Thursday, April 30, 2009

It wasn't supposed to be this way

"All things work together for good, to those that love God" -Romans 8:28

That verse is hanging on the wall in my house, every time you go down the stairs you see it. Such a powerful verse, it's something that you have to hold onto even when you so badly want to question, "Now how can that be in my situation?"

It's not supposed to be this way. This isn't at all how I planned this out. I should be done with Vayden's room, a Jungle Book theme, I should be watching A Baby Story being excited for all these other mommies. I chose a midwife this time around because I wanted to try to at least feel one real contraction, I should be watching "The Business of Being Born" over and over again, preparing myself physically and mentally to have a drug free birth. If this pregnancy were normal I would be online purchasing Vashon's "I'm the BIG BROTHER" t-shirt and Van's #1 DAD shirt. My diaper n wipe shower would be soon coming up, and I would stay on line in chat rooms like Cafemom or Babyfit, talking to other mommies due in June about all the things we love and hate about pregnancy.

Instead the room that is next to Vashon's is now ready for guest that come to our home. I stay away from TLC and the Discovery Health channel. I will have a medicated and induced birth because I don't want to be too tired to spend time with Vayden and I would like for him to meet his grandmothers. No T-shirts are being ordered and the only showers I've been seeing are the April showers that bring May flowers. I don't go on the chat rooms very often, and my view on the joys and pitfalls of pregnancy have changed. I no longer think it totally sucks to not be able to eat sushi or have a beer. I feel like every hard moment is just a blessing towards your next blessing the baby itself. However I feel all the pains and pitfalls of pregnancy I also emotionally deal with so much more.

Yesterday we met with the Chaplain on base. It was our first appointment to get us on a spiritual pathway together as a couple as things begin to rock our world. I have in this last week became very angry and emotional. I can not pin point or target where my anger is coming from or whom it's directed to, but I'm angry. We were told to walk not run through this Valley of Death and that it's OK to question God, however God doesn't have to answer all the time. He spoke of the story of Job, how he basically lost everything except his love for God, and how in the end, all things worked together for good. Even after reading that story in the Bible, I can not seem to wrap my whole heart around this being good in any form.

Where is the good in a marriage that is being tested so hard that you feel it may be torn apart?
Where is the good in being afraid to try to have another one?
Where is the good in the friends I've lost due to this taboo topic?
What is good about no sleep?
What is good about crying all the time?
What is good about a condition that we can't even fight with research? This is a fluke, it just happens, How can I be of any help to anyone else with this when the outcomes are random. Sometimes you get through it sometimes you don't. It's all luck, because Vayden's was caught early enough, I had a good medical team, I went in for intervention..........yet still.

I'm not angry at God. Like I said before I don't know why or who my anger is directed to, it could be my lack of sleep or that time is quickly coming and as much as I want to hold my baby I have to be prepared to let him go if called to heaven. That is a bittersweet want; or maybe this anger is Fear of the unknown and of what I can not control. I keep reminding myself that God is crying with me, he hurts like I hurt, so I really don't think I'm angry with him. Although the creator of all I'm aware that these negatives in life are a direct result of living in a world of sin. I just keep praying he pull me from this anger and bring me back to that state of peace.

I just keep thinking is, it wasn't supposed to be this way.

Tuesday, April 21, 2009

You Are My Sunshine

Today my husband and I met with our palliative care rep and the neo natologist that will be working on Vayden’s induction date. We had a few questions as to what was medically available for him post birth and wanted to get her stand point on our choice to select comfort care vs. invasive care. I feel that in order to get the best care possible the Dr. needs to be on the same page with the patient. She is completely on board with us and actually praises us for the brave choice we’ve made.

This appointment did get me teary eyed, as she prepared us for how Vayden may look appearance wise and what to be prepared for post delivery, although such a sweet woman she constantly attached his name with phrases like “will pass shortly” or “these numbers don’t good”. She gave us a realistic outcome but also knew of our faith, so she gave us all the outcomes, both good and bad. Some that I was not even aware were possible. I was surprised to see how she made this situation not only about me but she also included Van. To his surprise he was told that he would be helping her out while she did the quick assessment on Vayden and how she felt that was necessary for the father to make memories. She was also very compassionate and understanding that in many cases things like this don’t truly hit the father until the baby is born, and she only expects him to be a tiny bit stronger than me, however she mentioned that in many cases the father turns into the complete wreck.

We were asked if we wanted to tour the NICU, we declined. We feel that if Vayden is meant to stay with us he will not even need to visit that side of the hospital. Not to mention no matter who’s child it is, the NICU is not always a pretty place. Special cases like ours deliver in special rooms with special pictures on the doors. The labor and delivery unit is separated by two sides, the joyful mommies to be and excited guest in the waiting room side, and the high-risk side. Even on today’s tour I could tell the difference. Less baby portraits hanging on the walls, the nurses stationed seemed quieter, and our palliative care nurse was well known, so sad eyes of sorrow hit us as they welcomed Debbie back again. It was like they knew why she was there with us and they knew our case was special aka high-risk.

My sleep is now being interrupted; two nights ago I had my first dream about Vayden’s birth. I’ve tried to daydream the birth out but have never gotten far, that night I had to fight my own self to wake up. This dream did not end good and we did loose Vayden, but what woke me up and kept me up the rest of the night was how fast it all happened, and how although I saw my precious sweet baby I didn’t pay close attention to him. In the dream Vayden was a standard baby outline, yet had a glowing gold color, I suppose how you would picture an angel. Once I was awake I was un able to go back to sleep and I cried and cried downstairs. Last night was not easy on falling asleep as I laid in bed wondering if I should ask for some type of sleep aid to make it through these next 6 wks.
Before my appointment today I was upstairs curling my hair and started humming the tune, “you are my sunshine”. It made me think of Vayden, so I quickly spoke the lyrics to the song…then got to “you’ll never know dear how much I love you, please don’t take my sunshine away”. A tear came to my eye as I said to myself this is the song I will now sing to Vayden everyday and when I deliver him

Thursday, April 16, 2009

When it hits. It hits hard.

