Friday, April 30, 2010

It was the best of times, it was the worst of times...

The most frequent things I am asked are "why not terminate?" and "what if you find something with the others?"

Lets start with the first. Because this baby is a blessing from God. Every life is sacred and we should do what we can to protect it. I believe God gave me this baby for a reason, and I just need to discover why. Is it to teach me patience? I know I lack in that category sometimes. Being on full bed rest I have to have patience. I asked the Doc if things would have been different with 1, or even just 2 babies, he said most likely, but we will never know. I can't focus on that, but on what we have now.

The second...What if there is something wrong with them? I won't terminate for that either. What will it do to me emotionally...who knows, I will probably have a complete nervous breakdown. No, I can handle it. So far there is nothing showing wrong with them. Their heart beats are beautiful with all 4 chambers seen and their heads perfectly round with the skull intact. Livers are present, 2 perfectly shaped kidneys. The ultrasounds have been perfect, its not likely to find something now.
I'm dealing with knowing I will have a funeral shortly after birth for one. I live knowing its because of a birth defect that can be prevented in 99.9% of the cases. FOLIC ACID.
I will admit that I could better emotionally handle just about any other birth defect, as most of them don't result in death.

It all brings to mind Dickens...
It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair.

I questions myself. My ability to handle this. I'm 21. I'm pregnant. I'm going to give birth, followed by a funeral. How do you even start to plan for that?

I know I really need to stop reading things. I came across two articles tonight about babies born with anencephaly. One lived 3 yrs, one 18 months.
I ask myself if its really possible. The girl that lived 3 yrs, she was on a vent periodically and had a lot of respiratory problems. The other had a feeding tube and was on oxygen in her nose. They both had only a brain stem.
Do I want to hope, do we try, do we just wait and see?
I really don't know where to go. Hell, half the time lately I don't know which way is up.

Dear Asher,
how I wish you could talk to me, to tell me what I need to know, to tell me what you need.
Instead I try to make plans for you, for us, when there is a black curtain stopping me from seeing.
I know I have been unrealistic in some of my plans and ideas, but I hold a hope that there is a chance for us.
I live each day knowing that you won't be with us long, each day so far is a gift, and my one desire is to meet you alive. To hold and kiss you, to feel your sweet breath and the soft beat of your heart.
For now I have to content myself to seeing it on scans. You are so close to your sister its often hard to find just your heartbeat, they give up and just use an ultrasound. I don't mind this, as it gives me another chance to see you.
I love you

Thursday, April 29, 2010

Still in the hospital. Still having high blood pressure.
The babies are growing and growing well. I'm measuring near 28 wks., at 17.
17 wks, it doesn't seem like that far into it. Just 3 wks till I reach what is the halfway point of most pregnancies. It's hard to believe that I'm nearly there. July 12 is our first goal. 28 wks.
I feel them moving more and more, all over, though the last 2 days its been more in the upper left, Asher reminding me in my worst moments, that he is still here, still with us.
We have been working on a birth and care plan. There are a few things we want done, all realistic.

Some points in it:

  • Asher is not to receive any standard newborn treatments. No vaccinations, no eye ointment, no Vit. K. nothing. They are to wipe him down, wrap him up and put his hat on him, and hand him to his father immediately, he will bring him to me. This way if he is born alive we will have every moment possible with him.
  • The only time it will be permitted for him to be away from his mother is immediately after birth. We ask for a private room close to the delivery room where our priest can meet Asher(if its not appropriate for him to come in to the delivery room) and baptize him and do the Anointing of the sick(last rites). This is very important to me.
  • Asher will room in every moment he is alive.
  • We are to be left alone as much as possible except for family and friends we invite, this will insure we can be a family for however long is possible.
  • If he tolerates it, we want to feed him.
  • If he lives To the time I discharge we would like to consider the possibility of taking him home with hospice care, and allowing him to die there, hospice will be contacted prior to delivery(by parents) if Asher survives until delivery.
  • Asher is to have NO life support done with the exception of oxygen. We do not want his life artificially prolonged.
  • If something unexpected or out of the ordinary occurs we are to be notified immediately with all options presented to us and allowed to make the decision regarding what to do.
  • Asher is to be treated with respect and dignity at all times. He may not look normal, act normal, or be normal, but regardless, he is a baby who is loved by his family.
  • This plan pertains to Asher. The other two are expected to have no problems and we expect every life saving measure to be taken.

