Tuesday, October 28, 2008

Jenn's rant #6

I often wonder if people have any clue on the impact they can make on other peoples lives. My OB, for example, is often discussed with many of my friends and relatives on luncheons because we have all had her for a doctor during one of our pregnancies. She has such a huge impact on all of us. Her opinion is so valuable, and we are always comforted by talking to her. And even when I didn't see her the day after I delivered and was extremely bitter...I completely forgave her the second she did come to see me, even if it was days later. I recently met with her again as a follow up to my 6 week post op appointment to "check in" and make sure I was doing ok. I thought this was really thoughtful of her to suggest. I'm no longer pregnant, she really doesn't have to follow up on me, but she does...and she cares...I wonder if she has any idea on how much I value everything she says? We discussed possible future pregnancies...Not that I plan on being pregnant anytime soon, but I needed to know what would happen if I decided to go down that road again. She told me that I had a lot going against me before, which I already knew...twins, and TTTS....so chances are, I could probably carry a normal singleton baby again. However, there is still the whole issue with my "incompetent cervix". If I did get pregnant, I would be seeing her as soon as I found out, and I have the choice of whether I do a cerclage immediately after the first trimester or play the "wait and see game", which I think most of you know by now, I don't do that game. I felt better after our discussion, a bit hopeful. I'm not sure if I will ever get pregnant again, but I don't want that option to be taken away from me.

I remember almost everything and everyone...sometimes a good quality and other times a bad one to have. I remember the Dr. who was working the shift before I delivered, and how she came to talk to me the next day even though she had nothing to do with my delivery (however she did deliver Emily, which I'm sure she doesn't remember). The Dr. who delivered Jessica and Alyssa was also the Dr who admitted me on bedrest and who performed my first cerclage with Dr. M. She is also my GYN who I see yearly. I realize that Dr's can be extremely busy people, but I was very shocked, and a little angry to be honest, that at a recent appointment this Dr. didn't even know about Jessica passing away. I've always had a good relationship with her, and had a good opinion of her up until this last time with her. Are doctors really that impersonal that they don't follow up on their patients at all??? I saw her 5 times this year, and 3 of those visits were pretty scary times for me, but yet she had no clue. I went into the appointment nervous and feeling a little overwhelmed because this was the first time I saw her since the birth of the twins...but I never thought I would have to tell her that the baby she delivered passed away. And her response?? "oh that's tough".

Some people really have no idea how much of an impact they can make on our lives...So many people who I was close to before this past summer were too chickenshit of what to say to me, so they said nothing, and still say nothing. I still talk about normal things you know. I have way more respect for someone who communicates and says all the wrong things, then someone who takes the easy road and says nothing at all. In saying that, there has also been many more people, friends, family, and some people who I barely knew who have become very close, and made a big effort to not ignore me, and not pretend that nothing happened....some who have even gone out of their way to look up information about losing a twin for me, and for themselves to try and understand. I often forget that it was only US who lost a child, and the rest of the world continued on like normal.

Friday, October 10, 2008

RSV season

Although I know most of you are very good at letting me know when you are sick with colds and flus, I still feel like I need to send out this blog for anyone who may be visiting, or in case we may be visiting you. My friend, Georgina, sent out an email recently, which I pretty much copied, that reminded me to do the same.

As you all know Alyssa was born very prematurely at 25.4 weeks to be exact, and although she is very lucky and relatively healthy in the big picture, she still has a higher risk then most babies of getting infections and becoming extremely sick and even hospitalized with something as simple as the common cold. Being back in the hospital means she would be getting regular blood pressure checks, getting held down to have her heels pricked and squeezed for blood, and possibly having an IV for medication. Which would also mean we would be away from the other half of my family, which really I think we've done long enough this summer.

Not to sound controlling or rude, but if you're even a little bit sick (snuffly nose, cough, feeling run down) or you've been around someone who's sick, we'd prefer it if you waited until you were feeling 100% before coming over to see us. We will all be getting the flu shots, and hope that if you are seeing us on a regular basis that you will too, and Alyssa will be getting a series of shots for RSV this season which is from late fall to early spring. RSV, or respiratory syncytial virus, is a common, easy-to-catch infection that is similar to a cold. Although most babies catch this infection in their first 2 years, they usually have no major symptoms other then a regular cold, same as adults. However, babies who were born prematurely, and have lung damage are more at risk for serious consequences. The medication she will be receiving is not a vaccine, therefore does not prevent her from getting the virus, but it does help reduce the risk of more serious infections. For example, perhaps prevent her from being reintubated. Please read the following link for more information :


If you do come to the house, which we hope you do if you are healthy, please wash your hands right after coming in....we also have a bottle of hand sanitizer as you enter the house. If you sneeze or cough, please wash your hands afterwards and a good rule of thumb is to keep your hands away from your face...so cough into your sleeve, not your hand. We ask that you do not kiss her face and only touch her hands if you've washed yours, as her mouth is the first place her hands usually go. Alyssa's lungs will develop into normal and healthy lungs, hopefully before she turns 5 years old, but until then, or at least for the first two years we have to be extra cautious. Thank you for all of you who have already been extremely cautious by waiting until your colds were over before seeing us. I may be a little bit paranoid, but really I think I have every right to be, don't you??

