Friday, January 27, 2012

Our babies

Derrick's mom has always said that Gabriel looked just like Evelyn, I saw it but not like she did. Tonight Derrick noticed that two of their pictures do in fact look VERY similar. I had to share...

She's right, the do look incredibly a like.

Wednesday, January 25, 2012

Gabriel's Memorial Video

I spent a lot of time putting this video together, I put my whole heart and whole soul into it. When I finished it, I couldn't upload it to Youtube because I couldn't figure out how to get around the copyright issue with the songs. I couldn't even figure out how to do it legally.... So here it is.

on the bottom right corner of the video there is a button to click for full screen, but the pictures are better quality when not no full screen.
Have your speakers on, the pictures go with the music playing in the background.

Tuesday, January 24, 2012

A Biology Lesson

Today I went and met with the genetic counselor Maggie. We met with her right after we got our diagnosis and she was able to give us a little information then, but I emailed her the results of the chromosome test and set the appointment to meet with her again. She is such a wonderful caring individual. I went in not knowing what questions I should be asking, what information I should be seeking, and unsure of how much she'd be able to tell me.

For all you scientists out there...

In all Gabriel's tests he had an extra Y chromosome in the 23rd set of chromosomes - XYY. This much we knew when we read the results. Our doctor had filled us in on that. But the thing is, there are many people out there wondering the world with an extra Y chromosome.

Everybody has 23 chromosomes, each set as 2 - an X and a Y. Inside each chromosome are genetic codes (the lines in the chromosome itself). The genetic codes make up who we are (eye color, hair color, etc etc)  This would be Gabriel's chromosome chart - the 23rd chromosome has 2 Ys.

Where does the extra "Y" come from? 
Boys with XYY chromosomes have an additional Y chromosome from their father. In the majority of cases, the two Y chromosomes failed to separate during the formation of the sperm. This is not hereditary - its just a fluke, a malformation in a single sperm cell.   An extra Y chromosome cannot come from a female because we only carry X chromosomes (If it had been XXY it would have been an issue with my egg...).

Thousands of people have an extra Y - few of them end up with Potter's syndrome.
There are thousands of people wondering around with an extra Y chromosome, 1 in 1000 births.  Most never even know they have the extra chromosome. People with an extra Y Chromosome have a normal appearance but are often tall, there is no significant increase in medical problems or illnesses. They are generally average for intelligence but may need assistance in learning and school. There's usually no problems with puberty but may be some behaviour problems and increased vulnerability to stress. Overall they live normal long healthy lives but  a few end up with Potters Syndrome.

Not all Potters Syndrome babies have an extra Y chromosome
Only a portion of Potters babies have an extra Y chromosome. So having the extra Y doesn't CAUSE Potters Syndrome. Somehow Potters Syndrome is associated with the extra Y and the extra Y is associated with Potters Syndrome - but they aren't sure how.

Other possible causes
If both Derrick and I are carrying a recessive gene for Potters Syndrome, and Gabriel happened to get both recessive genes, then its possible its hereditary. She says thats unlikely since we don't have much known kidney problems running in our families. Derrick's cousin does have 1 kidney, but she said that isn't linked because the gene would have to travel through so many generations to get to Gabriel, its nearly impossible to have it travel that far without having signs and symptoms in our families.

So basically, the result is this:  1 in 1000 births have an extra Y chromosome, of those most live perfectly normal long healthy lives while SOME end up with Potter's Syndrome, but not all Potter's Syndrome cases have the extra Y chromosome... Confusing? YES!

She said that unfortunetly with genetics there are no guarantees, they can't say 100% on anything. But this seems to be a common occurance in our situation - so we're getting used to it... unfortunately. They couldn't tell us anything for sure during the pregnancy or after the birth. Now they can't say for sure that Gabriel's condition was caused by the extra Y chromosome (although this is the assumption right now) and they can't say 100% that it wasn't caused from a recessive gene. They can only tell us what they THINK caused it to happen.

She said that because he had the XYY chromosome that was most likely the cause of his Potters Syndrome, if this is the case then our risk is VERY low of reoccurance - (she said in genetics they can't say 0% but its down near there somewhere). If it was hereditary (recessive genes) then it would be 25% reoccurance risk.

