Tuesday, December 30, 2008

Not such a good day

Well the day started out good enough but I knew I had to get something done. So later in the afternoon at work when nothing was going on I called to inquire about pre-arrangements for Carleigh's funeral. The first one I called was Fisher & Edgington Funeral Home. I talked to a guy named Brian, who I guess is the funeral director, and he was very nice on the phone. I asked him if they did pre-arrangements for funerals and he said they did and he asked if it was for me. I said no it was for my daughter and you could tell he was sympathetic. He asked what her name was and I told him Carleigh. He then asked about her social security number and I said well.....she hasn't been born yet. He said several times that he was sorry and I could tell he meant it. We made an appointment for Monday, Jan 5 @ 6:15 pm that way Anthony would be able to go. I called the other funeral home in town and they weren't very friendly on the phone. Luckily, the person said that the person who makes the pre-arrangements wasn't there right now and they asked to take my number but I said I'd call back later. I have no intention of calling them back. I did not feel comfortable on the phone w/ them at all and I feel that I have made the right choice of a funeral home.

I was ok for a little bit until I tried to call Anthony and he didn't answer. Then I just started crying. I knew this was going to happen at some point but I guess that now that we actually have an appointment to start planning it's becoming more real. I texted Lindsey that I needed her for a hug. (She was in a different room pumping.) So Lindsey, being such a great friend, tidied herself up to come console me. I probably should've went home since I wasn't ok but it was Dr. Conti's retirement party and I wanted to be there at least for a little bit for it. I'm sure it was pretty obvious to everyone that I was upset and had been crying. I'm guessing the red, swollen eyes probably gave it away. I was ok in the break room til Cathie came up and hugged me and such. That just made me start crying again. I managed to stick it out the rest of the day and now that it's right before bed I'm doing a little better.

A lot of people don't know what to say to me. I can tell. I think people are afraid to mention anything. I don't know if they think they'll upset me and I'll get emotional or what they are thinking. I can understand not knowing what to say b/c I would prolly be the same if the situation had been reversed. What do you say to a woman whose child is destined to die? On the other hand I find it annoying at times that the subject is avoided. If you ignore the situation that doesn't make it go away. Sometimes I do want to talk about it and other times I want to be left alone w/ my feelings. The most difficult thing is that people really don't understand what I am going through. I guess you only really know if you've been in a situation like this. And I have met and talked to several women who have lost their babies not long after birth. I would have to say they have been the most helpful to me.

On another note, on Monday I met with Kathy, who is the manager of Mother Baby Care and told her about my situation. We talked a little bit and she gave me the number for one of the nurses, Monica, who has had training for cases like this. She was going to inform her about my me and whatnot. So next week, I will be calling her to meet with her and probably go over Carleigh's birth plan. This will give her time to get info and such together and also time for me to try and complete Carleigh's birth plan. I've already started on it and I would say it is mostly done. I found a good template on the internet so that has really helped.

I've also been trying to do as much research as I possibly can so that I can be well-informed about anencephaly. Reading facts and statistics help but also the stories of other families who have gone through the same thing. The stories are pretty much a guarantee that I will cry but I've learned probably the most so far from these. I want to have knowledge to make good decision for my daughter. You know what they say....knowledge is power.

Monday, December 29, 2008

Back from vacation

We got back from Hawaii yesterday evening. My family had a good time. The Big Island was really neat but it's not my favorite island and I'd prolly choose one of the other islands over it. Definitely lots of old lava flows! There's not a lot of good beaches there b/c of the lava. We only went to the beach once and I only got in up to my waist. Kyndra really liked swimming in the ocean. She got in the pool at our condo too but the pool was so cold she could only stay in for a few minutes b/f she started shivering. I'm sure she would've tried to stay in longer too if she could talk!

We did a lot of driving around the island b/c we rented cars so we didn't go on a lot of tours. We did go on a whale watching tour. On that we were able to see humpback whales and even one of the first calves of the season. We didn't get to see any of the whales breach so that was a bummer. We saw spinner and bottlenose dolphins too. We also did a luau on Christmas. We had to have the luau inside though b/c it had rained up to that point and they wanted to be on the safe side.

One day we spend totally on the volcanoes. That day was nice til we got up in the mountains and then it was cold and rainy but it eventually blew over and got a lil nicer. We trekked around the volcanoes park and saw a few sights. Kilaeua didn't have any active flows the time we were there so we didn't get to see any of the red hot lava.

