A Pair of Shoes

A Pair of Shoes
Author Unknown

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.

Each day I wear them, and wish I had another pair.
Some days my shoes hurt so bad I do not think I can take another step.
Yet, I continue to wear them.

I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.

To truly understand these shoes, you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.

Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.

No woman deserves to wear these shoes.
Yet, because of these shoes, I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.

I will forever walk in the shoes of a woman who has lost her child.

To say I hate my shoes is an understatement. At times, it is almost unbearable to wear them. Other times, I feel numb to them. Today marks three months since Brienna was born. I miss her and ache for her. I am sad today. I worry that people think I should be moving on, shouldn't be as sad anymore. But I can't help it ... I am sad and wish my baby was here with me. All day today, I've been getting texts from my family and friends, telling me that they are thinking about me. They make me feel better, and I am lucky to have them in my life. Knowing that other people love and hurt for Brienna comforts me ... it helps validates my feelings in a way. Nothing can take the pain away, but it helps take the loneliness away, and I am thankful for that. Tomorrow is a new day, one that will hopefully be brighter. But today, I am sad.

I love you and miss you Brienna Marie ...

Breaking the (blog) Silence

It's been so long since I've posted, but I need to ask for your help. Please, please, please pray for little Brianna and her parents and sister. Brianna has full Trisomy 18, and is battling for her life right now. Her smile makes you melt and she just exudes happiness. Her mom Brenda is a.maz.ing and such a wonderful person. This little girl gave me such hope and inspiration while I was pregnant with Brienna and I wish there was more I could do for them ... my heart aches to think of what they are going through ... so please, help me pray for Brianna and her family.

The Ugly Truth

The ugly truth is something no one wants to seem to hear. Really, I can't blame them.

Grief is unpredictable. It has it's own rhythm and most definitely marches to the beat of it's own drum.

It has been eight weeks today, eight weeks. Where have they gone? I have no idea ... the ache has not lessened. If it's possible, it hurts worse ... there is a constant sense that someone is missing. A piece of me is just gone forever, and learning to live with that is beyond painful. I long for my baby and I physically hurt that she is not here ...

I am the elephant in the room. I thought it was bad before Brienna was born, but now, it is ten times worse. No one knows what to say or how to act. Again, I can't blame them. I myself struggle with how to act. If I act happy, will people assume that I'm healed? Because that is what I do. I act as if everything is "okay" when it most certainly is not. Not a day has gone by that I don't break down in tears. Not one day. And I fear the day that I don't cry. Because if I'm not crying, then things are changing. Every moment away from June 2 feels like a betrayal of sorts.

On Friday, I sat in the parking lot of my favorite coffee shop, having an internal debate with myself about whether or not to go in. The last time I was there, I was pregnant. And the girl who made my chai always commented on Toot. I sat there for a good ten minutes because I have no idea how to tell strangers what happened. In the end, I decided to go for it. And it was a different girl; bullet dodged. But those scenarios are everywhere. The place I got my nails done, the hairdresser, the grocery store ... I am constantly worried about what to say, or how to explain what happened. I worry about meeting new people and being asked if I have children. I worry that I'll say no, because it is easier than saying that my daughter died.

It seems like everyone keeps waiting for me to move on, or to heal. I don't think you ever move on. I think it's about learning to integrate the grief into your life. Just because I smile or laugh, doesn't mean that I don't ache inside. Brienna is always on my mind and in my heart. I have a new "normal" and am trying to adjust as best I can. But incorporating grief into every day life is difficult ... like I said, it's unpredictable and has it's own rhythm - it's the dance partner that nobody wants, and I'm stuck with it forever. Yet the fact remains that I would do it all over again, even knowing the outcome. Just to hold my sweet baby girl and kiss her and marvel at her perfection. It truly is better to have loved and lost, than to never have loved at all ...

Remembering

Go ahead and mention my child,

The one that died, you know.

Don't worry about hurting me further.

The depth of my pain doesn't show.

Don't worry about making me cry.

I'm already crying inside.

Help me to heal by releasing the tears that I try to hide.

I'm hurt when you just keep silent,

Pretending she didn't exist.

I'd rather you mention my child,

Knowing that she has been missed.

You asked me how I was doing.

I say "pretty good" or "fine".

But healing is something ongoing

I feel it will take a lifetime.

~ Elizabeth Dent ~

I love you Brienna, always. And I miss you more than words can ever say ...

Long Time, No Post

It's been awhile. I have to admit that it is draining to write all my thoughts and feelings. Yet I want them all recorded because my biggest fear is that I'll forget. I'm tweaking some of the posts that I wrote and never posted (I can't share everything) and will post them soon ...

I love you and miss you Brienna Marie ...

One Month

I cannot believe that it has been one month since Brienna was born. One month since I last held her in my arms, one month since I smelled her sweet smell, one month since I wiped her little bottom, one month since I changed her clothes, one month since I caressed her soft skin, one month since I rocked her, one month since I kissed her most perfect button nose ... I have no idea where this month went. The ache is no less now than it was a month ago. I would give anything to turn the clock back to one month ago. To still have Brienna safe inside me. All the heartache and pain I thought I experienced while pregnant pales in comparison to the grief I feel now ... I just miss my daughter :(

I love you sweet Brienna ...

On My Mind ...

In no particular order, these are the things that I think about and are on my mind ...

• I am petrified I am going to forget.
• It is exhausting and incredibly draining to pretend to be "okay" for other people.
  
• I love the little reminders on my body that I did indeed have a baby.
• Brienna's name is Celtic and means "strong, she ascends" ... I love her name.
  
• I have a bruise on my right hand from a blown IV. As it fades, I get sadder and sadder because when I see it now, I think of Brienna.
• I secretly like the pain associated with my tear because it reminds of my sweet baby girl.
  
• I wore a normal, pre-pregnancy bra on Thursday and it made me ridiculously sad.
• I despise looking in the mirror because it's a reminder that I no longer have Brienna in my belly.
• I hate my jelly belly.
  
• The shirt I was wearing when I held Brienna is in my room, folded up with the camisole I wore during delivery. I doubt I will ever wash either of them.
• I saw my one pair of maternity jeans today when I was cleaning my room and almost cried.
  
• When I showered the day after Brienna was born, I felt like I was washing her away and I cried the entire time.
• Every time I visit her at the cemetery, I want to throw myself on the ground and stay with her. P has prevented me from doing this.
  
• Sometimes, breathing hurts.
• Time seems to stand still. The only time it moves is when I'm sleeping.
  
• Everything seems so surreal that at times I wonder if I did indeed have a baby ...
• I found a poem online yesterday that brings me to tears every time I read it. I changed the his to a her ... the author is unknown:

Tiny Angel rest your wings
Sit with me for awhile.
How I long to hold your hand,
And see your tender smile.
Tiny Angel, look at me,
I want this image clear ...
That I will forget your precious face
Is my biggest fear.
Tiny Angel can you tell me
Why you have gone away?
You weren't here for very long ...
Why is it you couldn't stay?
Tiny Angel shook her head,
"These things I do not know ...
But I do know that you love me,
And that I love you so".

• I constantly wonder if Brienna knew she was dying when she was inside me and if she was scared.
• I feel like a failure because I couldn't protect my daughter. The counselor I see says that maybe she died to protect us from seeing her have to suffer. A little baby shouldn't have to protect her parents ...
• I know she is in God's hands and with our loved ones that have already died, but I hate that she is alone in Heaven. I wish I could be with her ...
• I have less fear of dying someday because I know it will mean that I get to see my daughter again.
  