Genetic Testing?
A person has THOUSANDS of genes in their make up. Testing for a recessive one in our genes is nearly impossible as they would have no idea where to even start looking. A possibility? Yes, but most likely they would find nothing even if they tried. So not currently a realistic option for us. Although, if we did have another child with Potters Syndrome in the future, if the baby had the extra Y chromosome then we are just very very unlucky. If the child had Potters Syndrome but no extra Y chromosome, then we'd assume it was hereditary and look further into testing. I am going to send her the results from the autopsy so she can show her Genetisist colleague to confirm that there's no further recommended testing.

Sad that we couldn't get more solid answers and explanations of why it happened, but glad that I understand the scientific cause of this condition (even if your beyond confused after reading all of it!). It makes sense in my head, I'm just glad to hear (again) that we have a very low risk of it happening again. And the official end result - unfortunately, I  now know more about genetics and chromosomes than I ever imagined or thought I would - and wish it wasn't because of this that I finally have a semi-understanding of these things.

Sunday, January 22, 2012

New "Normal"

Another Page Turned
Every sunset turns another page in your story. This statement fit into my day quite perfectly. Today, was my first day going back to work since Gabriel was born.

Driving to work this morning was packed with thoughts. I started out driving on the highway past the cemetary. I waved hi to Gabriel and told him I love him, then proceeded to think about the last 6 weeks since he was born, everything we've gone through, everything we've done, every motion and every emotion. Driving to work felt like we were starting the next chapter - getting back into our "normal" routine.

When I arrived at work - just before opening the door - I looked at my phone and had recieved an email. I'm the curious type so I had to check it, it was Carly from Christian's Beach! They took Gabriel's photo last night! SO excited! Now I can send her some money and get the digital copy of it emailed to me. Here's the preview photo:

She also puts a memorial on her blog, its whatever you put when you submit the name request, here's the link where you'll find his memorial :
So my thoughts were this:  Last night his photo was taken at sunset closing that day and also closing that chapter of our lives and moving into the next - getting back to normal. A message from Gabriel? Maybe...

Returning to work:
I was nervous about going back to work, what would people say? How would people act around me? How many times would I repeat the story? How many times would I start to cry?  After talking to some of Derrick's family, I went in with a plan: If it got to be too much I would simply say "Lets just talk about today for right now, ok?"

But it went well, when I got there everyone was warm and loving: "Welcome back!" "Nice to see you back!" "So good to see you!" and two that were a little tougher...
"Where've you been?" - ok, I realize I didn't shout our situation from the rooftops, but you didn't notice that my middle was getting a little... round? But ok, I'll play along - "I was on medical leave." Done.
Then there was:
"Did you have your baby?" This came from the people who noticed I was pregnant, but never said anything and never were told the conditions of this pregnancy... So a hard one to hear. I Just told them that the baby only lived for 35 minutes, he was beautiful and perfect, just had no kidneys."

It was a good day, it was busy but not too busy, I wasn't hounded by people like I worried I would be. People were very respectful of my return. It was a great day overall - and the best part, I didn't cry even once :) in fact, I found that it felt pretty good to be talking about him and sharing his legacy. It was also a subtle way of raising awareness for pregnancy and infant loss awareness and making sure he lives on, through our story.

Today, I learned that my younger brother has skype (that punk didn't bother to tell me this???) so we've been skyping all night, I was able to send him pictures of Gabriel and others of our family. I was pleased to finally be able to share with him the details of the morning Gabriel was born by showing it to him :) 

So all in all a fabulous day -  Learning the new "normal".

Monday, January 16, 2012

Post Pregnancy Appointment and Questioning Faith

A small disclaimer for me
This post is honest and true. Specifically when I'm talking about religion. I'm including this blog because its been a huge topic this week for us, and its a very real part of the grieving process. I've confident that this is also a normal part of the grieving process, its not uncommon to question your faith and where you stand on related topics. I'm not seeking religious advise, I'm not seeking religious pity. I'm simply laying all my thoughts and feelings out there for the world. Please do not batter us for how we feel and our thoughts, we can't stop our brains from running its course.  Trust that we will get the pieces back together, hopefully soon.

Post Pregnancy Appointment
This last week, I had my post pregnancy follow up appointment. It went well, we talked a lot about our experience and did the normal post pregnancy check up stuff.  I had to laugh though when they asked me to fill out the typical post partum depression survey.  I asked them before they had me fill it out if they really wanted me to fill it out honestly - because it was going to make me look like I belonged in the looney bin. They said yes because of course they take into account our situation and what we are going through, so I did, and actually surprised myself. I didn't seem as bad off as I imagined it would appear.

