Celebrating Life 6/2/14

My last Celebrating Life post was so much more full of hope! This one, not so much. I find myself wrestling with much. 

I am wrestling with the stark difference between the last due date and this one. I had hope because I felt that it was all redeemed and made whole. I had hope because there was new life! This due date, I am slightly baffled and extremely sad about the circumstances that have made their way into our home. I'm giving it my all to celebrate what was, but it's not nearly as joyful.

Tomorrow I celebrate Baby B#2, and reflect on what he/she would have been, what he/she would have looked liked. I choose to thank the Lord that He is caring for him/her. 

I almost feel guilty that I don't have much more to say. You see, the things I have been wrestling with act as a barrier, or as my pastor put it today, a pair of dead batteries. I'm running on empty. I've hit a road block and I keep barging into it thinking just maybe I'll break through. 

Today during worship we sang a song that goes a little like this:

Freedom reigns in this place,

showers of mercy and grace,

they are falling on every face,

there is freedom. 

During this song it was said that in Christ we are free from our pain, free from our sorrow and worries of this world. I have never really struggled with believing that statement before. But the heaviness of losing 3 babes in just under a year makes me wonder how do I operate in that freedom? How do I successfully battle the ideas that I am being punished, or perhaps unfavored by the Almighty? How do I just toss out my pain and walk in that freedom, what does it even look like? I've even gone as far as to feeling hated by the one who made me.... Where do I find this freedom, because I've certainly cried out more times that I can count to take this burden or at the very least take the pain that seems to sink right into the bottom of my lungs. 

Silence.

At first I felt like maybe the silence was because He was working on something, but then it stayed quiet. So, then I decided I should pray more and listen harder, but then it stayed quiet. So now I am left baffled and stranded in my own head, and it's silent. Like everything has been turned off. 

Knock, knock... Lord, are you there?

I find myself marching along with mostly dead batteries determined to find the Life source to get plugged into. It's a straight up battle, and one I am not afraid to fight, as I've fought this battle before. This time, I am just a little more weak, I'm a little more tired, and this time the fight in me longs for freedom more than I have ever needed it before. I can only think of one song that could be my anthem... 

This is my prayer in the desert

When all that's within me feels dry

This is my prayer in my hunger and need

My God is the God who provides

And this is my prayer in the fire

In weakness or trial or pain

There is a faith proved of more worth than gold

So refine me Lord through the flame

I will bring praise, I will bring praise

No weapon formed against me shall remain

I will rejoice, I will declare

God is my victory and He is here

This is my prayer in the battle

When triumph is still on its way

I am a conqueror and co-heir with Christ

So firm on His promise I'll stand

I will bring praise, I will bring praise

No weapon formed against me shall remain

I will rejoice, I will declare

God is my victory and He is here

All of my life, in every season

You are still God

I have a reason to sing

I have a reason to worship

When I don't feel like it, I sing. When I don't know what else to do, I keep marching forward. I rejoice even when it takes every ounce of energy I have. He is still God, and I trust that He is still good, even when I don't see it, even when I don't feel it. 

Colton James Brooks

As many of you have seen on Facebook or Instagram, my husband and I were lucky enough to get the genetics back on our 3rd little one.

Baby Brooks #3 was Male with a condition called Triploid Syndrome. Triploid syndrome is extremely rare and happens in only about 1-2% of pregnancies. I am extremely thankful that this is a condition that is not hereditary or in any part because of me or my husbands genetic make up. If you happened to google it, or clicked on the link and find anything out, you would see that the majority of the time the circumstance is 2 sperm (nice work babe on the super swimmers) joined with one egg. Every human typically takes 23 genes that come from Mom and 23 that come from Dad. Resulting in 46 total. In triploidy the baby takes on 69! That's 3 whole sets of chromosomes! 

Triploidy causes a huge giant laundry list of complications such as cardiovascular, gastrointestinal, and neurological issues. Just to name a few. More times than not the baby doesn't just house one issue, it's typically multiple issues. All incompatible with life.

In one article I read it was said that it's a 1/15000 chance that a woman reaches past the 15th week of pregnancy with a baby that has triploidy, and most often the egg never implants or the woman miscarries before even realizing she is pregnant. There has been only one documented case of an infant making it to 10.5 months of age.

