missed them.

So this is it. This is all I have to say right now. I won't be updating the blog as frequently anymore, maybe once a month, depending on what is happening. I think this blog has definetly served it's purpose to keep all of you updated these past 6 months or so. There has been many more viewers then I ever imagined. Thank you to everyone for thinking of us, for praying for us, and for taking the time to read my blog to understand what we've been through. Thank you to all of our friends, family, and even strangers who continued to call and write me on facebook or personal messages even though I never had the time to talk or write back....You're support helped us to get where we are today.

Visitors are welcome to the house as long as your healthy!!

feels like home

I took my second night off from the hospital tonight and went on a boat cruise with the wonderful nurses I work with at the HI. Last night I went to "what's for supper" in preparation for Alyssa coming home. I may have drank more then I can handle from being off all alcohol for a couple of months since Jessica passed away, which God knows I drank too much during that month. But it was nice to take a night off, and drink....and dance, and laugh...and smile. It's been SO long since I've felt somewhat NORMAL. Thank you Angela, Karen, Chris, Heather, Sheila, Anne, ... and everyone for helping me have a normal night...and more...You have no idea how nice it is to feel "normal."

It's been a long time coming. We really are ready to come home...we deserve to take our baby home. We are ready on so many ways....but yet so unprepared when it comes to saying goodbye to the friends/family we've been close to over the last 3-4 months. We've had wonderful care. The staff at the IWK are better then great, they are fantastic,...from the nurses to the friendly cleaning staff and ward clerks. We've had 3 main primary nurses who I cannot even think of a gift that would thank them enough for the time they've spent into caring for my girls and myself and Keith. Charlotte, Sharla and Courtney...you have made this long journey bearable for us. We could never have made it through without your hugs, your compassion, your sweet talks, and encouragement. YOu've all been there for us from the beginning and so close to the end, and we love you all so much. Charlotte who has been as close to me as my own mother...from the first week the girls were born...from the day Alyssa became critically ill, from the day Jessica passed away...from the second time Alyssa had an infection, to transitional care and hopefully until discharge...you have helped me get through everything more then you will ever know, and I love you like a member of my family....
And to Courtney, sweet Courtney...you've also touched our hearts from the beginning. Your creative talent with making the girls footprints, dressing up the albums, making the Father's day card for Keith from Alyssa...it's all wonderful...I will never live up to your beautiful matching beds, for you have been the most organized and color coordinated photogenic person I have ever met, and I love you dearly for being there for us. YOu will make the most beautiful bride this coming October!
Oh Sharla, although you may be a later bloomer, with only meeting our darling Jessica before surgery, you showed us from the beginning that you had what it took to be an important part of our little circle. You held a special part in our heart since the surgery, which grew much deeper when we realized how sick our little girl was. You stood by us, and told us what we needed to hear. We had to make the most difficult decision in our lives, and you made it seem possible and the only right decision. You helped us get through it all, and we will never forget you for this. I love you so much!!! I'm crying here thinking about not properly saying goodbye to you as we will be gone before you return from Vancouver.

We were so lucky to have these 3 wonderful people share our journey with us. We also had a couple more primary nurses who unfortunately were unable to follow us much after NICU 1. Shelley, who was Jessica's primary, who took Jessica out for her first kangaroo cuddle with me...definetly touched mine, Keith's and Jessica's hearts. Tara who was only primary for a short period of time for Jessica, but who was also very kind to all of us. And finally Rosanne, who we equally loved, but unfortunately was an E nurse therefore unable to spend much time with us in transitional. And Paula, who we met later in transitional, but who allowed me to spill my heart out to...which was a huge step in my "therapy", you will not be forgotten...

So here I am struggling, thinking on how I will say goodbye to all of these people who have touched my heart so much. I am so happy..to think that I can finally have a normal life home, but yet so sad that Jessica's only life was where we will be leaving so soon. The IWK was her home, and I feel like I am leaving her. I love her so much, it's extremely difficult to be so happy and yet so sad in the same minute. She is our angel, and now has a home in heaven, when she should have a home with us. She definetly left too soon...

Our day is coming

The pain is so awful. I'm in excruciating pain. Why isn't the Morphine working? It worked every other time. It stopped the pain and knocked me out so that I could get another 3 hours over with. And why does this nurse keep poking at me for the babies heart rates? I keep telling her that anything touching my belly irritates my uterus, why won't she leave me alone!! The Dr. checked for the heart beats on U/S, they're both there, and she's still searching...Enough already, can't you tell I'm in pain!! ...Finally the morphine is working, the contractions are still there, but less painful, but what am I feeling...yuck, I'm wet...I'm bleeding. Bleeding is not good, it means my stitch needs to come out, which means the babies need to come out. I'm not ready, they are not ready. Dr. H told us 50% survival rate for a singleton at 25 weeks. The nurse checks my pad, yup, it's amniotic fluid, my membranes ruptured...this is it. Leave my belly alone, the nurse is still looking for the heart rate, even after the Dr. said she would set up for a c-section. These girls HAVE to be fine, they NEED to live. I CAN'T lose them. And they're going to be healthy. I can't even imagine losing one of them, I can't even think about it, I don't want to ever think about it...I don't think I could go on...

I remember this day like it was yesturday, but it also feels so far away. I lost one of my babies, and I'm still here, and I'm managing to go on...which sometimes makes me feel guilty. I'm so glad that I met Jessica, and that I had that month with her. I find myself thinking of her more and more as Alyssa becomes closer to discharge. I'm grateful that she was alive when she was born. I'm grateful that she felt how much Keith and I loved her, and I'm grateful that I was able to feel her love in return. I still cry at least once a day, but I hear that it gets easier in time. I met another Mom recently who lost her twin boy. I only met her once, and I admire her, and hope to be as strong as she is one day. I copied and pasted part of her blog entry here, in hope that I can live up to her kind words.

"(To the mama of the girl dressed all in pink)
Today should have been her birthday, three-and-a-half months after she was born.
Someday she’ll be underfoot in your kitchen tugging at your skirt, grinning up at you like a jack-o-lantern and you’ll think to yourself was that really us? I can hardly believe it even though right now, you’re walking around with your skin turned inside-out.
Someday you’ll be able to think of her twin without crying. You’ll breathe deeply and feel her saying to you it’s okay mama, I am watching you and look, look at my sister go and you’ll not see her smiling but you’ll feel it.
I wasn’t convinced of it for myself but I see it in you as plain as day. You are a warrior of a mama, more so than most mamas ever need to be. You feel like you’re spinning but you are not. As everything else spins around you, you stand your ground.
And to me, you are fifty feet tall."
http://www.sweetsalty.com/

I look forward to the day when the spinning stops.
I look forward to the day that Alyssa comes home...this day might be this weekend. Alyssa has done a 360 with her feeding...she is now feeding when she wants...taking less volumes, but still gaining weight. Her NG tube was pulled out 3 days ago, and has not needed to go back in.
Our time is finally coming. Saturday, Keith and I are rooming in with Alyssa at the hospital. If she continues to feed well, with no apneas, she can come home with us this weekend. It all happened so fast. Almost 4 months ago, my friend Jessica and I wished that someone would give us some strong medication to put us in a coma...only to wake up months later when the roller coaster ride was over. We are both finally so close to going home. Jessica is also going home this weekend. It has been a very long journey, and it feels so good knowing that we are close to the end of it. Please pray that the week goes well, and we can take our baby home over the weekend.