I knew it. I was too cool yesterday. Someone who didn't know me, said my sons name attached with "is more than likely to pass shortly after birth." When the perinatalogist would refer to Vayden he would call him "the baby". But now he is no longer "the baby" he's Vayden. I hate bladder obstructions, to hear the term a fluke will always bug me. In my life I thought a fluke would be hitting a million dollar jackpot and only using 2 quarters. That is really not the case.

Do things like this make you think about what you once considered to be unfair in life? Vashon was born with a moderate case of eczema, the worst part was that it was on his face. I recall crying and crying at night over this. Upset and angry wondering why my baby boy had to have this condition, yet we found a cream that actually worked in the flare ups and he grew out of it by age one. As silly as I feel about my passion for fixing his eczema I can relate to the core of my tears and anger. My child was in pain, and I couldn't do anything to fix it. Mothers and Fathers of even adult children know how bad that feeling is, flash backing on my 1 yr battle with eczema makes me even more at peace with our choice to select comfort care for Vayden.

This is all still so un real. It's like no matter how many needles in the belly, how many u/s sounds in different rooms at different offices I still sometimes feel like it's not my son it's their machines. Not that I've been taking it lightly, but I can guess that if I didn't have access to the internet or wasn't computer savvy, I would probably be on planet Care Bear. I'm grateful for the knowledge I searched for every night for months. I can't express the thankfulness I have for the other PUV or LUTO families who have lost. Still sometimes I wish I could be like my dad and not be able to use the FLASH button on the phone correctly. (sorry dad) The truth is, it makes things more simple, sure you don't know too much but you also don't hurt as much. I know this for a fact because my father is sick from something I can not even tell you the name of. The question isn't do I not know? the question is do I want to know? The answer is No. I know the basics and what not but I stay away from the text book side and the statistics, etc. He is my daddy and I love him, what more do I really need to know.
I wonder still sometimes why I didn't take that same pathway with Vayden's condition. I don't regret grabbing all the knowledge I took in and I also don't regret staying away from the text books in terms of my father. Every now and then I think would my days be easier if I didn't know as much as I know.

Well like I said in the post below I was sure this would hit me today and it has.

I'm still praying for you Vayden

Wednesday, April 15, 2009

7 weeks......

Hello all, we're back with more info and further updates. My family and I took a 2 week vacation to California and Las Vegas, NV. It was wonderful, greatly needed and we had a blast. We also managed to make some wonderful memories with Vayden which are discussed in the blog post below.

Now it's back to reality, Tick Tock, Tick Tock. We've schedule a date to induce June 5, 2009, that leaves me with 7 weeks hopefully, as we all know babies sick or healthy come when they want to. However I'm hoping my lil guy will stay in the oven that long, the planner in me must have everything ready and everyone here, but like any planned BIG day, something can always go wrong. ( I will be 37 wks that day)

Today my husband and I met with comfort care rep, I was preparing myself for an appointment filled with tears and many "I don't know" answers to her questions. However it was not the case. As lil as I've spoken to my spouse about all this his plan is very much the same as mine. We did hit some dead ends which now I see what needs to be talked about, but all in all we both have the same idea of what we want for Vayden. We both understand his condition and his life expectancy and we're both afraid of the unknown.

I am aware that it's not over until it's over, but like I've said before I'm also aware of the reality of this condition. I've been very clear in my prayers as to what I want and believe that my request will be granted in one of two forms. I am at peace with knowing that God in fact did listen to all of you and will answer our prayers. I must ask that you please be at peace with that also. With 7 weeks left I find that I need to get my behind into gear and get as much done as I can so that I can focus as much time on Vayden when he's born.

Our birth plan is very simple and straight forward. I will deliver vaginally with the use of an epidural so I'm alert and not too tired. Vayden will be immediately placed on my chest for kangaroo care and time with him while he's still attached to the cord and the placenta to me. That will give us a few extra mins with Vayden if born alive, since my placenta is his current life support. We plan to decline any breathing support other than oxygen, but we are going to speak to the neo natalogist next week to see what options are out there and what he thinks would be best. Van is at odds with cutting the cord, on one side it's a bonding memory & at the other side he feels it's him cutting Vayden's life off. We plan to just play it by ear and I hope the lord speaks to him as to what is best at that time. We were told what we're able to do and have and we plan to roll with the punches as we can never set anything in stone until he's born. I plan to take a list of all those things offered for care and memory keepsakes, in the stress of the moment I tend to forget many things. With that list I will have choices of everything available then we can choose what we really want at the time.

I feel a bit numb right now. I think I over prepared myself for this appointment that I knew every single thing they were going to talk about. Hearing someone else say Vayden's name attached with "if born still" or "will soon pass" was like hearing "what time is it?" It will most likely hit me tomorrow and I will cry my eyes out as I replay the conversation today and begin to make plans and get things together. 7 weeks can go by so fast, in my case I hope it takes it's precious time.

As my prayer request is still the same I've added one additional request. TIME. I suppose I can say I'm ok with letting him go home to be with God if needed. Although I still want the chance to meet him alive even if only for a short while. So if you all could continue to stand in agreement in prayer with me for a total and complete healing along with TIME, I would greatly appreciate it. Vayden baby please keep fighting for 7 more weeks until we meet you sweetheart.