Decisions, Decisions

I am coming to realize that over the course of the next several months, P and I will be faced with many difficult decisions. Some of them are less important than others, but the more I learn about T18, the more I realize just how uncertain my little Toot's future is ... there are so many babies out there living with T18. It warms my heart to know that Toot has more of a chance than I originally thought. I talked to a girl whose daughter is 5 years old and going to preschool. Grace has full T18 and is "charting her own course" as her mom said, but to know that there are babies out there who make it literally gives me chills. Maybe Toot will be one of the lucky ones? And even if she isn't, if you don't have hope, what else is there?

We have a fetal echo scheduled next week, which I am so looking forward to because the more information we have, the better. Up to this point, Toot had no major anomalies that are usually associated with T18. The only thing they found on the Level II ultrasound back at 17 weeks was small gestational age and hydronephrosis ... nothing else. Cardiac anomalies tend to be so common in these babies, and as of last check, Toot's heart looked good, though it was too early to tell if she had an ASD or VSD. The echo will give us that information ... we also have an ultrasound that day, which should tell us how everything else looks!

In no particular order, these are things I think about ...

A nursery: When we first found out that Toot had T18, I was somewhat relieved that we didn't have a nursery set up, because I didn't think I could bear the thought of staring at her room all the time. The further along I get though, I wonder if we should have something in place in case she does make it home ... I worry about setting myself up to be disappointed, but I also want no regrets ... depending on how the echo looks, we might paint the room and go from there. And I know that if Toot does get to come home, my family would have a nursery ready in about two minutes! But should we buy a crib and have it in the house just in case? One of P's friends offered us their bassinet, which is so incredibly thoughtful, so we're covered there. When you think about it, the nursery is really for the parents. Babies need love, food and sleep ... we've got the love piece covered, and I think everything else will probably just fall into place.

Induction: This is a tough one ... some of these babies are in utero for 41-42 weeks, but I have no idea if I could actually pick an induction date, because there's a good chance I would be choosing the date my baby dies. It just doesn't feel like something I can do ... I pray every night that God helps makes these decisions for me. He and Toot are in control of this and I hope with all my heart that some decisions make themselves because they're just too painful to consider ...

Delivery: Given the prognosis of T18, I had just assumed that we would opt to not have any fetal monitoring during birth and would deliver vaginally no matter what. This is my first pregnancy, Toot's chances are poor, and surgery scares the crap out of me, so why put myself through it if it won't change the outcome? But, as things move along (and I cannot stress enough that I know how early it is!) my goal is changing: I want to see my baby girl alive ... and from everything I've read, a c-section gives your baby a better chance at life. So do we opt for fetal monitoring to know if she is in distress and therefore have the option for a c-section? Or do we stick with the original plan and hope beyond hope that we get a few minutes with her? (On a side note, a lot of doctors won't even consider C-section as an option, so if it is something we think we might want, we need to make sure we have a doctor who's on board with that).

Hospital: I think this decision has been made. Up until my conversation with Elisa the other day, we had planned on sticking with our OB/GYN and delivering at the community hospital where we planned on delivering all along. Thinking about it now, I have no idea what I was thinking!?! There is a level III NICU adjoined to the hospital where I work and it's about 10 minutes from my house. The doctor that did our amnio (and is doing the echo) trained all the MFM specialists at this hospital and would be able to recommend one for us. Not to mention, we'd be able to meet a neonatologist, see the NICU and hopefully have a few familiar faces when we do in fact deliver. Plus, we'd receive a lot more prenatal monitoring than we would if we stuck with my OB/GYN. We want Toot to have everything available that she could possibly need in the event she does live. Every baby deserves a fighting chance, and Toot is no exception! But that being said, it brings me to my next concern ...

Comfort care: P and I had planned on doing comfort care only because nothing we can do will "fix" our baby girl ... but what about a feeding tube? Or BIPAP if she needs it? How do we make those decisions? Again, this is where I pray and pray that God guides us to make the right choices. I know I don't want my baby on a ventilator, and I just hope that she somehow tells us what is right ...