A hard topic to talk about was birth control and future pregnancys. As I explained to my doctor, there is a desperate want to fill our empty arms as soon as possible - thats to be expected. How would a person, who is supposed to have a tiny baby right now, not feel a need for that. They say its "empty arms", I've learned that is a literal explanation. It really feels like you have empty arms. I made a point that apparently, pills don't work for me. We've had 3 babies conceived while taking the pill, a miscarraige, Evelyn and now Gabriel. So we disgussed IUDs as an option, but neither of us are really comfortable with that. My biggest fear is that if putting hormones into my system through pills doesn't work, what if the IUD doesn't work. Usually if you get pregnant with an IUD, they have to remove the device and the baby generally comes with it - as sad as that is. Do I want to risk going through that???  But her biggest concern was that we don't give into the feeling of want for another baby too soon. She warned that we'll have to make sure we are healed enough to handle the stress of a pregnancy after a loss. Dealing with the stress and paranoia of that pregnancy is going to be hard enough, it'll be even harder if we are still in the deep dark depths of the grieving process. In my experience, I don't get a choice in when we will reproduce - it just seems to happen regardless of our attempts to control it.

Before I left, she gave me some dates and times for a support group thats fairly nearby. She gave me a list of times and the name of the main contact. Her name is Dawn, she's a midwife at Woodwinds, she lost a son to Potters Syndrome 15 years ago. Derrick knows her, I talked to her and she seems like an amazing person.  Derrick and I talked about it, we're going to try to go to the first one in February. We don't know if its going to help us, if its going to benefit us, but we know we want to at least try. We won't know if its going to help unless we experience it.  Dawn said that if a support group doesn't suite us, she'd be willing to do "one on one" sessions if that'd be better.

Then they stabbed me with a big long needle because they had no record of my last Tetinus shot... nice. I don't do needles, I'm petrified of them. Yes I realize I've given natural birth twice and therefore a needle should seem like nothing - but that doesn't change my irrational fear of them.

Questioning Faith (open and honest  - I realize this is a sensitive subject - see above disclaimer)
In the greiving process its bound to happen for some people, and I am one of those people. Twice in the last week I have found myself questioning where I stand instead of finding strength in my religious beliefs, and I find I'm not alone. Derrick has also questioned what happens to us when we die, he was born and raised Catholic and even attended Catholic school his entire life, his faith has always been rock solid.

Neither of us want to think of the possibility that we as humans are just that, human, we die and nothing comes of it.

Today, I don't know where I stand. In some ways I want to believe there is an afterlife:  Heaven, Summerland, Deva loca, Eden or whatever it is. (But if there is such a place, is it super crowded with so many people that have passed on?)  In otherways I find it possible that we'll reincarnate, or - do our spirits just wonder the earth aimlessly?

This week, while texting with my mom about "sky dandruff" (snow) and how crazy it is that we have had so little of it so far this winter, she commented "Maybe God needs dandruff shampoo" and followed it with:  "I hope God isn't listening". Thats where my questioning began,  I said ""God doesn't hear me so I don't particularly care what he thinks if he does hear me." I may have been feeling a bit hostile at this moment of my grief.  In this journey, I prayed. Mostly it was to "God" and when that went unanswered it became "God or whatever God hears me". But since my prayers continued unanswered, I started to wonder if any "God" really exists, which throws a huge query in the equation when thinking about what happens when we die.

Then Derrick and I began talking about "afterlife". Of course, all of the forementioned topics came up. We've both agreed that there is something after this life. We've both had experiences of the "supernatural" kind, things that can't be explained in a physical sense. So we have both ruled out the option that nothing happens when we die, based on our experience, there has to be something after this - we just can't prove what it is.

If we reincarnate, does that mean Gabriel will have reincarnated and I won't see him when I die? Is it unreasonable to hope that this isn't the case? If we don't see Gabriel when we die we'll both be upset (or will we be able to be upset?)  This is the only thing right now keeping me from being afraid to die, the thought that I'll be able to see and hold my son again.

 I want to believe that someday I will see my Gabriel again, hold him, hug him, kiss him. I want to believe that he is watching me and guiding me. and that he's there (wherever there is) waiting for me.

I know I'll get back to having strength in my faith. I know that all of this is just part of the journey and I have to work through every aspect of it. Its just not easy to do...