• I hope beyond hope that Brienna knew we loved her.
• I fear we didn't make enough memories with her while I was pregnant.
  
• My husband goes back to work tomorrow and I am dreading him not being home.
  
• I cannot believe it has been 12 days since my baby was born ... and died.
• Natalie Cole's "I Miss You Like Crazy" is constantly stuck in my head.
• I hate the word stillborn.
  
• Because Brienna died at birth, I fear people will think she didn't exist. She so existed.
• I have no idea how to do this ...
  

Meeting Brienna

I thought it might be therapeutic to talk about the day Brienna was actually born ... so here goes.

As I mentioned before, we went in Monday night to get the gel to ripen my cervix. I was apparently about 3cm dilated that night; they gave me the gel and sent me on my merry way. I was told they would monitor Toot's heartbeat for 90 minutes and was all hooked up and prepared to wait, but I guess they talked to my doctor who said I could just go home. That kinda made me sad, because I knew if she didn't have T18, they would most certainly have monitored her. Their focus just wasn't on her, which was hard to accept ...

I was told to wait for a phone call Tuesday morning and sure enough, at 6:30, the phone rang and they told me to come in at 7:30. P and I certainly didn't sleep well Monday night, so were wide awake when the call came in. I think I was just filled with nervous energy ... we were late (as usual) and didn't get to take any pictures, as I had wanted to. There is one of me in the car, but none of us as a family, in our house before going in ...

After checking in, we were shown right to our room. They gave us the biggest, nicest labor and delivery suite they had, which we were very grateful for. It had lots of windows, and plenty of space for visitors. It was more homey than the one we were shown on our tour of the hospital, and I felt very comfortable there. My day nurse, Cathy, was great. We immediately knew we were in good hands, which was very comforting. Cathy was very honest with us and told us that oftentimes Pitocin can take days to work and that if things didn't progress by 6ish, they would turn the Pitocin off, let me rest and eat and start again in the morning. Cathy had me change into a beautiful hospital johnny and things got started ...

The Pitocin went on about 9AM. I was hooked up to the monitor, and was already having contractions, but couldn't feel them. We listened to Toot's heartbeat for awhile and I so wish we had recorded it at that point. In our birth plan, we had opted to not continuously monitor her heartbeat. We knew that there was a chance labor would cause her distress, and I knew if we saw she was in distress, I'd ask for an emergency C-section, something we had talked about at length and were going to try to avoid. We had planned on listening sporadically throughout the day, but I think I just got nervous and we never did again. I regret that. I started feeling the contractions, but none were painful, so they kept increasing the Pitocin. At noontime, I was still not having any pain, and fully planned on being there for days ...

At about 3:00, I really started to feel the contractions. They were much more painful than they had been. I started to get really nauseous with them too, and got sick several times. Then at 4:00, my water broke. Because of the polyhydramnios, it was this huge gush of fluid. I had just finished getting sick, so was standing at the door of the bathroom and it just went everywhere. I immediately burst into tears because it was then that I knew Toot was really going to arrive. Up until that point, I kept convincing myself that we had time. I look back at the pictures from that morning: me in my ugly gown, but I'm smiling in every one; still full of hope ...

My water broke about 4 more times after that - there was A LOT of fluid. The nurse was even amazed ... P helped me clean up and we kinda just looked at each other with this helpless feeling ... it was truly out of our control. At about 5:15-5:30, I opted for the epidural. I was 6cm at that point and as soon as the epidural was done, I was 10cm dilated and ready to push. At this point it was a little after 6:00, but because things had progressed so quickly, our families weren't at the hospital yet. The doctor came in and said that we could wait a little bit to push, until our families arrived so we decided to wait until about 6:30.

6:30 came and went, because it was change of shift for the doctors. Then at 7:00 it was change of shift for the nurses. So we really didn't start pushing until just before 8:00. I was completely comfortable because of the epidural, but very antsy. My night nurse Joanne was even better than my day nurse. They could not have been more different in terms of personalities, but both were perfect ... I pushed for about 15 minutes and Joanne called the doctor in because it looked like Toot was ready to make her entrance ... the doctor took forever to come and had to be paged again. Our baby nurse, Sue came in at that point and she too was amazing. The NICU nurse practitioner was on standby just outside the room, which we had requested and then it was time. The doctor came in and the pushing resumed ... they were all whispering at one point and I got very nervous. But I asked my nurse, and they weren't talking about Toot.

At 8:50 PM, Brienna Marie was born. I could have sworn that I saw her little arm moving when she came out ... P cut the umbilical cord and Sue and the NICU NP took her for a quick exam ... I will never, ever forget them saying that she didn't have a heartbeat. P said I made the saddest sound he's ever heard ... and then we both just started crying. They brought Brienna to us right away and I held her and just cried and cried. P and I just hugged her and each other and were so sad ...

I ended up tearing very badly. It turns out that that is what the doctors had been whispering about. They asked to do an episiotomy, and I felt like the only option was to do one ... so they did. Despite that, I ended up with a "nasty" 3rd degree tear that required "extensive repair" - it took them over 90 minutes to sew me up - and I now have a "designer vagina" - which apparently people pay big bucks for - who knew?

While they were sewing me up, P was with Brienna the entire time. He bathed her and rocked her and it simultaneously broke and melted my heart to see them together. I will write more about him in a separate post - he totally blew me away and I am more in love with him now than ever before ...

The NILMDTS photographer was in the room as soon as Brienna was born. Sharon sat with me and talked to me and it was so comforting because she was in my shoes a few years ago. The chaplain, Caroline, was also there (we had met her earlier in the day and loved her. When it neared time for Toot's arrival, the nurse paged her and though she was over an hour away, she came back to the hospital to be with us).

Things were somewhat delayed because of them sewing me up, but P would bring Brienna to me and I would hold her for a bit and then he would walk with her around the room and just rock her. Sharon was able to take lots of pictures of her and I got to watch my little girl with her daddy ...

When they were finally done sewing me up, Caroline and Joanne went to get our families. They of course were devastated and I was nervous about everyone being there, but it ended up being really nice. Caroline baptized Brienna for us, and having our parents and sisters there for that was touching. It was the most beautiful baptism, and I am so thankful that Caroline came back for us ...

Once everyone was gone, P just crawled into bed with me and the three of us laid there cuddling. We changed Brienna's diaper, dressed her in one of her adorable little outfits and just held her. The nurses were great and totally respected our privacy, yet periodically checked in on us. Being with Brienna was truly amazing. She's the most beautiful baby I had ever seen. She had this perfect little button nose and the softest skin I've ever touched. She had tiny little freckles on her forehead and the cutest little lips I'd ever seen. She smelled so sweet and innocent and it just took my breath away that we had created this little miracle ...

We eventually called the funeral home and they came to pick Brienna up at about 2AM. Saying goodbye was nearly impossible. How do you fit a lifetime's worth of hugs and kisses and cuddling into 5 hours with your baby?? You can't. As much as we tried to prepare ourselves for that moment, you just cannot prepare to say goodbye to your child ... we handed her to Sue (who was amazing and treated Brienna like her own baby) who walked with Steve out to the car. And she was gone. I can't even get into my emotions yet because it's just too painful.

