Wednesday, February 29, 2012

My Adorable Nephew, Layton!

 It's time for me to do my job as an Auntie and brag about my new nephew...

 On February 11th at 4:36 am Layton Charles was born weighing 6lb 15 oz! And he is perfect! A head of dark hair, tiny fingers and big beautiful eyes! He only looked like a newborn for a couple of hours, by the time we got to see him later that day he was, like I said- perfect.

Chrissy, Dave's sister, did an awesome job getting him here! She was induced on Wednesday and didn't have him until Saturday morning. Layton is very lucky to have her as a mommy! And of course, Travis as a daddy!

Max was starting to get sick the day his new cousin arrived, so he stayed down in the lobby with Grandma while Dave and I got to snuggle Layton. But then Dave and I got sick so we haven't been able to go see him again. It's killing me! I feel like he's going to be walking and talking by the next time I get my hands on him! And I'm pretty anxious to see what Max thinks of him!

Layton's Mommy gave me full bragging rights and permission to share some of his newborn pics- which I will happily do because he is seriously too perfect not to share...

Little Sparrows Photography

Possibly the cutest picture ever!

Wednesday, February 22, 2012

The Cemetery

It's maybe a mile from where I'm sitting now... I chose this specific therapy location not because it's closest to our house, but because it's close to those rolling green hills that just a year and a half ago meant nothing to us. Two days a week, I'm so close.

At first, I wanted to go there. I mean, as much as a mother can want to go to a place like that. For whatever reason, I felt a need to be there. To go and talk to her and make sure that as often as possible someone was there for her. At first, if I could have made sure that someone was there every day, I would have.

But lately, my feelings towards that place have changed. I hate to think it, I hate to say it- it feels like the words burn my mouth. But lately, it feels like an obligation. The amount of guilt that accompanies this thought and feeling is indescribable. What kind of mother feels like it's an obligation to go visit the place where her daughter rests?
I used to feel like I had to go there to feel close to Ellie. But I don't feel like that anymore. I've always felt that her spot is just where her body is, it's not Ellie there. The Ellie that we loved disappeared from a PICU room on October 24th, 2010. Sometimes, I still have a hard time wrapping my mind around the idea that it's really her body in that casket anyways. The baby that was in the casket when it was closed, did not even resemble our sweet girl... Her happiness, her joy and her sweetness are not buried in the ground.

It might sound weird or even a little hippie, but I really believe that the essence of our Ellie left her damaged little body and spread itself out into the world. And we see little pieces of it all around us...

We see her beautiful face in the pink and purple sunsets and sunrises.

We are reminded of her little attitude whenever a light burns out in our house- which it does quite often!

We see her joy and sweetness reflected in the kindness of others who so willingly contribute to Ellie's Light, and by those strangers who reach out and let us know that Ellie will not be forgotten.

Ellie isn't here anymore, but she is all around us. She is on my mind all day, every day. And lately, the cemetery just serves as a reminder of what we are missing. It's so obvious in our every day life and I don't like going to the cemetery and staring down at a beautiful headstone that bears my daughter's name.
Surviving the loss of a child is a conscious decision. Every day you have to choose to keep going on. And for me, that's easier to do if I focus on the happy memories and reminders of who Ellie was and what she is still doing even now as an angel. I really feel like going to the cemetery only sets me back.

Am I in a little bit of denial? Possibly. Am I trying to protect myself from things that I don't want to think about? Definitely. Is it selfish? I'm not sure...

I really don't think Ellie cares that I don't go to the cemetery as much. I still take care of her spot and make sure that decorations are placed for each holiday, but I don't just go out there anymore. It's a hard thing to put into words... I want to want to go out there- for Ellie. But I don't feel like I need to. There's a lot of guilt... It's hard to be at that place with that headstone that bears her name, but it's hard not to be there too...

As time goes on, I'm sure my feelings towards the cemetery will evolve. And hopefully, eventually, I can come to a place of peace about whatever feels right... Either way, whether I'm there or not, I miss my girl. I love her. And I am constantly thinking of her...

Tuesday, February 14, 2012

Our affairs

There's nothing to get you thinking like "getting your affairs in order."

Before Ellie was born, we had papers drawn up that would determine guardians if something happened to us, but couldn't sign them until she was born... After she was born, life got crazy and we didn't ever do anything with them. Then life really got crazy- Ellie died and we learned Max may need special care for his whole life. Now that we are expecting the twins, we really need to at least get guardianship papers done drawn up and SIGNED. Well this just opened up the flood gates and we decided just to go ahead and do our Power of Attorney, Health Directives, Will and a Special Needs Trust for Max.