Yesterday happened to be a rather emotional day. I thought that I would feel 1000 times better once I knew the gender and what had happened. Instead, I hung up the phone and burst into tears. Full of gratitude and sorrow all over again.

A little boy!

It was very surreal. However, as I consulted with Dr Google, once again, I found article after article about this syndrome, I felt empowered with knowledge. Later that night as I crawled into bed talking about the results with C, we had both felt so much peace about the timing of our miscarriage. I wouldn't ever wish to have another, or wish it upon anyone else, but I was so thankful that our baby didn't have to live in pain, or with disease. Sounds a little morbid, but is there even a better way to reach heaven? Straight from the comfort, warmth and security of my body to Jesus' arms?

After much consideration C and I decided to name this little one. I am privileged to say that I have a son in heaven.

My boy, Colton James Brooks.

We hadn't ever felt the need for healing or closure after the other two, but this one... It's different. So in loving memory of all our little ones we made a box to place all our keep sakes (ultrasound pictures, tests, letters, notes from friends and family, etc..).

 

 

 

Sounds crazy but I am so in love with my little ones, and so in love with our boy. I actually feel proud and a sense of being a mommy to a boy. I wonder if this compares at all to what it's like to be proud of your living children? If it is, I like it. I took that little box with my from room to room last night. And it will probably travel around the home for a while until we decide on a special place for it.

 

On another note, in my previous post (MTHFR) I mentioned about some results I received. There was some questions I had about this specific mutation and when my Doctor called yesterday I was about to have a nice long chat with her again. Changes have asterisk next to them.

 

Karyotype - Normal ( I am happy to know that I am genetically sound, *Hubby no longer needs to have his done, unless we have another miscarriage.)
All Autoimmunity disorders - Normal
Lupus - Negative
Thyroid - *Low indicating possible hyperthyroidism, getting second opinion
Prothrombin - Normal
Antithrombim - Normal
Antibody tests - *Normal / Some Not Tested yet

 

Vit D - Normal
Factor V - Normal

Factor II - Normal

Some type of active diabetes tests - Normal
Blood clotting disorders - Normal

Homocyseine - *Not tested

Protein S - *Not Tested yet

Protein C - *Not Tested yet
Prolactin - *Not yet tested

 

MTHFR - **Compound Heterozygous MTHFR (click the title for more information on this specific type) - She also mentioned that I was also a double carrier. which I don't know if that means something else as well as..or if it's one in the same? So many questions!

 

 

So, really I still have a lot of questions but honestly most of them have been answered. I am getting a second opinion on everything just to have a second set of eyes. However, because the genetics on baby we now know for certain that this loss was NOT because of the MTHFR. This doesn't mean that our other natural miscarriage wasn't due to MTHFR though. And this does give us more information in case I need to be treated in the future. This might depend on the tests that have not yet been tested. Which brings me to the next point, because we received news on the genetics of Colton, she no longer thinks it's necessary to complete my RPL panel. Which I understand her reasoning, however, I would like them completed for my sake and why stop when we're almost done, right?! Plus I think it will give us some valuable information. I am glad I am getting a second opinion, I know this will reassure me that all will be well next go around.

 

I was starting to get really frustrated with my Doctor and the answers, or lack there of, she was providing. I finally told her that I was an information person. I wasn't trying to be difficult and I certainly am not saying that she isn't worthy of being trusted. However, I feel like she just doesn't have much experience with my particular type of situation. Once I told her that I really appreciated her taking the time out of her day to call me and explain things and answer my questions because it was incredibly healing (emotionally) for me, her whole attitude changed. She was much more nice and understanding of my need for information. I don't need it because of my lack of faith, and I don't need it to prove God wrong, or prove Him right. I needed it so that I could process the way I process to gain emotional healing. She was much more inclined to discuss things with me once I made it clear that I am not set out to challenge her. Just learning to advocate for myself, that's all.

 

So all in all I think we have a good start on the medical side of things. I am sure as life moves forward we will have to have trials and errors on how to proceed, but for now, I am very satisfied with how things are turning out. I think  I am starting to accept that there is always the possibility of complications of any kind, but God is bigger and will make a way when it's time. Perhaps now I can and will blog about an array of other things now...

 

Blind Faith. Trust through the unknown.