Thursday, October 9, 2008


I feel a little bit like a jack-in-the box. It's been over a month since my last blog entry and now I feel like I've just popped out of the box and have so much to say. I haven't decided yet if this will be one long blog entry, or a couple different posts, I'm thinking a couple different posts.

The past month and a half home has been wonderful, really. We've had lots of appointments, lots of visitors and only one little scare. We've had 2 follow-up appointments and 3 Dr's appointments. Alyssa now weighs 9 lbs 13oz, she was taken off the fortifier formula, so she is now only drinking breastmilk, and still growing well with it. The fortifier gave her an extra couple of calories for her feeds. Her eyes are doing well, she has been cleared at her last checkup for ROP, which was a huge relief. Therefore will only have to get her eyes checked again at a year. Her most alert time of the day is after supper, and she stays awake until it is time for bed which is usually close to 10-11pm.

All is well, and I fit into 3 pairs of my pants. My second week home I started running again, and it really feels great. Running has always been my time to think, and reflect...if I'm angry I work through it, if I'm sad...the run lifts up my spirits, and if I'm already happy...it makes me even happier. In the spring I'm planning on running another half marathon, but I'm looking for one with purpose. The only ones that have really caught my eye so far, are the Team Hole in the Wall runs which are for seriously ill children to enable them to go to camps free of charge with all the medical help they will need. I love running, but I am not a natural runner. I'm not like my brother Jamie who can decide one day that he is going to go out and run a 10 K without any training. I struggle to get out the door some days, and I don't always feel great during my runs, but almost always feel great at the end. When I run now, I think of Jessica...and I think of all the other babies and parents who've been through what we've been through. The families who lose a child, and the children who survive but are left with no or very little of a quality of life. After every thing we've been through, and from reading what others have been through, I feel like I need to make a difference...whether it's making some donations, talking to other familes, or running a marathon, just something that helps me feel like I am keeping Jessica alive. October 15 is a day to remember.

October 15 is Pregnancy and Infant Loss Rememberance Day recognized throughout the States and just recently in Ontario and New Brunswick, where they have already established some "Walks to remember". The first Walk to Remember was held in 1986 in Chicago, Illinois to walk the steps that our little ones never had the chance to make themselves. In 1988, President Reagan proclaimed:

"National observance of Pregnancy and Infant Loss Awareness Month offers us the opportunity to increase our understanding of the great tragedy involved in the deaths of unborn and newborn babies. It also enables us to consider how, as individuals and communities, we can meet the needs of bereaved parents and family members and work to prevent causes of these problems."

Presently, this day is not recognized in NS as Pregnancy and Infant Loss Remembrance Day, but I'm sure it will be in the future if I have anything to do with it. All over the world, from 7-8 pm candles with be lit to remember Jessica, to remember ALL babies who have died from miscarriage, stillborn, neonatal death, and SIDS. If everyone lights a candle for this hour, there will be a continuous WAVE OF LIGHT over the entire world for this day. I think that is pretty cool. This helps me to feel like it is "ok" to grieve, and it is ok to talk about Jessica, and let people know that I need my family and friends to remember Jessica with me. Keith and I will be going to the IWK that evening in the chapel where other parents grieving for their loss will attend the candle light ceremony. So I invite you all to light a candle for this hour, for Jessica, and/or for friends and families of yours who have suffered loss of a baby in any way.

Well my tears have slowed down in the past month. I hadn't cried in a long time... not until this past Tuesday with my last bereavement session. I've been attending grief work sessions for the past 7 weeks. I am feeling better, but I am not sure if this is because of the sessions, time, or my busy schedule. I feel a little bit like the outsider in my group, because I am the only mother who lost their baby after a month. The others had stillborn babies. Since my pregnancy, I will always fear delivering prematurely, but now I think I will also fear delivering full term to a stillborn. I never realized how common this occurs. Imagine making to 37 weeks of your pregnancy to find out your baby has no heart beat. Although we lost our babies under different circumstances, we still share the fact that we are all grieving for our children. These women have as many "what if"questions as I do...what if they had a c-section a week earlier, a couple days' earlier??? It's scary really. I don't mean to scare anyone, because really, in most situations our babies come out into the world crying and into our arms warm and cuddly, but not more loved then if they were stillborn, or only with us for a month.

On Tuesday, we had our own little candle ceremony remembering our babies, and watching the flame initiated my tears and all my thoughts and dreams that I had for Jessica. It's just like our facilitator told us day 1...our grief is unpredictable and will not likely progress in an orderly fashion. When we least expect it, even if we're feeling completly "normal", something happens that overwhelms us. I won't "get over" it, but am starting to "live with it"