At about 3AM, we were moved to a new room. We had requested ahead of time not to be on a postpartum floor, and were instead sent to a surgical floor, which suited us just fine. I would gladly have left the hospital altogether, but because of my tearing, they wanted to keep me overnight. P climbed into bed with me in the new room and we just held each other and cried. I don't think I slept much at all. The doctors did rounds at 7ish and said I could go in the afternoon once the Foley came out and I had peed. The Foley came out and P and I just laid there a little longer ... we were both exhausted after not sleeping Monday night either.

I finally got out of bed around 9 and was walking around the room because walking was more comfortable than sitting. Caroline came to visit and was amazed that I was up and about because she "saw my tear and OUCH". That she came meant so much to me. Melissa, the social worker we had worked with at the MFM clinic, also came to visit. Everyone was so compassionate, and it really meant the world to P and I.

We were able to go home just after 12, and I was glad to leave, but so sad at the same time. We were leaving without our baby ... I told P that deep in my heart of hearts I didn't think we'd get to bring her home. He said he had felt the same way ... but we both thought she'd be born alive. It just wasn't an option any other way ... and despite the fact that so many T18 babies are born still, I blame myself. I just wish we had pushed right away. I have no idea if it would have made a difference, but what if it would have?

I have so many more thoughts and feelings, but like I said, I just can't go there quite yet. Every day is a struggle to get through ... I feel so lost, and this overwhelming sense of "now what?" It sucks. And I just miss my baby girl so much ... I would do anything to have her back. If I could turn back the clock, I would. In a heartbeat.

No words

Our precious angel was born into Heaven on June 2, 2009 at 8:50 PM. The happiest and saddest day of my life ... our little girl, Brienna Marie was perfect. She was the most beautiful baby I have ever seen in my entire life. She had the softest skin and the most perfect button nose ... I can still feel her in my arms, smell her sweet smell and I long for just one more moment with her. One more chance to kiss her cheek, touch her lips and tell her that I love her with all my heart ... P and I are so sad she is gone. It feels surreal and I feel hollow ... like I am missing a piece of me.
I miss her so much :(

Prayers Answered

I was dreading going into the hospital tonight. Absolutely dreading it. I didn't want to have to be there overnight, only to potentially not even progress far enough to be moved to labor and delivery tomorrow morning. I hate being out of my comfort zone and I hated that I wouldn't be able to be in my own bed with P and Toot ... I got a phone call today from one of the nurses at the MFM clinic saying that they were "busting at the seams" and would I be willing to come in, get the Cervidil tonight, but go home and wait until they call me in the morning when they have a room available. I felt like a weight had been lifted. I am more than okay with that! And so is P ... we were in the car together when we got the news and he said, oh good, I was having a hard time thinking about how to kidnap you :) One more night at home feels like a gift ... and it gives Toot just a little more time to come on her terms ...

I am not sure I ever posted about my NILMDTS photographer, but I have a saved post somewhere and will eventually. She did maternity pictures for us and we loved her. We got our pictures and they were amazing. This was about 5 weeks ago and I've emailed her several times but heard nothing and couldn't figure out what happened, or if we did something or if she just wasn't interested anymore. I called her today in one last attempt to let her know we were being induced tomorrow. I didn't hear back from her and was really sad. As P and I walked in the door from the hospital, the phone was ringing. It was her! And she was so apologetic about not getting back to me but said she is available tomorrow, Wednesday and Thursday and will wait for our call because she would love to photograph Toot when she arrives. I am elated. I had so wanted her to be there and now she will. It's one less thing to worry about, and it feels like things are falling into place. That can only be the work of God, and I am so appreciative.

As for the hospital, it was totally fine. My nurse for the short time I was there was so nice and as she was about to leave the room, she stopped and came back over me and said, I just want you to know that I read your birth plan, and congratulations on your amazing baby. She started to cry, then apologized for crying and of course I started crying and told her it was okay, but it's just so comforting to be in good hands. The MD who inserted the Cervidil told me that they have a "special nurse" lined up for me tomorrow, so it seems like we'll be in good hands then too.

So thank you prayer warriors ... from the bottom of my heart, thank you!

Hi Toot,

My little June bug! I never thought I'd end up with a June baby, yet here it is, June 1! Where did the time go?!

So my sweet Toot ... today is the day the doctors are going to start the process of inducing labor. I had so hoped you'd decide on your own that you were ready to come out, but that's okay ... it just proves you're our baby - stubborn like your mom and late like your dad :) Just know that if I could, I would keep you with me forever. I feel like I am kicking you out of your cozy, safe home, and I'm sorry for that. I would love to keep you with me, but the doctors aren't giving me much of a choice ... my brain knows that they are probably right, but my heart feels heavy ...

I feel like there is so much to say to you today, yet I don't know where to begin. You've been kicking like crazy all weekend and it never fails to make me smile! You've been such a joy to me and your dad these last forty weeks Toot. We love you so much. You are truly an inspiration and not just to me. To everyone that knows about you. Your dad and I feel so lucky to have been chosen as your parents. You have been such a gift and I can only hope that we get a little more time with you ... we are so excited to finally meet you!!

I have to thank you Toot. You have truly given me the strength to muddle through this journey. You give me purpose in life, you make me get out of bed every day and you have truly made me a different (and I hope better) person. I cannot thank you enough for all you have done. You've changed me and I love you for it.

If I'm being truly honest, I fear myself without you. I fear the emptiness of knowing you're not in my belly anymore. I fear that without you, I won't know who I am or what my purpose is. I fear that if we have to say goodbye, it will break me. I fear that you won't know how much I love you, or that I would have done anything to take this away for you ... and I'm sorry for all the tears today sweet girl. Please don't think I'm sad to meet you, trust me, I have been waiting for this day my whole life. You're my daughter! And I long to hear your sweet little cry and I long to hold you and rock you and show you just how much you are loved ... so the tears are tears of love, tears of fear and tears of uncertainty. And I cannot seem to stop them!

I love you Toot. It doesn't seem adequate enough, but I do. And if I have to fit an entire lifetime's worth of love into just a few moments, so be it. But know that I truly love you with all my heart. That carrying you has been the most wonderful gift and that a piece of you will forever be with me. Always.

I love you.

Love always,
Mom

P.S. Rabbits Rabbits! Binkie says that on the first of every month, and it's supposed to bring good luck, so it's tradition in our family to say it to everyone on the first of the month, every month ... so Rabbits Rabbits my sweet girl!!

Due Date #2

May 28 ... our second due date. I am somewhat baffled that we are here. I thought ten days was an eternity but it flew by. Time is both moving much too quickly and standing still. It is hard. Harder than I thought it would be. I want Toot to come on her own terms, which would mean this weekend. Yet at the same time, I wish I could stop the clock and just keep her inside me forever. It is comforting to me that she is cozy enough to want to stay. It makes me tear up just thinking about her having to leave her little cocoon ... she is alive and safe now! Leaving puts her in too much jeopardy and I just want to keep her safe. Isn't that all any mother wants? I want her with me forever and I know that is not possible, but it's breaking my heart to think of what may come to be in a few days ... I'm trying so hard to stay positive, and am actually having an okay day, but I am just not ready for this. I love my little girl so much, it physically hurts. I wish I could put into words how much I love her and how much I don't want to ever say goodbye. But I can't. So rather than dwell on what I cannot control, I have to think positive. I have to hope with every fiber of my being that she comes out alive. I have to pray that we get a little extra time with her. And I have to remember that no matter what, I've had the most amazing forty weeks of my life. I didn't know it at the time, but this little girl is the most wonderful gift I've ever been given ...