After: If Toot doesn't make it, what do we want? The more we talk about it, the more we're leaning towards two options. If Toot goes to Heaven early and I deliver her knowing she's with Jesus, we might feel more comfortable with cremation (something I never in a million years would have thought I'd want) and having a memorial service for her. If she survives labor and delivery, we think a funeral might be the best option. P and I have never had to plan a funeral and really don't want to either ... it's early, but I feel like we need to have a few things in place now, because I certainly am not going to want to deal with making "arrangements" with Toot in my arms! If we do have a funeral, what do we bury her in? My sister had the idea of using my wedding dress as either her Christening gown or perhaps to be buried in and I love the idea, but don't know how to go about getting that done ... and the idea of planning both the birth and death of your child is just so wrong ...

There are so many other things to consider, but for now that's what's been weighing on my mind ... for those of you praying for us, please pray with me that God just does what's best for Toot. That is the main thing here ... I do not want her to suffer in any way possible. She is so loved and no matter how short her life may be, I want her to know only love.

Change of Heart

The last few days, I've had a complete change of heart about what I want to have happen with our precious Toot. Last week, I still thought I wanted nature to "take its course". I couldn't actually pray those words, because how in the world could I wish my baby girl dead?! Still, I silently thought about it, all the while praying to God that he help us with whatever happens ... Now that I feel her move, I know that is the last thing that I want. Every extra minute I have with my baby girl makes me want a thousand more ... I pray so hard now that I have even just one minute with her. It's amazing how attached I am to this baby. I love her more than I ever thought possible and want nothing more than to cradle her in my arms ... at this point, no matter what happens, I know that I will be able to do that and it gives me such a sense of peace.

I've been doing a lot of reading on the T18 Foundation website (it took me awhile to go back there again after the overwhelming grief I felt at the beginning of this journey) but there are so many other moms out there that are just like me! It's amazing to know that I am truly not alone ... other people do get it. And it breaks my heart that anyone should have to go through this, but the support that is available is what makes it possible to survive this ...

First Baby

Well, I did it. I saw my first baby (by choice) since finding out that my baby was going to die. My friend A gave birth to her daughter last Saturday, January 17. I met another friend at their house to meet little A and while it was incredibly difficult, it could have been a lot worse ... I just tried to separate my happiness for them from the sadness that I feel. And of course seeing a healthy baby girl reminds me with shocking clarity of what I won't have, but again, I can still be happy for other people ... so, I crossed a "have to but don't really want to" item off the list! And I am glad I did!

Most of my friends are still ignoring the fact that I am pregnant which frustrates me beyond belief, but at the same time, I understand. My husband and I created a blog when we found out we were pregnant so that we could keep our families in the loop, and I wrote about how I could feel Toot move and one of my friends finally asked me if I really could ... it's basically the first time she's even acknowledged that I have a baby inside (other than when we found out Toot was a girl), so I'm hoping that will maybe help things be less awkward ... most of my friends (with the exception of two, thank you Leahys) have yet to even acknowledge that I'm having a girl! It baffles me, but I guess people are just afraid of upsetting me ... I know how negative I sound, and I don't really mean to, but I get sad for my little Toot that people don't want to talk about her!! I came across a quote that I really liked and while we don't have a name picked out just yet, you get the jist:

The mention of my child's name
May bring tears to my eyes,
But it never fails to bring music to my ears.
If you are really my friend,
Let me hear the beautiful music of her name.
It soothes my broken heart, and sings to my soul.

____________________________________________________________________

I talked to a girl today who lost her son to T18 and it was so comforting ... I had been nervous to call her (she works with a family friend) but she emailed me last night and I am so glad that we finally talked. She told me about some great resources and really made me rethink where I deliver my daughter. It is nice to talk to someone who truly understands ... her son died of T18 almost two years ago and she just knew exactly how I'm feeling, what I'm going through etc. I finally went back on the T18 website too (which of course made me cry) but did a little more exploring and know what a great resource it really is.

This journey is far from over, but today I feel a sense of peace. It's hard not to when I feel Toot kicking away like crazy ... I love knowing she is safe inside me and every flutter makes me smile. It's like I have this secret that no one knows about it and I love it. So thanks Toot!

