Friday, August 29, 2008

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 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 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'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'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 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...

Tuesday, August 26, 2008

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

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.

Thursday, August 21, 2008

Happy 100th day

Today was a big day, HUGE. 4 big milestones. Today was my due date, 40 weeks. All week I kept thinking about Alyssa being 100 days old on Thursday and being full term, but it wasn't until this morning that I really thought about it and realized that today, or closer to today I should have delivered twins, and yet here I am with only one baby. 1 baby who has fought really hard to get where she is today, and continues to struggle with her feeding. This is the life I was given, and I am still struggling to make some sense of it.

I remember months ago, when we had friends in transitional care who were struggling with feeding issues and appearing very frustrated...and I honestly wasn't feeling sorry for them. Here I was, still in the NICU with my babies who were on ventilators and oscillators and nitric oxide, and we were worried about whether or not they would make it through the day still alive. But now I am where they once were, and I realize that life is not a walk in the park once in transitional care, and now I feel bad that I couldn't empathize with them, because I want someone to empathize with me. Thank goodness for Gerry and Jessica and Joan, my NICU buddies who will forever be my good friends. After weeks of Alyssa latching on perfectly, but having difficulty with the suck/swallow/breathing...she has now forgotten how to latch, but ironically she can now coordinate the suck/swallow/breathing. I am so frustrated with spending over an hour per feed trying to get something that seemed so simple with Emily to happen. My other feeding frustration is that she will not take a bottle from me. She will take a bottle from Keith, from Courtney, and from Paula, however not from me. Meanwhile the neonatologist on for the next couple weeks, I can feel breathing down my neck as he wants to push us out the door. We are just not ready yet.

The title in this blog says "happy" onto the next milestones. Alyssa reached the 7 lb mark today on her 100th day in the NICU. Way to go Alyssa!!! Probably because she is getting most of her feeds by gavage and not having to work for her feed. Ok, enough of my frustrations for one day. Oh, by the way...I ate another cookie today.

And finally, probably the scariest milestone is that her oxygen monitor was discharged this morning. Her caffeine was discharged yesturday, and she had no apneas in 12 hours, so the monitor is gone. SCARY. She does still have her heart rate monitor if she stops breathing, but still, I rely on those numbers!! It was a much quieter day though, with less beeping going on, and trying to pay more attention to my baby rather then all the numbers. So that was our exciting day, 100 days, 40 weeks, 7 lbs, and no oxygen monitor. I feel like this should be a turning point...hopefully tomorrow feeding will go well.

Wednesday, August 20, 2008

Jenn's rant #5

Today I looked at myself in the mirror with disgust, totally grossed out with the way I look and have looked for a long time now. Here I am almost 4 months after giving birth to twins, and tiny twins mind you...and still overweight and not fitting into any of my pre-maturnity clothes. Every morning I go through the same dilemma of what to wear. I sift through all the dirty clothes that are thrown on the floor, the dresser and even in the laundry bin in search of something that will look half decent, and not make me look fatter. With no time to do my own laundry for over a week now (however I do have time to catch up on facebook and read other peoples blogs until 2 am...), I do the smell test. Shirts don't usually pass, but pants and shorts seem to last for a long time. My good old beige maternity shorts with the high elastic waist to cover my protruding belly and a baggy t-shirt or tank-top...although tanks show off my not so flattering arms.

With Emily, the weight seemed to come off much easier. We did lots of walking, the nursing may have helped, I fit into my clothes quickly, even though I still carried a lot of baby weight. I ran a lot which was probably the biggest help. Different story this time. Although you'd think the stress of all of this would make me a mini-me, the Ronald McDonald room and all of its baked goodies have tempted me to much. Every day there are 3 volunteer shifts. And each shift the volunteers bake something delicious...usually the traditional chocolate chip cookies are a favorite, and then there are muffins, other cookies, rolls, name it. Walking into a room with such a delicious smell makes it very difficult to not at least try one....of everything. I've never had great willpower, which is why I don't keep sweets or chips in the house. If it's there I eat it. So my best option is to just stay away from the room, however, this is where I usually eat my lunch unfortunately. Which is another problem. Up until yesturday, I bought my lunch almost every day I was here, although I tried to be healthy, it doesn't always work that way....especially since most days I am so rushed in the morning that I forget to feed myself breakfast, so by lunch, I am starved.