I did get a piece of jewelry while I was there. I got it at Maui Divers and it's a diamond ring. I got it for 60% off so it was a good deal. The last time I got a coral ring and pearl earrings and a necklace so I didn't really have a real desire to get any of those this time around.

Overall our vacation was a great time. A good distraction from reality.

Right before we left for vacation in the hotel room Anthony told Hannah, my step-daughter, about Carleigh's prognosis. I think she was a little confused and upset. Later before we got on the plane she asked me more about it. I told her that Carleigh's head didn't grow right so she won't be able to live long once she's born because of that. It seemed to help her understand a little more. She'll still rub my tummy and kiss it. It doesn't matter to her. Carleigh is still her sister.

Thursday, December 18, 2008

I Will Carry You

There is a song that I found that I absolutely fell in love with. It was written for Audrey Caroline. You can listen to it also on youtube. Whenever I hear this song it makes me cry. It's so perfect.

I Will Carry You

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?

People say that I am brave but I'm not
Truth is I'm barely hanging on
But there's a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who's chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says...

I've shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One Who's chosen Me
To carry you

Wednesday, December 17, 2008

Maternal Fetal Specialist

This afternoon at 3:15pm I went to the Maternal Fetal specialist, which in my opinion, was a big waste of time. But I understand it is necessary for Dr. F to have the 2nd opinion. We didn't learn anything we didn't already know. They'll send all their reports and whatnot to Dr. F.

I got there and filled out paperwork. I got my US next. Funny thing, the tech there did training at the CMH and she asked who did my US and I told her Beth and she remembered her and Dr. H too. Anyway, she finished up and then got the dr so he could look around too. The dr (can't remember name) was nice but I was annoyed at the fact that he seemed to think termination was the best thing and he made it known. Being the nice person I am I kept my mouth shut. Nothing he says is going to change my mind. Next we went and saw the genetic counselor. She just went over medical and family history and talked a little about anencephaly. So the rest of my appts will be spent w/ Dr. F and I am glad.

Anthony has mentioned to me about inducing around 30 wks but I just can't do that. I only have 4 more months to be w/ my daughter and I intend to have as much as that time as possible. I will talk w/ Dr. F our next appt and ask her what she thinks would be a good time to induce b/c I will have to be induced since more than likely she will not come on her own.

A burden has been lifted off of our shoulders. My parents are paying for Carleigh's funeral expenses. It's something my dad really wants to do for us and we are really grateful.

So many things to think about, to plan, and to do. It'll all start once we're back from our trip. So we will try our best to get all the rest and relaxation that we need in.

Tuesday, December 16, 2008

The Day After

Well, today is the day after.....I did not sleep well last night. I kept thinking about Carleigh. We've got to make decisions about her birth. We've got to plan her funeral. We shouldn't have to think about things like this.

My mom came down around noon today. My dad drove her down here. He stayed and visited for a little bit and then took Coalee and went back home. He took Coalee to board him at Boutwell's while we're on our trip.

I got a package in the mail today. It is the prefolds (cloth diapers) I ordered for Kyndra and Carleigh. This completed all the diapers I would need for Carleigh and now I won't be able to use a single one.

I got a call from Dr. F's office today regarding my referral to a specialist. I have an appt tomorrow afternoon w/ a Maternal Fetal Medicine specialist in the Dayton area. I will be having a level 2 US, meeting w/ the specialist, and possibly seeing the genetics counselor too. I am hoping that everyone is nice, caring, and understanding. I don't want to be questioned about my decision to continue to carry Carleigh. I don't want to be told that termination would be better. I have no problem walking out if they don't support our decision. The office said they were faxing over all of my records so I'm hoping they realize that we are serious in our decision.

I bought 2 books today off of Amazon. One is
"We Were Gonna Have a Baby, But We Had an Angel Instead" and it is a children's book. The other is "Waiting With Gabriel: A Story of Cherishing a Baby's Brief Life" and it is a book that I have been wanting to read for a long time now, even before this happened to us. It just seems more important to read now.

I don't want to do this. I don't want my baby to die. I feel though that Carleigh was meant for me. God knew he was sending her to a mommy that would take good care of her and love her no matter what. I do believe too that God has been preparing me for this and I am glad. Please continue to pray for us and for Carleigh. I know God can work a miracle and as much as I hope for that I will accept whatever He chooses for us.

Monday, December 15, 2008

Our World Came Crashing Down

Today I had my midway US. I am 21 1/2 weeks and was looking forward to this US. Who doesn't love seeing their baby on the US screen!? Everything seemed to go fine at the time but looking back I realize that things were a little off. Beth was the tech that did my scan and she wasn't real talkative during the scan, which Lindsey and I assumed was because they had a busy day. Also, I realize now she never got any measurements of the brain. A few other things too....