Mixed Emotions ...

It's been awhile since I've posted, but sometimes I feel too drained to even write anything. I can barely wrap my head around how I feel most of the time, let alone express the words in writing ...

Work has actually been a great distraction. I had been hoping it would be, but wasn't sure how I'd feel. The unit I am on is pretty good, and the manager there has been great in accommodating my crazy schedule, so I am very lucky. No one there knows my "situation" either, so that has been kinda nice too. I feel so guilty though (it seems to be my main emotion lately). The first day I was there, one of the girls asked if I had any kids and I said " no". Then she asked if I wanted kids and I said "yes, someday". But I didn't mention my sweet little Toot. It's just so painful sometimes to have to explain things. Yes, I'm pregnant ... BUT. And maybe I don't even need to explain myself, but then it's hard not to because I don't act as excited as I was a month ago ... every time someone says "congratulations" it's like a kick in the gut ...

We went to a wedding this weekend and the dress I wore hid my little belly. I feel so guilty for hiding Toot, but it's just so hard to tell people what's going on. Everyone keeps commenting on strong P and I are, how great of a mom I already am and I want to shout I AM NOT A GOOD MOM! I didn't choose this, I didn't ask to be in this situation. How does that make me strong and brave? I've spent the last few days either ignoring the fact that I am pregnant or trying to hide it. How does that make me a good mom? I don't even feel like a mom yet. Mothers are supposed to protect their children, and I cannot protect Toot from what is going to happen to her ... I feel like a failure. I want to save her and I can't :( When I think about the fact that my child is going to die, it literally feels like my heart is breaking. So sometimes I just don't think about it because otherwise I can't cope. How am I going to do this?? I potentially have 19 more weeks of this. There should be a prize at the end of a long pregnancy. I took for granted that there would be and how wrong I was ... and of course my Toot is a prize and I love her so much, but every time I think about her I hurt. I just want to take my baby home and watch her grow up. And I can't. It's so easy to pretend to myself sometimes that everything is okay because she is safe inside me, but things are anything but okay ... I lay awake at night wondering how on earth I'm going to get through this. There are some moments of the day that I just don't think I can ...

Back to Work

I am heading back to work tomorrow and incredibly nervous about it. I typically work 3 12-hour shifts (I've been on nights since August), but am easing my way back into things and just doing 2 8-hour day shifts this week. I'll hopefully do 4 next week and then rotate back and forth between 4 and 5 shifts/week to make my 36 hours ... it will be very strange working days and even stranger working more than 3 days a week. Plus, I am going to be on another unit, one I've never worked on so my anxiety level is through the roof. My job isn't one where if I feel sick or sad I can leave, I'd be stranding my patients and the other nurses ... so once I'm there, I'm pretty much locked in for the day. 8 hours is like a half day to me though, so my fingers are crossed it goes by quickly and without incident ...

We had another ultrasound on Monday with our precious little Toot. At our 12/19 ultrasound, she was measuring about 5 days behind, but on Monday, she was about 9 days behind and in some areas (belly, long bones) she was even further behind. She looked perfect to us though. It's bittersweet seeing her; I'm still amazed at how much she's grown since our first ultrasound and can't imagine how big she'd look if she was actually measuring 20 weeks! I am still comforted to hear her little heartbeat, but it's just so hard knowing she most likely won't be coming home with us.

We got the results of our full karyotype back, and she does indeed have full T18, which we expected. The good news is that it wasn't translocation T18 (which would affect future children). In some ways, it's a relief to officially know. I think I'd been holding out hope that it would be mosaic and that we'd get more time with her than we were intially led to believe. But, it certainly doesn't seem like that is the case, especially given her growth restriction. Every night I pray for guidance and strength and as much as I want nature to take it's course, I just cannot bring myself to pray that my daughter dies ... it seems so wrong. Yet, I don't know if I can do this for another (potential) 20 weeks. I feel so conflicted.