As I see all the "skinny" women walk past me, I want to vomit as I have been here the longest and could still pass as a pregnant woman. Monday, I made a batch of the old faithful...taco soup in hopes that by eating this, I will a) save some money, and b) eat healthy and lose some weight. This week I went 3 full days without eating any cookies, and to no surprize lost over 7 lbs from the "no cookie diet". Friday's is my cookie pass day...but only 2.
Well it was until 1 hour ago, when I could smell fresh blueberry muffins in the oven. So I cheated again, and tomorrow will go through the same feelings of disgust as I look at myself in the mirror again....and sift through all of my dirty laundry in hope that my beige shorts that I wore all week will still smell pretty.

There is some positive to being overweight though. When the weight eventually comes off, people usually notice and give you nice compliments. And for me, I'm kind of a yo-yo. In one year I could gain and lose 5 times, so although everyone just stays quiet during the gaining period and talk among themselves "have you seen Jen lately, she's gained a lot of weight"....that means 5 times of compliments when I lose weight....ha! So there you skinny girls...all you can do is change your hair style or something to change your look...

The time factor is always the problem. I love running, and if I had the time i would run every day, every morning. but when you are up till 1-2 am most nights (come on I need some down time too)...early morning runs don't seem so fun.
Well now that I've ranted to God knows how many people, maybe now I will do something about it...and next time you see me, just maybe I'll be wearing something other then my beige maternity shorts, or maybe not.

Friday, August 15, 2008

Saying goodbye to NICU buddies

Saturday we said farewell and good luck to another family (Audrey-Jo) as they went home with their twin boys. We are very happy that they finally get to go home after 75 days or so, but also frustrated that we see so many people coming in and going home, while we remain stationary. A couple of weeks ago, my friend Robyn, who was Alyssa's neighbor in transitional care for a couple weeks also was lucky enough to go home. Since we've been in NICU 3 we've seen at least 12 families go home, and I can't even count the amount of babies that came and left so quickly in NICU 1 while we were there. Our day will come too. So in the meantime we just have to be happy for our friends that also had long, or short journeys in the NICU, and who have babies who are well enough to go home. I wish them all the best, and I really am happy for all of them, even if sometimes I seem a little bitter.

Since Alyssa's caffeine returned, she has been doing very well, with NO major apnea's. However the feeding has been really crappy up until yesturday. Most days when I'm in the car on my way to the hospital (usually the evening trip) I have a million things in my head that I'm going to write about, but last week were all depressing thoughts, so I thought I'd wait till we had a good day.

I was getting so frustrated last week. Alyssa had taken a full bottle August 11th like I mentioned before, but that was the best feed in what felt like forever. We were lucky if I could get one or two good feeds a day, and good means that she took at least 10 ml of milk by the bottle (56 mL is her full feed), or that she even seemed interested in breastfeeding. Everyday it was the same thing, I'd try, and usually have very little success, most the time she wouldn't even wake up for her feeds. She could sleep all day right through feeding time it seemed. I was getting worried. Her stools were very watery, her heart rate was very low, always sleepy even after trying everything to stimulate her, no big interest to eat...just very lethargic. I just felt like we hit a plateau. Meanwhile, every other baby in here is crying every 3-4 hours to eat like babies should be doing. I really am happy to hear about babies doing well, I hate to hear of a baby getting sick or having difficulties, whether it is my baby, or my friends baby. I just want MY baby to be doing well TOO.

I had some good "pep talks" with a couple of my primary nurse's last week and with one of the neonatologist fellows. Everything they say, I know is true. Alyssa is doing very well considering how sick she was. With her lungs being as damaged as they are, and to be on no oxygen, and for quite some time now, and also no diuretic for fluid is quite impressive. She was so sick for so long, and was so premature, that she just needs time. She can have all the time in the world, every day I see her, I am amazed at how far she has come. She is getting so close to reaching 7 lbs, probably even before the end of the week. That is a normal weight for a baby, who would have ever thought that this 1lb 14 oz little girl would be so big 3 1/2 months later. And when she is awake, she always seems so happy. I can't even tell you how much I love this little girl. Alyssa and Emily make me smile everytime I see them.