I left work at 1:30pm and picked up Kyndra from the sitter's house and went home. As soon as I walked into the door the phone was ringing and it was Dr. F's office. I knew something must be up. I answered and Dr. F was on the phone. She said she needed for me to come and see her so we could talk. Dr. H saw something on the US that was concerning. It didn't matter what time I could come in she needed to see me today. So I called Anthony to see if he could get off of work to go with me and then I called the office back to tell them I was getting things around and on my way.

I called Lindsey to see if she had left work and she had. I was going to have her look up the US report for me to see what it said. She told me to call her when the appt was over because she was concerned too. I got to the hospital around 3pm but Anthony was still a few minutes away so I went to my dept and being nosy I looked up the US report. All I had to see was the word 'anencephalic' and my world came crashing down. Jimmy, one of my coworkers, could see I was upset and asked what was wrong. I told him my baby had no brain and that I couldn't deal with this and I left the control room. I had one of the front office girls hold Kyndra and I used the restroom and then went up to Dr. F's office.

Anthony got there not long after but I didn't tell him what I already knew but I wanted to get the final word from Dr. F since I didn't read anything else on the report. I got my weight, BP, and pulse. BP was definitely elevated and my pulse felt like it was racing. Anthony and I sat in the room and waited for Dr. F. I imagine she waited til all the patients were out of the office to come in. She soon confirmed my worst fears. My baby, my Carleigh has anencephaly. Basically, my little girl has no brain and no skull cavity. I broke down. This is not supposed to happen to me. This always happens to someone else. I knew there was no hope of my baby girl ever living longer than a few hours or even days. We will have to bury our daughter not long after she is born.

Dr. F told us our options. To me there is no other choice than to carry her to term and spend as much time with her as possible. I CANNOT and WILL NOT terminate this pregnancy or the life of my little girl. I told Dr. F I would continue with the pregnancy and she respected my decision. Dr. F is referring us to a maternal fetal specialist and possibly also a genetics counselor. She says this prolly happened for no reason at all. I was on enough folic acid and there is no family history. In any future pregnancies though I will be on extra folic acid to try and help prevent this. Of course future pregnancies is hard to think about right now.

Dr. F asked if we wanted to speak with Dr. H and go over the US and of course I wanted to. So we headed there next. He went over the US with us and showed us exactly where the anencephaly was and what a normal US looked like. I already knew but I knew it'd be more helpful for Anthony. Dr. H said he didn't know how Beth could get through the US stone-faced and then Beth came in. We hugged and she said that if I needed anything to let her know. I told her I'd probably be back at some point to get some US pics of Carleigh. I told Carla that I wasn't coming to work the rest of the week and she told me to take as long as I needed.

Jarrod and Lindsey took us home. Really, Lindsey drove me home in the van and Jarrod followed so he could take Lindsey home. We've let some family and such know what is going on. My mom is coming down tomorrow to stay with us til we leave for Hawaii.

I'm still trying to digest it all. So much has happened today that has forever changed our lives. It hurts knowing that Carleigh won't get to grow up with her sister and that Kyndra will never really know her. It hurts that I won't get to hold my lil girl only but for a little bit and then she'll be gone from me until we meet in Heaven again some day. I know she'll be in good hands but I want her in my arms here with me.

Here are Carleigh's US pics:

Thursday, December 04, 2008

Halfway there!

Today I am 20 weeks and officially half way through my pregnancy. Looking back time has went fast but there are also times when it seems like it goes by so slowly.

I weighed myself today and the scale said 110lbs. I started out at 109 and then dropped to 106 in the 1st trimester. Not much of an appetite can do that. I count my pregnancy weight gain by starting weight so I have gained 1 lb so far. lol Not too shabby, I guess.

I've started having Braxton Hicks contractions but right now they're not too frequent, which is good. I'm really gonna be keeping my eye on them for any preterm labor. I'm so worried about something happening again like it did during my pregnancy w/ Kyndra. I'm just hoping and praying that I can at least get to the point where Carleigh will be able to make it if (God forbid) something should happen. I know I'll be on pins and needles around 26 weeks, which is when I had that bad bleeding episode w/ Kyndra that started everything.

Next week I have another ob appt and I'll be scheduling my midway US. How fun! Then I'll be off to Hawaii and I'll be relaxing in the sun and enjoying my family over Christmas.

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