Why TV, Why?
Why does it seem like everywhere I turn there are pregnancys and new babys? For example: Saturday night, Derrick and I were watching a few of our typical Netflix shows, Cake Boss and Bones. The final episode we had to watch of Cake Boss, Buddy has his fourth baby - a boy. Of course his wife found out she was pregnant on an episode we watched shortly after Gabriel was born... 

On the show Bones, one of the characters found out she was pregnant on an episode we watched shortly after Gabriel was born again and on the episode we had left to watch, that woman has her baby. Then  "Bones" finds out she's pregnant too. In both shows, the parents experienced that "glory moment", you know what I'm talking about. The moment (whether you've experienced it or seen it on TV) when the parents see the baby for the first time and they are so excited to be welcoming such an adorable and perfect bundle of joy into their lives...The moment when they are so joyous they are crying and smiling and staring at their new baby... The moment with Gabriel that lacked so much normalcy... Yes, there was an incredible amount of love and instant attachment with him, yes we stared and cryed, but it wasn't the same. Its incredibly hard to explain and I've done the best I can. I see these moments on TV and it feels like its constantly throwing in my face that I was pregnant for 9 months and don't have a baby to show for it...  I guess its just bad timing. Maybe thats the universes way of helping me threw the grieving process. 

Wednesday, January 11, 2012

Keeping Busy

In the last week, I've been very busy. Evelyn has been sick with some sort of tummy virus with everything included (vomiting, the runs, etc). In between taking care of her, I feel like my brain waves are flowing, I'm focusing on the positives that can come from the greiving process.

As you can see, I've changed my blog layout and design. I created a personal header and changed the background. I also added some items to the sidebar and some links. I am in the process of adding and editing links and pages so people can access more information.  I'm sure I'll change it a few more times, so don't be surprised when it doesn't look the same when you return next...

I've scheduled my post pregnancy follow-up for tomorrow. I can't believe it'll already have been 5 weeks... She should be writing me an approval to return to work on the 22nd... Although I'm a little worried about returning to work. I'm just scared of what people are going to say to me, how many times am I going to repeat our story, am I going to make it through each day without crying?

I'm working on making an appointment with the genetic counselor to go over all the test results and get more information. I'm trying to list out my questions but I'm not entirely sure what I should be asking...  I don't think Derrick will be able to go because of work, but I have him giving me his questions so that I can make sure all his questions are answered too.

I've also been in touch with other moms who have gone through Potters Syndrome and other pregnancy and infant loss situations. Some have contacted me, others I have contacted. Its comforting to feel like I'm not alone through this healing journey. Its also comforting to hear other peoples stories and know that they have learned to cope with their new sense of "normal".

Christian's Beach
 I found an awesome site called Christian's Beach. Its a woman in Australia who lost a son in 2007. After her loss, she had a dream of her son drawing his name in the sand. So she started a business writing names in the sand of infants and children and taking a photo of it at sunset, I've been surfing her website and the pictures are BEAUTIFUL and all of them are different from eachother depending on the color of the sunset. So I put in a request to have Gabriel's name and photo taken. I can't wait to see what colors he gives us!  There's a long waiting list because she is fairly well know, but his name is officially on the list so hopefully we'll see the photo in a few weeks! 

Since I haven't been working, I'm not sure how we'll afford to buy the digital photo. I'm sure we'll find a way to come up with $25 to buy it. 

I also found a website where the have pregnancy and infant loss awareness shirts. My mom is going to order us each one in the next few weeks. I chose to customize the ones for me and Derrick because the one I picked for Evelyn is already perfect. I can't wait to get them! Hopefully in the future I can get more :)

Prenantal Partners for Life
I have been communicating with Mary from Prenatal Partners for Life for a few months now. We got in contact shortly after our diagnosis and she has offered me a support and information. The organization is truly amazing, they are helping cover the cost of Gabriel's headstone (which we have yet to pick out) and sent me a care package before his arrival. She got me in touch with other parents who have gone through a Potters Syndrome Journey before us and gave us information about carrying a baby to full term when you have an adverse diagnosis. Yesterday, she asked if I would be willing to write Gabriel's story to add to their website. I was honored. I hope other people will see our story and hopefully get some encouragement and support from his legacy.

Pregnancy and Infant Loss Awareness
I've also been working with Derrick's sister Andrea to try to get out there and raise awareness to pregnancy and infant loss. We haven't figured out exactly what we are going to do or whats going to happen with it, but she's really jumped on this opportunity to help us. Focusing on something like this has really helped keep me positive. I have noticed that there aren't a lot of support groups out there close to us - we would have to drive like 30 minutes to get to one, perhaps I should do that. Or what about doing a 5K walk in our area? The closest one is like 40 minutes away.