Yesturday, we had another "new to us" nurse. We've seen her in transitional care but yesturday was the first day we had her, and it was such a great day. Alyssa actually woke up for all of her feeds during the day, not crying, but looking around. She took TWO full bottles AND breasfed for at least half of a feed all in one day. I was super impressed. She also had her eyes checked, and she did fantastic for the examination with no desats, and didn't even need a soother to keep her calm. She still has Stage 1 ROP in her eyes, a little more then the last examination, but nothing to be concerned about. She also had a bath yesturday, so a very exhausting day for her overall. Hopefully yesturday was not just a fluke and then she continues to progress...back to the hospital I go.

Tuesday, August 12, 2008

Alyssa's caffeine addiction

And the NICU ride continues...By moving to transitional care, I think we just expect that things will go smoothly and Alyssa will continue to progress until she is well enough to go home. But I have to keep remembering what the nurses and other Mom's told me week 1. The course of 25 weeker's is like a roller coaster ride, with your up days and down days...and things can change so quickly. Well, let me tell you, I've always hated roller coasters, I am not a thrill seeker and I try to avoid scary rides the best I can. Needless to experience here makes me HATE roller coasters even more.

I really shouldn't complain because considering how much we've been through, and how far Alyssa has the overall scheme of things, she had a pretty good week...however I am going to complain somewhere in this blog anyways.

Alyssa continues to grow really well, she now weighs 6lbs 2oz, she's tripled her birth weight. She really is a miracle, when I think back at her birth weight of 1lb 14oz, and Jessica was too for holding on as long as she did. Most nights Alyssa gains 50 grams on average. This week we started trying to nipple feed her more (remember this is the bottle). And she did so well, I was so happy when I heard that she took 46 ml from Keith without ANY major heart rate or Spo2 drops...and August 11th she took her first FULL bottle with Courtney!!! So exciting!! She continues to nurse 1-2 times a day, and doing fairly well, but I never feel comfortable that she's received a full feed so she is always "topped up" by gavage. This was the "up part" of the week.

Because Alyssa's apnea's have all been related to her feedings the past couple weeks, the decision to stop her caffeine was made last Friday as she really had already outgrown her dose with her increase in weight. The weekend she was not herself, she was having many drops in her Spo2 while sleeping in her cot for no real reason. She would drop as low as the 30's and take a long time to recover, when before if she did drop in the 70's she would recover rather quickly. It still is scary when she stops breathing and her heart rate drops with feeding, but I'm starting to get used to stimulating her so that she starts breathing again. But when she does this for no reason...there is no getting used to this. Yesturday was a really bad day. Many times during the day, she stopped breathing. At one time, she dropped 3 times within 10 mins, where she required blow by oxygen in her face to recover, as she was lingering way to low for too long. Her color was awful, she was pale, and at times looking very blueish, and SO limp. She felt like she had no tone at all when I was trying to stimulate her.

I've just really had enough of all of this. Are we ever going to go home, and will she be ok when we do go home?? These are the big questions that I wonder everyday. I am being silly. I know we will eventually go home, and that we will have to be very careful with Alyssa with getting any illnesses, it really just sucks. Alyssa's nurse yesturday was thinking enough was enough as well, so she had some bloodwork done, which surprizingly turned back normal, no infection which is wonderful, and her hemoglobin was 101, which isn't stellar, but not bad either, actually better then her last results. So they decided to put her back on the caffeine...good old Timmy's, I can't live without my caffeine either, how can I expect her too.
Cross our fingers...but since she's been back on her cafe latte, she's been perfect. She was her old self last night. She was awake and happy and feeding well, with no major dips in her oxygen or heart rate. She looked at me with the cutest little eyes as if to say "Mommy, what is all the worrying about, I am just fine". Well thank you for reassuring me Alyssa, I slept well last night. Hopefully she will eventually outgrow the caffeine, and everything will be ok. But yesturday it was not ok...I pray that this ride will now go up and stay there, or just stop already so we can go home.