Tuesday, August 10, 2010

Ava's story

I was having a normal healthy pregnancy. I had to go in for another ultrasound at 24 weeks because at my 20 week ultrasound Ava wouldn't show her face (She liked to be head down and face to my back) so they were trying to get her face again and the lady kept asking me if I had been sick or around cats or sick people. I said no and she got the doctor and he told me that Ava had Hydrops Fetalis, which is an end stage. (Meaning nothing you can do).

Hydrops is fluid in two places of the body. For Ava, the heart, lungs, and brain. It can be caused by the RH factor (very uncommon now), chromosomal, or a virus. We saw a specialist who saw extra blood flow in her brain, which is an indicator of anemia, and anemia is common in viruses. So he recommended that we go to the Pitt County Memorial Hospital and have a procedure called PUBS done (Blood transfusion to the baby through the umbilical cord via mom's belly). It was confirmed she had severe anemia and that the likely cause was Parvo. (caused by slap cheek aka fifths disease).

We were in and out of doctors for a few days. But then I began sever swelling (I had been swelling for at least a week, but it was getting worse) and gaining 9 lbs overnight in water weight. I was developing mirror syndrome which means I was copying what was happening to my daughter. It is like pre-eclampsia. My blood pressure went up to 13o's/70's. And I was +1 protein in my urine. When I got to +2 protein and had gained another 10 pounds of fluid and my blood pressure was 140's/80s I was admitted to the hospital and was told I would stay there until Ava's hydops was under control (Since they thought it viral that means it could run its course and leave us to continue a healthy pregnancy) I had another PUBS done and they xrayed me for fluid in my lungs, which I had some. My liver enzymes rose daily. On Sunday May 16th, I was having a great day. My BP went down and so did my liver enzymes. I had been leaking fluid the past few days, but my water wasnt broken. Sunday night I woke up and had a lot more fluid, my water had finally broken....at only 26 weeks.

Ava was given a 0% chance of living if delivered before 30 weeks. They had given me steriod shots 2 days before...but they were not hopeful. At this point I had gained 50 pounds in 2 weeks of water weight. I had more fluid in my lungs and when they administered meds to stop labor, my heart rate went erratic. I was put on oxygen and they told me that my life was now in danger. (Not because of the meds, it just happened at the same time) (They had kept telling me since I found out Ava had hydrops 2 weeks prior that my life was getting weaker, but now it was a fact.) Without an intact water and already 1-2 cm dialated, there wasnt anything they could do to give her another blood transfusion. Without that she would die, and I had maybe a week left myself. She needed at least 4 more weeks to have a chance to live, but that was impossible. My doctor came in asking if she could induce the labor, but I refused. (This was may 17th now) I didnt want to give up, I knew that she had a virus she was battling and that if I gave her time everything would be ok. But I kept deteriorating and my husband begged me to induce. I was told if the baby's heart rate dropped they would not do an emergency c-section. And that if my life was at risk and they had to do an emergency c-section I would probably lose the ability to have more children AND I would lose Ava anyway.

So at 5:25pm on May 17th I finally consented to induction. I had a folli bulb which hurts...Ava's heart rate never dropped during labor. They stopped monitoring near the end because they were so sure she wouldnt ilve. And didnt want me to lose it if I heard her heart stop. They checked every now and then, and it was such a relief to hear her heart. I felt, and still feel...like I failed her. I know her hydros was very severe, and she may still have never had time to get over the virus even if I hadnt induced...but I still wish I had risked my life to try to save hers...even if it wouldnt of worked. At least I would be with her, but that was selfish of me to want...my husband and family need me.

3:07am Tuesday May 18th (at exactly 26 weeks) my daughter was born alive and kicking. (but no crying) 3lb 7 oz (about a pound of fluid weight for her) 14 inches long. They immediatly started working to get a tube down her throat to help her breathe. They were able to get a tube in, they didnt think it would be possible.

At 6:30am I got to touch my daughter for the first time. She was so small and so beautiful for being so early. her features defined so well. I felt a lot of hope then.