 I definitely think I'm going to create a pregnancy and infant loss awareness calendar (probably for 2013 because it'll take some time) and sell them, the money would go to a charity, or to a group to help bereaved parents or possibly to research various birth defects. I think I would change up the organization each year to benefit a variety of circumstances. The trick is creating a design, I was thinking of doing a different pregnancy and infant loss awareness ribbon on each page with a quote and a different background... or maybe doing photos of babies born/died in each month... I'm open to ideas, suggestions and thoughts on this calendar idea - or suggestions of other ways to get involved.

I'm also planning to take some tax money and put together little packages for hospitals. I would design it to be given after a person has lost their baby. It would have playdough for them to make foot and hand prints (it works better than the clay kits), it would have a disposable camera, a baby outfit, a awareness ribbon magnet to put on their car, maybe a necklace with a charm or a bracelet of some kind, and an awareness ribbon pin. I would pick a different hospital each year and put together a few of these baskets for them to give away. I'm not sure of everything I would put in it, these are just ideas I had flowing through my brain this week. If you have suggestions on items I can put in here (that won't cost a ton of money) or want to help donate something to the baskets just email me and let me know.

Doing all this makes me miss Gabriel, it takes me back to remembering everything we went through. But it gives me motivation and inspiration to have something great come out of this experience. I hope Gabriel will continue to lead the way for me as I figure out exactly what my calling is...

Sunday, January 8, 2012

1 month

Today, Gabriel would be 1 month old. Sometimes it feels like it was just yesterday, othertimes it feels like its been an eternity of heartache. Its hard to think that we should have a 1 month old and how life would be now, what things we'd be doing with him. How would he have changed and what would he look like now.

I experience a lot of anxiety about things. I worry that something could happen to Evelyn, that something or some illness could rip her from our arms just like Potters Syndrome did to us with Gabriel. I worry that other friends and family could be ripped from our lives, or that something could happen to us.

Often times, I find myself wondering into Evelyn's room to check that she is still breathing and doing ok. When I wake up in the mornings and hear her laughing, playing and "talking" I feel a huge sense of relief that she's still here and she's ok.

I hope the anxiety of tragedy fades in time. I know that it'll never go away completely, but I hope it lessens some so my heart and mind can rest. Its hard to constantly worry about everyone and everything all the time. I find it emotionally draining.

Life After Gabriel
Life after Gabriel is a roller coaster ride. Somedays I am fine and only think about him sporatically. I can get out of bed with confidence and feel strong throughout the day. Other days I think about him all day long and do everything in my power to not be an emotional mess. On those days I find it hard to balance the grieving process with everyday life.

I've learned a lot about myself in the last month, mostly things that have to do with how I greive. I apparently get very tired. I'm always tired, I could sleep all day long. It doesn't matter how much sleep I get, I feel like I could sleep more. I feel tired a few short hours after I wake up. I think that is my way of avoiding dealing with life after tragedy. I force myself to stay awake and go about life, its not easy, but I know I can't hide in my bed forever.

I usually go out to the cemetary about 5 days a week. Usually after I drop Derrick off I make a quick stop out there to say hi and start my day. Evelyn has become quite familiar with the cemetary now and usually knows where we're headed when we get out of the car. Sadly we don't have a headstone yet because they have to wait till spring thaw to place a marker. We haven't bothered to pick out what we want yet since they can't place it anyways.

At Christmas my mom bought a bunch of angel ornaments for our families to put on their trees. She wanted to get Gabriel's name engraved on them, but because they are round and not flat she wasn't able to get them engraved. She did however, find a woman who does a sort of calligraphy on various items for a price. After my mom shared her story and her trouble with getting them engraved,  the woman offered her services for free. Before Christmas, my mom bought a hook and hung an ornament for Gabriel. Its a perfect way to mark where he sleeps.

"Everytime a bell rings, a faithful angel gets its wings"

On many days, when I park the car, I can see his ornament glistening in the sunlight, sparkling and alerting me of his location.  When I peer down at the ground where my precious son lays, I see things people have left for him, our rubber ducky, flowers, and writings cover the ground. It comforts me to know, people have visited him, are still thinking about him and and make the effort to drive to the cemetary to see him... I have a whole new perspective on cemetarys and people's resting spots and I will always remember to visit people and leave a little something for them - partly for the comfort of the families that visit and see those things...