The paperwork is extensive, tedious and repetitive. Our Friday night excitement last week was going over our health directives. Dave and I definitely had different takes on how detailed we wanted to be with the paperwork. Dave's responses were pretty generic but I want to be very specific on what I want in certain situations.

Generally speaking, I think I've always been more of the type of person that doesn't believe in prolonging a "life" that is sustained only by machines. I truly believe that this is an individual belief and that each situation is different, calling for a different solution... But for me, I don't want a life spent in a hospital or relying on machines. If I can't reasonably enjoy life- I don't want it.
And this is fairly obvious when you look at my responses to the questions. Many of them have DNR/ DNI written in them, as well as comfort cares. I kind of felt like an old lady filling out these forms instead of a 29 year old. It's not that I don't want any medical intervention at all, I just don't want it if it's not going to change anything. I say this, but then I think of what we put Ellie through...

At one point a doctor taking care of Ellie said, "we've through everything at her but the kitchen sink. And if I thought that would work, I'd throw that in too." Ellie had almost every type of blood product available- she almost tapped out two hospitals worth of type specific blood. She had her own intensivist. More specialists than I can probably even remember. When we made the decision to go ahead with ECMO, we were told that there was less than a 1% chance that it would save her. It was that, or nothing. She was going to die. But we could try this one last thing. I don't even really think that we discussed it. Of course we would try.
Knowing what I know now, and having the understanding of what was really going on in her body at the time, I'm not sure that I would make the same decision. ECMO never really had a chance of working. Not for what was wrong with her. And it took a terrible toll on her already damaged body. If we had decided against the ECMO, we would have had several more hours with her. Holding her. Loving her.
But who knows, maybe I would still make the same choice. Even if it's only a 1% chance, it's still a chance. And when you are making it for your previously healthy and happy perfect nine-month old, that chance is all that matters. When we woke up that morning, we had no idea what we were facing. Even so, there is no way to prepare yourself for these types of decisions.
I think that when it's a child you just try for as long as it's reasonable. But even though no parent ever wants to say that its ok to stop treatment and just provide comfort until it's time to say goodbye, sometimes that point will come. For us, that point was obvious. Painfully obvious. It's not always that obvious- with children or adults.

After working on the oncology floor in a pediatric hospital, I saw many families struggle with these decisions. I've taken several classes on the dying process and bereavement. There is no clear cut way of doing things. So I guess, as an adult, it's a "nice" thing to do for your spouse and family- you know, to tell them when they should just let you die. Really, in the end, you are at their mercy. If you don't have the ability to speak for yourself, it's out of your hands.
It's the same with the whole cremation or burial thing... For us, we already have our burial plots purchased. Not exactly something that all healthy 28 year olds purchase, but we wanted to be with Ellie. So there's that... Getting your affairs in order as a young mom is definitely a little depressing and slightly overwhelming. But I'm not afraid of dying- I don't want to leave people behind, especially children who need a Mommy, but if something catastrophic happens, it happens. So I guess we should just write it down for everyone. Plus, when you already have your burial spot picked out- why not?

So for anyone that may someday be standing by my bedside making all sorts of big decisions, remember this- unless I can reasonably enjoy my life, just let me go be with Ellie. 

Sunday, February 5, 2012

My Computer is annoying

I have been mostly absent the last couple of weeks because every time I put pressure on my keyboard or move it, it shuts off.... Definitely doesn't sit well with my pregnancy hormones! So I've just been avoiding my computer lately!

Anyways, we did hear back from the gym that was rude to Max and his friend, A. A's mom and I were a little confused by their response. The owner didn't seem that apologetic for the rude behavior and basically stood by their decision that children either need to leave the floor or participate in circle. I understand their reasoning, but think that they need to make it obvious to everyone, at the beginning of "open" gym. Otherwise, it becomes unfair to children that cannot participate. Had we known at the beginning of "open" gym that circle time was required or else we had to leave the floor, then I would have planned to have Max have a snack during that time. But when they wait until a child presents themselves that can't participate, it appears (and feels) like that child is being singled out due to their disability. And this doesn't sit well with their moms!!
The owner offered us a free pass, so I think we will go back again and see how things are. Regardless of how they were treated- they didn't know it. And they really liked it there. So we want to take them back... hopefully they've made expectations clear from the beginning.

I've been busy with trying to get things done before the babies arrive or I'm just too big to do anything! I am 23 weeks, 4 days today and I can't believe how fast things are going! I am definitely feeling an urge to get things done and done soon!! The nursery is getting painted this week and as soon as it's ready I'll show some pictures!!


Ellie's Light

Fleece Blanket Drive in honor of Ellie's 2nd Birthday!

We will be collecting new fleece blankets for the Children's Hospital until Feb. 15th. If you would like to donate one- click HERE for the details!!

Thank you!