I finally went to try to sleep (I hadnt slept in 3 days). At 11am they came and woke us up, telling us she was failing and we should go hold her and say goodbyes. We rushed up there and when we got there they were working on her to save her....I can talk about her birth but this part always makes me choke up because I can vividly see them all around her...the worst thing you can ever see. The doctor came and told us she was still alive, but barely and that she doesnt think they can keep her alive and even if they can...not for long. that she is just going to suffer and end up dying anyway. So my husband told them to stop, and I nodded....and they handed me her. She was so warm and so so so small. I just started crying. And I feel bad because even as I delivered her I was only saying "Im sorry Ava". And now as she was in my arms all I could do was cry. My husband and my mom held me and her together and we just felt her. I finally let my husband hold her, and we both saw (he felt) her last kicks. My brother held her when her heart finally stopped beating (that is when they can prounce the person dead, but she had stopped breathing over an hour prior)
At 1:13pm our little girl was an angel.

Later that day my blood tests came and the amniotic fluid both tested positive for Parvo. So I am thankful that this case of Hydrops cannot happen again to us. That is wasnt a genetic thing.
Sorry this was so long...I kinda just went back and remembered. Thanks if you read it.

Thursday, August 5, 2010

"Say Olin"

I found this poem in a book I am reading called "Say Olin To Say Goodbye" by Donald Hackett. It is about the death of his son Olin.
This poem really says everything I tried to say in my blog yesterday. As time moves on, others cannot help that they too move on. This loss wasn't directly yours, you hurt for me...but you cannot entirely understand the pain. But I thank everyone who has cried with me and still thinks of Ava. Please never stop saying her name to me. I do not cry because you have "hurt" me. I cry because you care and because I am healing. NEVER think that she has ceased to be of importance to me. She lives in my heart and everyday I think of her. Even when her siblings are born, she will be their big sister and I will still think of her....and you can still speak of her to me. Thank you.
If you don't know what to say...that is ok too. Like the poem says, I was in your shoes at one time. I understand. But don't say NOTHING because you think it will hurt. Just hearing how Ava has made you love your own children more makes me feel better. Telling me that everytime you see a butterfly or a star ora lightning bug to you it's her saying "hello".
Here is the poem.

"The time of concern is over.
No longer am I asked how my wife is doing.
Never is the name of our son mentioned to me.
A curtain descends.
The moment has passed.
A life slips from frequent recall.
There are exceptions: close and compassionate friends.
Sensitive and loving family.For most, the drama is over.
The spotlight is off.
Applause is silent.
But for me the play will never end.
The effects on me are timeless.
Say Olin to me.
On the stage of my life he has been both lead and supporting actor.
Do not tiptoe around the greatest event of my life.
Love does not die.
His name is written on my life.
The sound of his voice replays within my mind.
You feel he is dead.
I feel he is of the dead and still he lives.
He ghostwalks my soul, beckoning in future welcome.
You say he was my son.
I say he is.
Say Olin to me and say Olin again.
It hurts to bury his memory in silence.
What he was in flesh lies buried miles away.
What he is in spirit stirs within me always.
His of my past but he is part of my now.
He is my hope for the future.
You say not to remind me.
How little you understand I cannot forget.
I would not if I could.I understand you,
but feel pain in being forced to do so.I forgive you,
because you cannot know.
And I would forgive you anyway.
I accept how you see me,
But I understand that you see me not at all.
I strive not to judge you, for yesterday I was like you.
But I wish you could understand that I dwell both in flesh and spirit.
The mystery is that you do too, but know it not.
I do not ask you to walk this road.
The ascent is steep and the burden heavy.
I walk it not by choice.
I would rather walk with him in flesh,
Looking not to spirit roads beyond.
I am what I have to be.
What I have lost you cannot feel.
What I have gained you cannot see.
And I would not have you.
Say Olin for he is alive in me.
He and I will meet again, though in many ways we have never parted.
He and his life play light songs on my mind,
Sunrises and sunsets on my dreams.
He is real and shadow, was and is.
Say Olin to me and say Olin again.
He is my son and I love him as I always did.
Say Olin."