I haven't really felt her move yet, but there are times that I just know she is there. Other times, it doesn't feel like anything and those seem to be the easiest times to get through. It's almost like I can pretend that none of this is happening, yet I know that it is. I just keep thinking about when she does arrive in this world, however that may be, eventually she is going to die and we are going to have to let her go. How in the world are we going to do that? Even if she is born still or dies in utero and we deliver, I am going to hold her. But at some point, I'll need to let her go and it makes me cry just thinking about it. It shouldn't be this way, yet for us, it is. All the uncertainty surrounding this makes me so anxious and part of me just wants to have it happen now. But like I said, I just cannot bring myself to pray for her to die.

Every day of this is a struggle ... I can't imagine how it's going to feel when she is truly gone.

P.S. Allyson, thank you for your comment. I am so sorry about your son; my heart aches for you. Is there a way I can get in touch with you?

Why No Tears?

I didn't cry yesterday. I have no idea why, but I feel incredibly guilty about it. All day yesterday I realized it, but kept thinking that the day/night was still young and that surely at some point I would break down. It's what I've become very good at ... yet, I didn't. Why didn't I cry? At P's advice, I purposely avoided the T18 website and baby stories, so I suppose that helped, but still, I feel like I should have cried. I walk around feeling empty and numb all day, but at some point always become overwhelmed with grief and lose it. It was strange not to cry. Yet, it didn't feel like a "good" day. We met friends of ours for lunch yesterday afternoon, my first social event since getting this news. It could have been worse, but was somewhat okay. My friend A is due in less than a week, so her apartment was all set up with baby stuff and when we walked into her place, it felt like I got punched in the stomach. But, no one brought up my "situation" and just talked as if things were "normal". P and I didn't stay very long, and I'm glad I did it, but the constant reminder of babies everywhere is really hard. I was at the mall earlier in the week with my sister and every baby stroller just takes my breath away. We won't have that luxury and the knowledge of that is overwhelmingly sad.

It hurts too that most people seem to just ignore the fact that I am pregnant. It's like the huge elephant in the room and is only going to get worse when I start actually looking pregnant. I know that people feel like they don't know what to say, or feel guilty because they have healthy babies, but I wish that didn't prevent them from still acting like my friend ... I am still pregnant. There is still a baby inside me and I am really trying to cherish every moment that I have with this baby ... I need to make all my memories now, because there is a very good chance I won't get many when she is born. But, please, don't ignore me and don't ignore my baby ... I love her so much and I want people to remember her ... because I will never ever forget her.

New Year

It's hard to think of it as a happy new year ... about two weeks ago, 2009 held so much promise and excitement and I was counting down the days until we would meet our sweet child ... now, I just want 2009 to be over so I can know that I somehow managed to survive this. I woke up on the wrong side of the bed this morning too, which I really hope isn't a bad omen for the rest of the year. I tried to fall back asleep and wake up again, but couldn't. My fingers are crossed that it isn't a sign of more bad things to come ...

In high school, one of my teachers had a sign posted that read "You cannot simultaneously prevent and prepare for war." I keep thinking of that quote because we are simultaneously preparing for the birth and death of our child and the two just don't go together. I asked P last night where he thought we'd bury our baby. Where we live now is not the place we'll be forever, so I wouldn't want to do it here, but where else would we do it? I am thinking either near my parents or my grandmother, because we want to head that way in a few years anyway, and at least I know it's a place people will always visit. My mom said no matter where it is, she'll be there to look after our baby :(

I've been extremely paranoid lately that everyone around me is going to die. It sucks. I am petrified for my sister, petrified for P and petrified for my parents. I actually had my parents call me when they got home the other night so I could stop worrying. I am just so afraid that something else is going to go wrong ... I am meeting with a counselor on Monday and am looking forward to it because I know I need to talk to someone. I don't think there is another way to get through this ... I saw this lady about 10 years ago, and she helped me in more ways than I ever thought possible. I continued to see her on and off for several years, most recently about 4 years ago I would say. At one point, she wasn't covered by my insurance, so I paid out of pocket to see her - she is that good. I called her when I found all this out, because she was the only person I could think of to talk to, and she is now covered by my insurance, which felt like a gift from God. It's one less thing to think about ... and at this time, every little bit helps ...