Time ...

It is getting harder and harder for me to wrap my head around the fact that in one week (or less), I will be giving birth. We had our last prenatal appointment today and if Toot doesn't arrive this week, we'll be induced Tuesday, June 2. We go in Monday night at 7PM, where they'll try and ripen my cervix with Cervidil ... if it works enough, we'll go to labor and delivery at some point Tuesday. WHOA. I still so want Toot to come on her own, but I am only 1 cm dialted and not really having any contractions. I thought maybe this weekend I was, but nothing consistent and nothing painful enough to stop me in my tracks, which everyone tells me will happen. The doctor tried to strip my membranes (gross, I know) but I wasn't dilated enough so she didn't get very far ... I'm hoping that maybe it will still be enough to get things going ...

While on the one hand I want Toot to come before June 2, it is so strange to think that our time with this precious little being is so limited ... I feel selfish because I've already been given so much more than I deserve ... but the problem with time is that the more I have with her, the more I want. I want to hear her cry, I want to hear her heartbeat on the outside of my belly, I want to see her chest rise and fall with every breath she takes. I want to look into her eyes, I want to feed her, change her poopy diaper and dress her in the adorable clothes she has waiting upstairs for her ... I want to love her and cuddle her and touch her chubby little cheeks and bare bottom ... I want to be utterly exhausted and sleep deprived from 2AM feedings ... I want to be a harried, disheveled first time mom trying to get it together and it doesn't feel like that is much to ask, but with T18, it very well might be ...

Induction Day

We had an appointment this week and my doctor brought up the dreaded topic of induction. I've always maintained that I want Toot to come on her terms, and my doctor has said I wouldn't be able to go past forty weeks (they use May 28 as my due date, when I'm 99.9% positive it's really May 18). Anyway, she brought it up and I politely asked if we could just talk about it next week. She didn't think that was such a good idea but said that even though I'm forty weeks on May 28, she'll let me go the weekend and if Toot doesn't arrive on her own, June 1 will be the day. I actually felt such a sense of relief because P and I didn't have to make the decision ... we're not left with any choice, and I can feel comfortable knowing that we gave Toot the best chance we could to come on her terms. I had thought the conversation would leave me feeling horrible and sad, but getting to wait until June 1 was our best case scenario ... I can't believe that in less than two weeks we'll meet our little girl!! I still hope she comes on her terms, but if not, that's okay too. At this point, we're keeping the June 1 date to ourselves (Kris and Sarah - please don't say anything to anyone!!) because I'm feeling more and more private about Toot with each passing day and just want to enjoy the remainder of my pregnancy as much as I can ... and for whatever reason, I'm best able to do that when I'm not talking about it (with anyone other than P) ... we're using this time as a family for us and as selfish as that might be, I'm actually totally okay with it. There are times when I'm totally open to talking about it and others when I just don't. It's just strange, but I'm fine with it (which might be even stranger!)

In NTR (not Toot related) news, I'm feeling badly about how I treated my best friend in the world the other day. She called me with some pretty good news about her love life and rather than be happy and supportive and excited for/with her, I rained on her parade by being an overly cautious older sister. I could feel myself doing it, but didn't know how to stop. I gave her all sorts of advice that she doesn't need and rather than just let her glow in the good news, I pointed out all the negatives. Not because I'm not happy for her, but because I so worry about her getting hurt ... I am happy for her and hope that I can be more supportive in the future. And next time I'm preachy and annoying, I apologize in advance :)

Due Date

May 18, 2009.

The day that I've been thinking about since September 15, when we first found out we were pregnant. That this day is actually here baffles me. It amazes me that Toot has made it this far, yet terrifies me that our time with her is coming to a possible end. She has defied the odds, yet has so still has so much more to overcome. Today was such a weird day. I worked, which was a good thing, but all day people kept asking me when I was due and I would say, today. (Which FYI is not a good idea when you're taking care of someone's loved one. They instantly think you're going into labor immediately and get a panicked look on their face. Tomorrow, I'm going to change my answer to something a little more vague). All along, I've known that Toot could come at any time. Yet knowing that today is her day makes it that much more real. And reinforces the fact that I am so not prepared ... I'm not prepared to be in labor, I'm not prepared to give birth, and I'm certainly not prepared to say goodbye to the sweet little girl that has lived under my heart for the last nine months ...

Work kicked my ass today, not to mention that I'm a bit emotionally drained and I don't have the energy to write much more ... but wanted to acknowledge Toot's day. It will forever be her day in my heart. And I can't believe it's almost over ...

Not so blah!

Sorry for the depressing post on Monday ... I am feeling much better today, thank goodness. I think working nights really takes a toll on me that I don't quite appreciate until I'm down in the dumps and supremely emotional. I just don't sleep well and that has to be a huge contributing factor to the sadness ... but, nights are done for now ... poor P asked that I try not to work anymore for awhile because he hates seeing me like that. I'm back to days next week and definitely looking forward to it!

Today was supposed to be our 4D ultrasound with Miss Toot, but unfortunately, the portable machine wasn't shipped, so we're going to have to wait just a bit longer! Hopefully it will happen this weekend or early next week ... I am bummed it won't happen today, but know how lucky we are that it will happen at all ... and I am so looking forward to seeing sweet Toot's face!! I am still baffled that she has hair and I can't wait to look at it and look at her and see her dance ... it makes me smile just thinking about it!!

One of the things on Monday that I was so upset about was the fact that I needed to call a funeral home and figure out some stuff. I finally called, and I have to say, I feel such a sense of peace after calling, which I totally didn't expect. (By the way, every time I write/think about her funeral, she kicks me like crazy. I hope beyond on hope it's her way of saying, I'm not going anywhere just yet!) Anyway, a family friend had recommended a funeral home in my hometown because she has had good experiences with them. My hometown is very small, and I actually knew of Brian because he belonged to the pool I lifeguarded at 10 years ago. I am sure he doesn't remember me, but it was one more small coincidence that encouraged me to call. I called and he actually answered the phone (not the receptionist that usually does) and was amazing. He answered all my questions with such patience and kindness and also gave me some advice that I hadn't considered. He also told me that he and his wife lost a baby a long time ago and that they fully understand the emotional burden we're dealing with and therefore don't charge anything. Nothing. All of their services are provided free of charge. I was blown away. Funerals are so expensive. We will still have to pay cemetary or cremation fees, but they cover the cost of the caskett and everything else on their end. He told me to just call him when the time comes, and they will take care of everything and make it as easy on us as possible, no matter which option we choose. I hung up the phone feeling so much better than I anticipated. Of course I cried the entire time I was on the phone with him, but the fact that I know with all my heart that Toot's going to be in good hands the entire time she is on this earth is such a comfort. Letting her go when the time comes is going to be nearly impossible, but at least we know that she is going to be with someone who truly cares ... and understands. I know that she is going to be cared for with love, kindness and compassion and it makes me feel just a little less apprehensive about the whole thing ...