Tuesday, August 3, 2010


My friend Kayla is probably going to be shocked to see I finally posted a blog. I have been meaning to. But I never thought anyone would read it. And I have continued writing in the journal I was going to give Ava when she was older. But now that a few months have passed and the shock of our daughter's death has faded for many. I feel a lot more alone. Everyone gets to move on except for me and my family. We lost our future. And yet others seem to think that we will stop talking about her. I want to talk about her. But I feel like I am annoying people. I don't even know if anyone really reads my statuses on FB anymore. So I figured I'd write her and if anyone still cared about Ava then they could come read about how I am feeling. Instead of hiding me on FB because I might be ruining their happy day. Which I dont think is fair because I think if I have to read everyone elses happy posts about their babies/pregnancy then they can spare me some support in losing my daughter. If this had happened to a friend and not myself. Even if I had no idea on what to do or say. I would always listen and let them know that I havent stopped caring. I would attend the memorial service. So many of my friends I think are too insecure to come. Not sure what it will be like, what to say. Maybe afraid to cry. When I went to the support group last night I was afraid to cry. These were complete strangers. But like one of them said. It is easier to cry in front of strangers and not in front of those you know. These people poured their hearts to us about their loss. What they feel, what you thought wasn't normal, turns out to be very normal. Thomas told our story and everyone had a tissue. I cried for them and their losses, and even more touching they all cried for our loss.

Losing a child is the most horrible experience you can ever go through. I have been told so many times from those who have lost a child that "now you know that no matter what happens the rest of your life, it cant be as bad as this." And honestly, that is pretty true. I have experienced a lot in my life. And not having a dad around it just doesn't matter compare to losing your baby. I have never hurt this much. And it sucks because everyone is afraid of death....people are more likely to celebrate the good with you and know what to say...congrats...then a simple "Im sorry" when you loss someone. I myself am guilty of this. When my good friend Kathy lost her son, I didnt know what to say. I did say I was sorry. But then I never said anything else. And that hurts. The pain never leaves you and it hurts when you think everyone has forgotten the one you love. That they think you should be moving on by now. Let me tell you now...I will NEVER move on. I may have more children, but I lost my daughter. My first baby. I will always wonder what it would of been like had she lived. I will always look at my future children and wonder if Ava would of had the same color hair when she got older. You cannot expect me to just cry for her and then live my life. I will live, but I will always have a part of me in heaven and an innocence about life that is forever gone. Death is not scary. I guess if you never experienced losing someone you love, you just try to avoid it. Its NOT taboo. It is not something to just ignore.

Its not fair I lost my daughter, My selfish part knows this sucks, I wanted to have her in my arms always. But What I cant deal with is that she died and everyone seems to think she doesn't matter as much as a live baby on earth. That their baby is more important because he/she is alive and can be visably seen going through life, whereas my daughter is in Heaven and cant be seen. I plan to celebrate my daughters life for as long as I live. On her first birthday I will make her a cake. I will hang a stocking for her on Christmas. People thank God for the good in their life, and say let his will be done and how blessed they are...what about me? Am I therefore cursed because he took my daughter? Am I not blessed? I still thank God, even if I am hurting so bad. Because in my eyes. My daughter got to leave this evil earth and never face fear, sorrow, or danger. She is an angel and will forever be happy. Never know sadness. Is she not blessed because she isnt here on earth? She is just some sad story of a child who didnt get to live long? I dont think that is true. Her soul was so good and pure (all children are, but we lose that when we get older and have to find that innocence again)that God wanted her always to be happy with him in heaven. And one day when our souls are just as loving and good like hers. We too will be with him. I think she is very blessed. Our selfishness dont see it this way, because who doesnt want to watch their child grow? But sometimes God sends them only for a little while.

I am rambling. But I have so many thoughts locked in my head that I have held in for so long. Its hard to get them out in an order that can be understood.

I want to thank everyone who is going to celebrate Ava in August 28th. That means so much to me. I know so many of you still care and ache for our loss. But I try to stay positive that she is happy in heaven. Even if I am left here without her for now. I wish no one ever had to lose a child, but they are in a happy safe place. Its ok to cry and miss them. But try to stay positive that you will see them again and that they wouldn't want you to conitnue your life in darkness as you finish what your soul has to do here on earth to be with God.