We haven't decided yet if we will have the other babies with us. It's possible, or we may leave them in the nursery, thats all assuming they won't need the NICU, if they need the NICU then its not a decision we will have to make. There will be no need for him to have shots or anything like that, so why bother, its a few minutes less of his life that we will have with him. Feeding, thats the one most people question. Because of his lack of brain he won't feel hunger or thirst. Some people believe feeding anencephalic babies prolongs their life, others don't. I don't know either way. I know feeding is a normal newborn activity, and its something we can do for him. I was told if I want, I can even try to breastfeed him. I'm not sure yet what I will do. Mike and I plan to finish the care plan and give copies to the doctors and nurses involved ahead of time. I want them to know us, and know what we want. We will add at the end that we know things can change and we can be flexible.

Sunday, April 25, 2010

BP was 180/114 this morning. I went to the ER for a migraine and they found that. Question is, headache because of the BP or, BP because of headache.
They got it down to 140/90 and admitted me. Its hanging out in that range today. They admitted me to keep an eye on me for the day and for tonight.
I slept a few hours. Still tired though.
Had an ultrasound this morning and they all look ok. every couple hours they hook me up to the fetal monitor for 15 mins or so. The only issue is they can only get two of the babies. Asher being located primarily behind his sister is hard to find. But he is ok, according to ultrasound.
Mike, mom, and dad brought Chinese for dinner tonight. They didn't stay long though because I am tired and dad is going home in the morning. Mike brought me my laptop, and I do have wifi, just don't feel like doing much more than playing solitaire and watching movies.

Saturday, April 24, 2010

Now that my emotions have stabilized a bit from earlier this week I can think rationally. OK, I admit, I still break down in tears at random moments, but I'm not crying constantly like I did before.
Mike wants me to measure my belly around. Not gonna happen. I don't need to know how big around I am that way.
The babies are very active lately. I feel significant movement in three separate areas, lower left and right, upper left. Thing one and Thing two are lower, girl is bottom left, boy lower right, and Asher is upper left. At times i think Asher is the most active.
Just over 3 wks till I reach the halfway point of 20 wks. The hospital considers age of viability 23 wks. which means before that point they won't try to save them. At 24 wks survival is 50% . At 28 wks its 90%. July 12th is our goal. Thats when Fetus McJitters and Company will be 28 wks.

Its early and I'm the only one up. I love having the quiet. I woke up when Hannah jumped on my belly getting out of bed, after Mike hollered at her to get out because she was all in our faces. I love this dog, but damn she is energetic and has come to think 630 am is wake up time.

Thursday, April 22, 2010

What do you do when they tell you one of your triplets won't live? How do you react? What do you say when they tell you your son has just a brain stem?
I admit, my first thought was excuse me doc, but men don't have brains anyway.
Anencephaly. Absence of the brain and part of the skull. A neural tube defect, of which most are preventable with folic acid supplements. So why does our son have this? I took my supplements. I took extra folic acid. But Asher still has this.
Because of my high risk status I see the OB weekly. He does a quick ultrasound in the clinic to check the heartbeats, it's easier than listening and trying to figure out which one is which. At my 15 wk apt he got the best look yet at baby 3. He sent us for a real ultrasound at Benefis. He was there, a perinatologist/OB(Dr. B) who is taking over my care, a neonatologist(Dr. D)that will take care of the babies after birth, and a nurse from the birth center.
There they found we are having 2 boys and a girl, and that one of the boys has anencephaly. Asher Quinn is his name. We felt he needed a name now. The back of his skull failed to form, and he only has a brain stem.
He is alive now, and may be born alive, I hope with all my heart he is.
How do you react when someone asks how you are doing? I don't know how to react. I don't know what to say. or do. I think no one really wants to hear, so I just say I'm ok, When in reality my days and nights are filled with tears, and pretending things are ok when others are around.
I feel like the sky has fallen on me. And the world will never be the same again.

Dear Asher,
The day I found out about you my heart sang. We had recently been told that there were only two of you, and the third hadn't made it. But then there you were, hiding behind your sister. I don't think I stopped smiling for several days.
I admit to being scared at having three babies depending on me for life, but knowing these are to be our only children, I was thrilled.
You were wanted and loved from the start, and you will be to the end.