I hate that I don't get to tell my son how much I love him while holding him and rocking him to sleep, instead I stare down at the dirt and hope he hears my prayers. I tell him all about our lives, who we are, the things his older sister is doing and places we're going. I tell him that I think about him all the time, how I wish he was here...

Life after Gabriel is hard, its emotional and raw. I feel like my heart gets yanked straight out of my chest whenever something triggers my greif.

I should have a 19 month old and a 1 month old. Instead I have a 19 month old who is with us and a 1 month old who parties with the angels...

Saturday, January 7, 2012

Seeing a pregnant woman...

When Gabriel was born, someone from Derrick's work gave him a giftcard to Applebees telling him to take me out some night for dinner. A thoughtful way of ensuring I got out of the house and was much appreciated that we wouldn't have to worry about paying for dinner.  So tonight, we went out. Evelyn, Derrick and I settled into our booth and started looking over the dinner menu. Soon out of the corner of my eye, I spot her. A woman appearing to be towards the end of her pregnancy sitting ahead of me in perfect view...

I instantly started thinking, Gabriel would have been 1 month old tomorrow, and we just passed 4 weeeks since we said good-bye - its been a rough emotional week to say the least.

I couldn't help but watch her lovingly stroke her giant pregnant belly, excitement and anticipation written all over her face. It took all my effort not to start bawling and walk out of the restaurant. I kept fairly composed, eyes welling up with tears as I watched her enjoying her pregnancy, her baby... I couldn't stop looking.

Derrick noticed I was struggling to keep my emotions controlled, he asked if I was ok and I told him what I was seeing, what I was thinking and what I was feeling. He offered to switch sides, and oddly enough I said no. While watching this woman was breaking my heart, at the same time I was enjoying thinking of our Gabriel and his life with us, and I was so happy knowing she would soon be enjoying a sweet bundle of joy - even though by my tears and face you wouldn't know she was also bringing me a sense of happiness...

I didn't eat much of my dinner, even after she left. I was thinking about my sweet Gabriel the whole time and so my mind was pretty pre-occupied...

This is the first time I've had an emotional, public, display of grief and sadness for Gabriel... And not one that I prepared myself for.

Wednesday, January 4, 2012

On Gabriel's due date....

Today marks the day I should have been 40 weeks pregnant... I've spent the day adding things to our blog and reading through other peoples blogs too. Somehow, adding things to our blog has made today easier, it seems to be helping me cope with my emotions.
It makes me sad to think that we would have been full term today, it also makes me think back to everything we've gone through, how this journey has changed us, and the last few weeks living without Gabriel here. 

I wonder, if we hadn't been forced to induce, when would he have arrived? What would he have chosen as his birthday?  Perhaps it would have been the day after Christmas which is the anniversary of the day my grandfather passed away... Maybe he would have been the last baby born in 2011, 12/31/11 at 11.59pm and lived into 2012 to passed away at 12:34am... Or, maybe he would have made the news "First baby born in 2012 dies of Potters Syndrome." That would possibly raise awareness to Bilateral Renal Agenesis... The crazy ideas that run through my head sometimes. The grieving process is a wierd thing.

I finally walked down and got the mail today... its been awhile  (Sorry mail guy!)  Still recieving cards from people who continue to send thoughts and prayers. Its amazing the support a person feels when they open the mail and see all the cards people send. However, amongst the many cards, bills, baby magazines and advertisements, I recieved an insurance card from MN Care for Gabriel. Is this some sort of cruel joke???  They should know what the situation is, they've been being billed for all our medical care from the beginning, they should have records of the diagnosis and they should have records of his passing? Right?

Guess thats just one more thing I'll put in his scrapbook - when I get myself up to finishing it... Derrick bought me a Cricut machine for Christmas. I was so excited to put it to use on Gabriel's scrapbook - but now I can't get myself to do it. Instead, I used it to cut out little cupcakes for each of our birthdays on our calender- I did get myself to put one for Gabriel's birthday too. I have used it on our book, and Evelyn's book, but can't get myself to do Gabriel's...