Blah

I'm not even sure what to write about today ... I just have not been feeling like myself and it's unnerving. I have this near constant headache that forces me to close my eyes and my stomach is in complete disarray ... It feels like I could sleep for two days straight and it just wouldn't be enough. I am not a big fan of feeling this way, because I don't know what is causing it. If I knew it was x, y or z, I'd be fine. But because it's this mystery, it makes me uncomfortable. Is it just being 9 months pregnant? Is it depression sinking in? Is it just that I have a little bug? All weekend I haven't felt like talking to anyone, or doing anything. I had little moments of spunk and pep, but mostly just laid around feeling miserable ... my father-in-law was here all weekend helping us with the kitchen, and it took everything I had to smile and be pleasant because I just didn't feel like being around anyone ...

In happier news, my doctor granted our request for another ultrasound, which I was thrilled about. When we met with the neonatologist a few weeks ago, she mentioned that one of our previous ultrasounds showed a question of duodenal atresia and that I wouldn't be able to feed Toot without an xray to rule out the atresia. I asked our MD if we could have another ultrasound to rule out the atresia and avoid and an xray and she totally agreed. So that was good. We saw Toot on Thursday and it was great :) She is getting so big! She weighs 4 lbs 5 oz, which is so tiny (less than the third percentile) but she's grown a lot in four weeks and it made me very happy!! She even had some hair on the back of her head, which is just so cute to me. My polyhydramnios has gotten much worse, and is definitely uncomfortable, but not too bad yet. I wonder if it is partially contributing to the way I'm feeling, but can't see how it would make me this blah ...

We're being treated to another 4D ultrasound this week (courtesy of my aunt) and I truly cannot wait. It is so nice to look at Toot just to look and not to look for things that are wrong. I feel so lucky that we're able to do this. I can't believe that it's going to be the last time we see her though before she is born ... I'm just so happy that we'll have another look at her in her cozy home, safe and sound :)

Reality Check

I am feeling so strange these days. I'm back working nights, which makes me tired and therefore emotional, so I'm sure that's contributing to how I feel, but I just cannot believe that I'm going to be giving birth in a few weeks ... and saying goodbye to my precious daughter that I love more than I knew possible.

Every once in a while I'll just be going about my day and then get hit with this gut wrenching feeling that Toot's not going to around much longer ... I'm so trying to treasure these last few weeks: every kick, every movement makes my heart sing; I've been reading books to her, and just trying to tell her everything that I won't get to when she's gone. It is so hard. And I am so not ready to do this. And I just cannot imagine not being pregnant. I feel like it just defines who I am now ... and once I'm not pregnant, who am I? I feel like I'm going to just be lost ... I love being pregnant. I love knowing that my sweet Toot is safe and cozy and warm in my belly. It's like the one thing that I somewhat have control over ... so what happens after she's born??

I had a bridal shower this weekend for one of my best friends. All the bridesmaids got there early to set up and when I got there, my friend's daughter was there. She's five months old and of course adorable. I never in a million years expected her to be there (why, I don't know) and I felt kinda blindsided. Of course I went and said hi (I hadn't her since she was born, before we knew about T18) but I cried when I did because it just struck me as so not fair that Toot doesn't get a fair shot at life ... then I felt bad for crying. And then I wondered if it would ever get easier? And I don't know that it will ... and then I heard the "you'll have kids someday" and I got pissed. Because I want this kid. I know and love Toot for who she is and I want so badly to watch her grow up ... I do hope and pray that someday we are blessed with a healthy family, but I will never for one minute forget about Toot. She is my precious daughter that I love and have bonded with and sometimes, I just don't think people on the outside get that ...

NILMDTS

When I first learned of the Now I Lay Me Down to Sleep organization, I spent hours scouring their website. I cried over the pictures they posted, the stories they told and couldn't imagine being able to see photos of myself and Toot. After talking with several people about how invaluable their pictures were, I searched for some photographers in my area and came across Sharon Reiley. I think I might have broken the rules when I contacted her directly, but once I saw her website, I just knew that this who I wanted to take pictures of Toot. I loved her website and loved her pictures. Then I found out that Sharon sadly and suddenly lost her firstborn son Owen two weeks before he was due to be born ... if anyone would understand what we're going through, it was her.

Sharon responded to my email instantly, and said she would be happy to help us. We met Sharon on April 14 when she came to our house for a maternity photo shoot. I was incredibly nervous, not just because I generally hate pictures of myself, but because I just wasn't sure what to expect ... I didn't think our house would photograph well, couldn't imagine where we would take pictures, how they would come out, etc. I needn't have worried because Sharon was awesome. She had sent us an email with some sample pictures to browse through, and also brought a book for us to look at ... we told her what we liked and didn't like and she got to work.

It was an incredibly emotional day ... one of those that I got through okay (or so I thought) but was really draining and caught up with me later in the afternoon. Sharon had said it would take several weeks to get the pictures, so I was surprised to get an email from her on Tuesday saying that she had mailed a disc with the photos. In her email, she cautioned me about looking at the pictures, "I feel I should warn you, these images are extremely powerful. I want to make sure you are prepared before you view them. It will be very difficult for you to look at them. They are filled with so much emotion, love, joy, and sadness... My heart aches to look at them. Please, make sure you look at them with Patrick together."

Needless to say, I was very anxious to see these pictures! But I am so glad that P and I made sure we were ready, because Sharon was right. They were incredibly powerful and emotional. I had no idea how sad we looked and just how much emotion you can really capture on film ... I usually hate pictures of myself, but these I love. I feel like Toot makes me see myself a little differently, if that makes any sense at all. Instead of critiquing every picture looking for flaws, I just looked at them and saw them for what they were. It's our little family and now I'll forever have us captured on film ... I am so grateful to Sharon for this gift.

We're so hoping that Sharon is able to be at Toot's birth. I feel so comfortable with her, and am keeping my fingers crossed that the timing works out okay! Sharon now has a 2 1/2 year old daughter, so can't just drop everything at a moment's notice but said she would do everything in her power to be there for us. I am confident it will work out, because sometimes, these things just do.

NICU Tour and Birth Plan

It feels like it's been a pretty eventful few weeks ... last Friday, we met with a neonatologist (we loved her) toured the labor and delivery suites, postpartum floors and the NICU at the hospital where Miss Toot will make her entrance into the world! I had never set foot in this hospital, and was happy that our MFM group suggested doing this. I am such a visual person, and I kept visualizing the only place I've ever seen a baby born - where I did my OB clinical in nursing school. Seeing where we will actually deliver makes me feel better ... it makes me feel like I have some sense of control - even though I know I really don't - and just gives me a small sense of comfort that I won't be in a totally unfamiliar place.

Talking with the neonatologist was incredibly helpful. We had a pretty good idea of what we thought things would be like when Toot was born, and she helped reaffirm that our thoughts were correct. She also helped us make some decisions about oxygen, etc. should Toot be born alive. I had been totally in favor of blow by O2 for Toot should she need it, but found out that if she were on oxygen, she would need to go to the NICU after delivery. Unless she is truly thriving, we've decided that we really don't want that. We want Toot with us, whether we're still in the labor and delivery room or if we're up in our postpartum room. Toot can get oxygen in the delivery room to help pink her up if she needs it, but the main goal for us is to be with her. I am so glad I know that now. The neonatologist said that even if we have no plans for Toot to go to the NICU, she can still be at the birth as a support for us. That just meant so much to me ... they are the ones who can best tell us if Toot is thriving or not, and just knowing that they'll be there if we want them to be is comforting.

We had another appointment with our MFM doctor on Tuesday (we'll see her weekly from now on) and she is growing on me! We went over our birth plan with her, and she seemed to think that everything we wanted was very reasonable and she was totally on board. I loved that. I also asked her about having another ultrasound and when I explained why, she told me that seemed "fair" and would work on setting one up for us. It's Saturday now and I haven't heard anything, but at least I know I'll see her again on Tuesday and can bug her about it then! We also talked with a social worker about our birth plan, and I just felt like they were really taking it seriously and would do everything we asked. I of course will still have nine copies with me when the time comes, but it's nice that at least it is familiar to staff that we'll be dealing with! We had some concerns about being moved immediately to a postpartum floor, and I asked if there was anywhere else in the hospital we could go. Our MD told us that we can go to a GYN surgical floor, rather than a typical postpartum floor and that made me so happy. I was nervous to be surrounded by other happy moms/babies and now don't need to worry about that. I also was concerned about our parents and sisters waiting in a waiting room with other happy, expectant families and I found out that there is another waiting area, as well as a separate meditation room where they can wait. This is going to be hard enough as it is, let alone being surrounded by happy families ...

We also talked with the social worker about funeral homes in the area ... it's so not a conversation I enjoy having, but one that is unfortunately necessary ... a few posts ago, I mentioned that the Catholic Church does not agree with cremation. I am happy to report that that information is not accurate! We still aren't sure which option we'll choose, but know that whatever we choose, Toot can have the funeral that she deserves. And that gives me a sense of peace. The cremation/burial debate is however still raging in my head. I just don't know what is right for us ... my parents offered to buy a plot in MA for us for Toot (which is where we would bury her if we choose that option) and it's just so generous of them and made me cry because they would do anything and everything they could for us ... I still think I might want Toot with us, but don't know how to choose. I talk to a social worker that I've known for almost 10 years, and she said I need to stop thinking of everything as right/wrong and black/white and just do what feels right for us now. And not to worry about months or years from now. And she is right, I just am so afraid of choosing the wrong thing ...

A Family Affair

P and I spent Easter weekend at my parents house, and I have to say, it was a great weekend. My brother and his family were in town for the first time since October 2007. (They lived in Oregon up until a few weeks ago, when they moved to Wisconsin to be closer to my sister-in-law's family). They were in Oregon about 5 years and while I loved it there, it was not easy to get to! It involved at least one layover and took no less than 8 hours ... it made for some long travel days! But, now that they're in WI, it's a two-hour direct flight to Boston, which hopefully means that I'll get to see a lot more of my nephews! Anyway, they were here, my sister was home and we all camped out at my parents house for the weekend. It was a full house: noisy, messy and just lots of fun. I so enjoyed being with my family, and I loved playing with those little boys! Quinn is just about three and Reece just turned one, so they are at great ages. I hadn't seen them since I went out to visit in September (pregnant with Toot, but not yet aware!) and they have changed so much!

I did well all weekend, until Sunday afternoon when we were getting ready to decorate Easter eggs with Quinn and all of a sudden I was hit with a wave of sadness that I'll never get to decorate Easter eggs with Toot. The thought just came out of the blue and made me so sad :( Then, my dad was bouncing Reece on his knee and I got sad all over again ... they were so excited to have a local grandchild and I couldn't wait to have Toot at their house all the time. It broke my heart to think of their pain ... I've been kinda selfish in only dealing with my pain, but I forget how much my parents are hurting too. Not just for Toot, but for me too. It must suck for them and I feel bad that I kinda forgot that for awhile ... they are so great though and when I talked to them about it a little, they just hugged me and said they understood. I am lucky to have such a great family and such a great example of what good parents are!

I'll leave you with a picture of our "fur baby", none too pleased to be wearing an Easter hat, haha!

Scattered thoughts ...

It has again been too long since I've posted anything! I need to get better at this :) It's been kind of a whirlwind the last few weeks and it doesn't seem like things are slowing down anytime soon. I can't tell if that is a good thing or a bad thing ...

We met with our new MFM doctor last week, which was fine. I miss the familiarity of my old office, but know that it's much better to deliver at W&I, because if Toot is doing okay, this is the place she needs to be. Our MD is nice enough, but basically said that if we don't deliver by 39 weeks, I'd need to be induced. She'd be willing to let me get to 40 weeks, but anything beyond that is just a waiting game for preeclampsia ... I am not thrilled about that, because I really and truly do not want to have to make a decision about induction. That being said, if we do have to be induced, part of me wonders if I want to be induced on the 18th since that is the due date in my heart and that way it would always and forever be Toot's ... mostly, I'm just praying that Toot has her own agenda. I feel like it's a lot to ask a little girl, but I really hope she comes when she is ready and that we're not forced to choose the date ... how do you choose the day your baby might die? It's just not something I think I can do ... She also said that we wouldn't have any more ultrasounds, and I'm not sure how I feel about that either. I love looking at Toot and want to know how she is progressing ... I understand we're not going to have weekly looks, but I think one more before she is born isn't too much to ask, is it?

The biggest thing on my mind lately has been saying goodbye ... I feel so morbid talking about it, but it's just our reality and one of the things that I lay awake at night thinking about ... It hurts when I do think about it, but I just can't seem to stop ... we have some big decisions to make in the coming weeks. I think I've mentioned this before, but my husband and I don't live in a place where we are planning on staying. Within the next three years, we plan on moving out of state back to MA (most likely closer to my parents). Because of that, I don't want to bury Toot here. But, I don't want to bury her in MA either, because I have no idea where we'll end up ... and I don't want her that far away during the next few years. Pat and I have been talking a lot about cremation (something I never thought we'd even consider), but I just found out that the Catholic church doesn't believe in cremation and therefore we wouldn't be able to have a true funeral for Toot. I want to have a funeral for Toot and I think she deserves to have that ... but I also can't bear the thought of having her far away ... yet at the same time, I envisioned her being laid to rest with a blanket and rosary beads and surrounded by all the things she's been given along this journey, which wouldn't happen if we chose cremation. Yet again, how do I choose the outfit to bury my daughter in? I feel so conflicted so much of the time, I just don't know how to make the right decision. If we choose cremation, Toot could be with us until we settle into a place we're going to be for the foreseeable future and we can eventually bury her with us, wherever we choose to be buried. That feels like the best option for us right now, but I feel like I change my mind every day ... I want to have things in place now though, because I know I don't want to do this when the time comes for us to be rushing to the hospital!

It is so strange to think of where we are now, compared to where we were a few months ago. I never thought I could have this conversation, yet here we are, discussing it like it's almost normal ... ugh.

Speaking of normal, we have so much going on the next few weeks. Easter weekend was crazy because my brother and his family were in town (more on that in another post hopefully) and this weekend we start demolition on our kitchen. Probably not the best timing in the world, but we're redoing our kitchen next week and I can't wait. It will certainly be stressful, but our current kitchen is hideous and it will be so nice to have a new one!! The following weekend I am working and hosting a bridal shower, then we have a weekend off and then it's Mother's Day (I'm working) and then I have a bachelorette party for my best friend. Then it's May 18. We have SO much going on, which in one sense is good because I still love distractions. But on our weekend "off", (May 1-3), I think we might try and go away. I feel like we just need a quiet weekend for a little family vacation ... I have this vision of Pat, Toot, B and I walking on the beach and just savoring our time together ... it makes me sad to think it might be one of our last weekends with Toot, but I think it would be nice to get away just the three of us ...