Pregnancy and Infant Loss Awareness
All I know today is that somehow, I want to help raise pregnancy and infant loss awareness. How? I don't have a clue. I don't even know where to start, how to start. I know that I want to put together care packages for a local hospital in memory of Gabriel, packages that would be given to the next parents who come in to deliver a baby with a terminal diagnosis...  Perhaps building a local support group, a place where other parents can get together to talk, vent, cry, and celebrate their tiny angels. I want to get involved. Do a walk for charity. Do something!  I just don't know what, how, when or where. I feel like there isn't enough awareness to pregnancy and infant/child loss... at least not in our area...

Tuesday, January 3, 2012

Autopsy results are in...

Just got off the phone with Dr Landers, she recieved the autopsy results today.

She said that Gabriel definitely didn't have any kidneys and the tubes that connect the kidneys to the bladder were also missing. She said they made note of the small chest, small underdeveloped bladder and some facial deformities (that I didn't notice - he was beautiful to me). They said something was different about his chin, ears and nose and also that his eyes resembled those of Down Syndrome, which is common for Potters Syndrome as well.  I will be honest, I had noticed his ears were different but I loved them. They were very low on his face and very large, and they appeared very "flat". 

The one thing in the autopsy that surprised me, the examiner found that Gabriel had excess spleens. Gabriel couldn't develop any kidneys, but he had developed more than his share of spleens!?!  He didn't get all the organs he needed but developed extra of the ones he had? Weird.

I forgot to ask if they put down an eye color on the autopsy... I'll probably just ask at my next appointment to see if they said anything about that. I want to know, its just something I've been curious about since I never got to see them.

Its nice to know that they didn't find anything concerning in the autopsy.  So now that we have all the test results back its nice to know that our risk of any future abnormalities is low. Its also very comforting to know that even if we had tried to take extreme measures to try to save him, it wouldn't have worked.

Baby Fever
Going through the greiving process after losing a baby, is like the worse case of baby  fever a person can imagine. I have a need to fill the hole in my heart, but also to fill these empty arms that are craving a baby in them. Its not to replace Gabriel, nothing could ever do that. Its just a want to fill part of a giant hole in my life.

I see babies, pregnant woman, and newborns and I can't help but get jealous and long for the gentle cries and coos of a newborn. I  wish we'd gotten to celebrate his birth, his first day, arriving home with him...

I just wish we'd gotten the chance to know Gabriel, to have him in our lives - a gentle, crying newborn... then maybe I wouldn't be experiencing such an extreme case of  "baby fever".

Sunday, January 1, 2012

The New Year

All I can say, is that I'm so glad 2011 is over and hoping 2012 will be a much better year.

2011 brought us joy, pain, heartache, sadness, happiness. It has tought us more things than I can ever explain, things about love, life and everything in between. It was a long, hard, trying year. We said hello, and we said good-bye to a baby we never had the chance to really know. We gave him every chance, every hope, and every prayer we could but it wasn't enough.

This week was a tough week for me, Derrick went back to work which meant that its on me to keep busy, keep my mind preoccupied and keep myself entertained. Sure having Evelyn helps, sometimes, but it sometimes just reminds me that we'll never get to see Gabriel in this stage, learning to talk, walking around and learning learning learning. Stupid things remind me that he's not here, sometimes its on the TV, sometimes its something as simple as a song on the radio or a commercial. Its always hard not to think about Gabriel for everything I see and do.  I think about what life would be like if he was here, how would Evelyn be with him and what would we be doing...

But I figured out what was the most hard for me this week... I realized, that I don't have to be strong ALL the time, its ok to cry and be weak at times. Its ok to be sad, to be angry and to feel lost... I was trying so hard to be strong and I've come to realize that I don't always have to be. I think because I felt so strong through the pregnancy, I just thought people expected me to be strong through the rest of the journey.  Its not healthy and its halting the healing process by avoiding the pain I feel deep inside. It was a battle that I've lost against myself and I've come to accept that, to accept the fact that I can't be strong all the time and I have to take the weak moments one at a time, handling each one separately.

The days seem to be getting easier now instead of harder. I don't feel like I'm fighting myself anymore.

This week though, ended with a hard day. A friend of mine (who I met through this experience) gave birth to her daughter who had anencephaly. It brought me back to the day we met Gabriel making Friday a very tough emotional day. But as the evening approached I was just so happy for her that she got to spend some quality time with her daughter before she passed, and I also began to appreciate Gabriel's impact on my life and the memories we have with him. Once I began to cherish these things I began feeling better and stronger and I was feeling so blessed by the end of the night.

Still taking each day a moment at a time...