2 lb 10z Toot!

I am so bad at posting sometimes! I truly have the best intentions and then sometimes just can't bring myself to write because I feel sad, or I'm exhausted after work ... regardless, I feel badly that it's been so long! We had another ultrasound on Friday, and this is going to sound horrible, but it was somewhat of a letdown after the 4D scan! It was the first time I didn't cry, which took me by surprise, and it just wasn't the same in 2D as it was in 4D ... my aunt said she would do another scan for us and I am definitely going to take her up on that because it's so awesome to see Toot in such detail! I think I got spoiled :)

Despite the slight letdown of not seeing her in such detail, it was of course, great to see her. She's measuring about 3 weeks behind still, which is where she was at our last ultrasound at 24 weeks. So, in my mind, that is kind of a good thing. They calculated her weight at 2 lbs 10 oz, which only puts her in the 5th percentile for weight, but seems so big to me! Our due date is May 18 by my LMP, but after looking back at our ultrasounds, they're estimating that she's due closer to May 28. That 10 extra days seems like an eternity!! We're still going with a May 18 due date (that will forever be the due date in our hearts), but I'm preparing myself for Miss Toot to hang around a little while longer (which I am totally okay with. I think I'd be pregnant forever if it meant that she could be with me safe, warm and cozy in my belly). It's weird because on one hand, eight weeks feels like nothing, but the other, it feels like forever! Only time will tell, I suppose - it seems like that's the story of my life right now!

Beautiful Baby

Yesterday, we were treated to a 4D ultrasound of our precious little Toot and it made my weekend! My aunt works for GE (she used to be an ultrasound tech but now does sales) so she borrowed a portable ultrasound machine, came to our house and set up shop. It was awesome. We were able to stare at our little girl for hours. I loved every minute of it. It's amazing the detail that 4D provides. I feel like we know her so much better getting to see her just hanging out, dancing, stretching and sleeping. We got tons of pictures, and were able to record her heartbeat, a sound that I just can't get enough of. It was such a different experience from being at the doctor's where they're measuring her growth and looking for things that are wrong. We just got to look at her: her little feet tucked up in my ribs, her cute little bottom, her muscular little arms, her button nose and chubby little cheeks.


It was an amazing day, for both P and I. It's always a little sad at first to see her and know that things won't turn out as we hoped they would; she looks perfect to us. And poor P. I looked over at him at one point (he didn't know I was watching him) and a really cute image of Toot popped up on the screen. He looked at her, made this "oh" sound and just kinda stuck his bottom lip out to pout for a minute and then blew her the littlest kiss. It was adorable, but broke my heart. He is such a good dad to her, and such a good husband to me. We talked about it later and he said that he just wishes he could fix things, in his words "it's what I do; I fix everything". And he does, it is so him to take control, fix what needs to be fixed and save the day ... he's been doing it for me for years. I wish he didn't feel so helpless ... And neither one of us wishes we could fix Toot, because she isn't broken. This is just who she is, and I love her all that much more because of it. I just that we wish we could give her more of a chance at life. We're doing everything we know how, and I hope that she gets a chance to show everyone just how strong she is ... she's defied the odds and how can I not be ridiculously proud of her for that?

Seeing her totally reenergized me and I have a reneweed sense of hope and strength for the next 10 weeks. I fell asleep last night feeling so calm and at peace. I am beyond grateful to my aunt for giving us that gift ...

Academy Award

I think I must be a good actress. Everyone keeps telling me how strong, brave and tough I am. That I seem to be holding up remarkably well. One of the girls at work even commented that I always seem so happy. I just laughed and kept moving. I think if people could see behind closed doors, they'd feel a little differently. If they could see into my heart, they'd know that it feels like it's literally breaking, one piece at a time. I try and put on a good front, I really do. But today is just one of those days where I am not strong. I cannot seem to stop crying and feeling sad and thinking about a future without Toot. I want to curl up in a ball and not do anything. I have zero motivation. I don't have the motivation to cook dinner, put away the dishes in the dishwasher or take Bailey for a walk. I just don't have it in me today. I feel like the tears should dry up at some point, but they just won't stop flowing. And it scares me because I tend to think that now is the easy part. Toot is safe and warm in belly and I can touch her and talk to her and tell her I love her and feel her kick and know she is okay. What happens when she's gone? When everyone else moves on, yet you're feeling empty and alone? What then? This is so not fair and as much as I try not to wish things were different, today I do. I love Toot just the way she is, but I just wish I was 30 weeks pregnant and none the wiser to the pain and agony of dealing with this. Because sometimes it just feels like it hurts too much ...

Uncertainty yields Hope

Throughout this entire journey, one of the things I've had a hard time wrapping my head around is the uncertainty of what's to come. How long will Toot be safe in my belly? Will she make it 40 weeks? And even if she does, will she be stillborn? Or will she be alive? If she's alive, how long will we have with her? Will she get to come home with us? Or will we leave the hospital empty-handed and broken-hearted? It's tough to plan (and I am a such a planner) and it's tough to think of the future when there is just no guarantee ...

Over the last few days, I was having a really hard time with the uncertainty when I realized that without the uncertainty, there wouldn't be hope. If I knew for sure that Toot was going to die at 36 weeks, or that she would be stillborn or that we'd have just 8 minutes with her, I'd dread it. I'd dread knowing that I know the exact moment we'd lose her. Don't get me wrong, I am surely dreading the unknown, not to mention the fact that we most surely will lose her (at some point), but at the same time, because of the unknown, we have hope. Hope that things might turn out better than we expect. Hope that we will get to meet our little girl and stare into her eyes and tell her we love her. And hope that she'll get to come home with us.

Hope is so powerful and it's fluid. We got pregnant and hoped our baby would be healthy. We found out she wasn't, and we hoped that God would do what's best for her. We hope that she doesn't suffer and we hope that she just knows only our love and no pain. Without hope, I truly have no idea where I'd be right now ... so today, I am beyond thankful for the power of hope.

Bright Spots on a Dark Day

Thursday was one of my worst days in awhile. I felt despondent, overwhelmed and so sad that I couldn't stop crying all day. I had the day off, which is never good! Work keeps me focused and busy, and is the best distraction I could ask for right now. Anyway, even though the day sucked, there were two bright spots and I figured, rather than dwell on the sadness, I might as well talk about the good things!

I found Shannon's blog via the T18 site and have been addicted ever since! She is an amazing person, with a beautiful family. Her little Owen passed away in October, and her strength and dignity at how she's dealing with this are truly inspirational to me. I can only hope that I am mucking my way through this with half her grace ...

I received a care package from Shannon which touched me so much. In it was an outfit for Toot, a beautiful CD and the most adorable bracelets I've ever seen. Since we don't have an official name for Miss Toot yet, Shannon made me two bracelets, one for each of the names on our short list! (Kris, don't tell anyone!) Here's a picture of the bracelets:

It's the first outfit Toot has received, and of course the entire package made me cry. The kindness of a relative stranger just totally overwhelmed me and as my husband said when I showed him everything, there really are good people in this world. This is not a fun journey, let me tell you. But the fact that there are other people out there going through it and surviving and willing to help you survive just amazes and I cannot thank Shannon enough! I had been so afraid to buy anything for Toot, but now that she has her first adorably cute item of clothing, I think I might have the courage to add a few things to her wardrobe!

The other bright spot came when we met with an MFM specialist/geneticist at Women and Infant's. She was amazing and easily one of the most compassionate doctors I've ever met. She answered all our questions, told us more about delivering at W&I, and at the end of the appointment, said she would love to be our doctor. I've been so nervous about where to deliver, but Dr. O said she'll set us up with a tour of the NICU, a meeting with a neonatologist and would basically do anything else we needed. She gave us her cell phone number and said to call her anytime with any question we can think of. She was awesome and I think our decision is made.

I truly believe that every kindness we encounter is a small gift from God. Without them, this journey would be unbearable ...

Toot does NY!

My last post was somewhat debbie downer, so I figured I'd try and write one that was slightly more upbeat!

My husband and I took off Friday night to NY to visit my sister. I should say tell you all that I am very lucky in that my sister doubles as my truest friend in the world. I may be the older sister, but she is my confidant and has been a constant source of support, encouragement and love throughout my entire life. Sometimes it's as if she's the older sister ... she is a great aunt to my nephews, and is already the best aunt to my little Toot. I so enjoyed spending the weekend at her place and I love that she and P get along so well too. We truly had a great time.

We arrived at Penn Station Friday night and headed over to K's place. After a quick bite to eat, we all ended up falling asleep on the couch! Saturday morning we woke up, had breakfast delivered (which I just thought was the coolest thing!) and then headed to Battery Park so we could take the ferry over to see the Statue of Liberty. It was such a touristy thing to do, but none of us had ever seen it, and despite all the lines, I am glad we did! It's amazing to think of what Lady Liberty truly represents to our country. Here's a dorky picture of P, Toot, Lady Lib and I on Valentine's Day:


We took the ferry back to Battery Park, and then headed over to Union Square for a late lunch. NYC is so refreshing. We walked everywhere and there is just always something to do. I am not sure I could ever live there now, but I wish that I had when I was fresh out of college or something. I love visiting K there. She's been there about two years now and while I hate that she is far away, she really isn't that far away at all. Her place is great, and she is so happy there ... it's nice to see her in her element! After lunch, we walked over to Washington Square to meet up with friends at their place and just hung out for awhile. We all met up again for dinner in the West Village Saturday night. We went to this little Italian restaurant with live Jazz music and it was so good. And so not expensive either, which was great!

I felt alive and "normal" all weekend. I think I even looked happy a few times! It felt great to escape the house and our normal routine. P and I both enjoyed ourselves so much and it was very hard to leave on Sunday! We love making memories with Toot ... she is so a part of our lives already and I wish with all of my heart that someday she'd actually get to see the Statue of Liberty and NYC. I'm glad we'll have lots of pictures of her with us throughout this crazy journey ... she is our baby girl, our first child, and no one can take that away, ever.

P and I were kind of in let down mode (if that makes sense) on the train ride back and we were just talking about life and how it's hard to imagine things were so different two months ago before we knew about T18 ... we wondered if things will ever seem bright again because sometimes we both feel so subdued ... it broke my heart to hear him talk about how sad he is every time he sees a father with his little girl. He said he just always had this vision of a baby girl on his hip and Toot won't get to do that ... I always picture Toot as a two year old sitting on his shoulders laughing so I know exactly how he feels. He is going to be a great dad (he already is) and I wish I could somehow make this easier for him ... it is just so different for him. I feel like I am the lucky one because I get to be with Toot all day long. I feel her move, I talk to her, I just know her. He doesn't really get to do that although he finally felt her move for the first time last week and it was awesome. So bittersweet, but awesome nonetheless. Toot tends not to cooperate anytime his hands are on my belly, but she did last week and we both just smiled and cried ... our experience is so different than most people's ... sometimes it feels very isolating (more on that in another post) but it's our experience and we're really trying to make the best of it. We wanted a baby more than anything and yes things are going to turn out differently than we had hoped, but it doesn't change the fact that we love our daughter and are excited to be parents.

Bad Blogger!

I am sorry that it has been so long since I've posted! Sometimes I just don't have the energy to write ... or talk, or do much of anything besides work and sleep for that matter. But, a lot has happened in the last two weeks, so here goes.

P and I had an ultrasound and echocardiogram last Friday and got to see our precious Toot for about an hour. The ultrasound tech was awesome too and have us a ton of 3D pictures of her face, which was really neat. Toot didn't cooperate all that much though and kept putting her hands in front of her face everytime the tech tried to snap a picture. She was definitely the one calling all the shots ... the ultrasound tech had to chase her all over the place to get good shots. And at someone suggestion on the T18 website, we brought our digital camera to take some video of her dancing all over the place ... I think we even captured her heartbeat too, which I know will someday be a great source of comfort.

Our poor little Toot had a lot more markers of T18 than she did at previous ultrasounds :( She had choroid plexus cysts, pyelectasis, clenched fists/overlapping fingers, low-set ears, a big VSD (essentially a hole in her heart) and was also measuring about 3 weeks behind in growth. I also have borderline polyhydramnios (a diagnosis is made at amniotic fluid > 25 cm, I have exactly 25 cm) which puts us at risk for PROM and will make me very uncomfortable. At only 26 weeks, I am already starting to feel uncomfortable, my ribs (mostly on the left side, but occasionally the right) just ache and at times, it's hard to find any position that is remotely comfortable.

None of it means anything in and of itself, as everything we saw is common in T18 babies, but it kinda just reminded me of what we're dealing with. Before last Friday, there was nothing really suggestive of T18 other than the diagnosis itself and her growth restriction (which was only about 9 days behind). It made me think that maybe we were going to be one of the lucky ones and have a better outcome than what's predicted. I started having little flecks of hope and was thinking that maybe, just maybe, we'd get to bring our baby girl home!

Seeing everything we saw just brought home the fact that her prognosis is really just not very good. I talked to our doctor a lot about the likelihood that we'd get time with her and he basically said (very gently) that he never wants to take hope away, but that chances are, she won't survive labor and delivery. I spent most of the ultrasound with tears silently streaming down my face because quite frankly, it sucks so bad that she is going to die. P and I had a pretty sad morning that day ... it just hurts to much to know what we know. And that we still have such a hard road ahead is tough to process.

I've been reading a lot of other blogs by T18 moms and they are all so positive ... I feel guilty because while some days I feel very positive, there are others when I am just totally overwhelmed at what we're dealing with ... I think the body/brain have a way of only allowing you to cope with what you can at any given moment and for me, I think I kinda shut down to protect myself from the pain of all this. If I stop and truly think about the path we are on and the road ahead of us, it literally chills me to the bone. I have no idea how to do this. At times, I think I'm doing a pretty good job, but this is the easy part. I still have her with me. Every day I get to feel her move and kick and my love for her grows each minute. It's thinking about the future that overwhelms me. We are ultimately going to have to say goodbye to our baby girl and I cannot even begin to imagine the grief and despair we'll experience then.

My cousin lost her fiancee in a horrible car accident almost two years ago. When I talked to her about it and told her how amazed I was at how strong she is, she told me that at one point, she realized that she had a decision to make. She could either choose to be miserable, or she could choose to not be miserable. She chose to not be miserable and even though there are days she is, she still had a life to live and chose to do just that. I too have made a choice to not be miserable but there are days that I would like nothing more than to crawl into a hole and sleep. I don't though. I can't. I owe it to my husband and to Toot to live every day as best I can. I am fumbling through this the best that I can, but sometimes it just doesn't seem good enough.

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 ...