Carrying to term

[Stephie84]

Hi my name is Stephanee. I'm currently carrying my 2nd son Vayden, who has a severe case of LUTO due to PUV. At about 23 wks we found that his kidneys were no longer functioning. We stopped intervention and selected to carry to term with comfort care post birth.

I keep fight myself about the comfort care. I know all the reasons why I've selected it but for some reason I just can't be 100% at peace with it. I go in and out with it. For 2 good wks I am at full peace then I start doubting myself. I just am so heartbroken over the whole matter

Here is the link to my blog

http://vaydenjamesstewart.blogspot.com/

[MamaBethany]

Stephanee, you have come to a good place, although none of us would have chosen to be here. I am so sorry about the horrible diagnosis you've been given -- there are many here who've gone through what you are doing right now. I visited your blog ....it's just wonderful and I'm touched and encouraged by how you are cherishing little Vayden and celebrating every moment of his life. I for one, and others here, will be privileged to send you lots of virtual hugs and prayers, as much as you want to share with us, too. Vayden is precious to all of us.

You mention Waiting with Gabriel. My Bethany had HLHS, the same thing that Gabriel had. It's a different story, and we made different choices because of the knowledge set we were given, but in the end we chose comfort care and our daughter died in our arms, with no heart surgery incision. We'll feel the pain of our loss forever, but we don't regret any of our decisions. When we believe for certain in heaven, we know it's a better place for our babies. Cherish every moment because you have a visitor from heaven in your womb.

[Darby]

Stephanee,
I am so glad you found us here. I was just in your siutation not too long ago. I gave birth to my daughter on January 30, 2009 at 34 weeks. I too had no fluid becuase Shaunna had non-functioning kidneys. I am so glad to read your blog and see all of the love you have for your little Vayden. The love you have is amazing. I am ammazed by your strength to carry your son. Not mnay people make this decision. Cherishing every moment is what you have left. Don't take any one kick for granit. I had an induction date set for when I was 38 weeks. Surprisingly Shaunna decided to come on her own when I was 34 weeks. So just know it can happen at any time. There are quite a few ladies on here that have recieved the same diagnosis as you and myself. I know of one other lady that is pregnant too, Lee-Anne, where are you?
Please keep sharing your thoughts and questions. We are here for you. I am so sorry you had to join us here. I never wanted to post on here, but I did and I am so thankful I have. It is an amazing group of women that will help you through everything. I look forward to following your story. Your blog is amazing. Cherish every moment. I got to spend a little under 3 hours with Shaunna after she was born before she went to Heaven. Those were 3 hours that I will never forget.
Sorry about my rambling, but again I am so glad you introduced yourself here. You may want to read the thread on regrets to just give you an idea how to spend those precious hours with your son. I will be praying for you that you get to spend time with you angel. That is what i prayed for everyday, was that I would just be able to spend time with Shaunna after she was born. If you have any questions you can e-mail me. Im here for you. You have been joined in my prayers.
Have you found a photographer yet?

[Stephie84]

I'm so sorry that you ladies have to be on this board. I don't wish this upon anyone, however like you ladies I'm glad that there is such wonderful support out there, when bad things happen. I think about Vayden everyday, some days I don't drop one tear, others I can't seem to stop crying.

I think one main reason i'm not 100% set is that my husband has taken this and placed it far deep into a box. He wont open up to me, he wont talk to me, he wont talk to anyone. I've asked to meet with our marriage therapist. However the apts I've made "something has always came up with him" he's in the USAF and can get away with that stuff a lil easier than most.
April 15th we meet with the hospital team including the comfort care RN. Something better not come up on that day. We have to write out a birth plan. I didn't write one with my son, because I knew how things could change. But with Vayden I feel like it's something that I must do. I just have no idea where to begin.
any suggestions.

[HAINAngel2000]

If you have any questions on preparation or if you need anything that we maybe able to offer please let us know.

I am deeply sorry for your results. If you need anything at all let us know.

[Madge]

When I was making my birth plan I went over it a lot. I just kept working on it until it felt right. My son had Trisomy 18 and hypoplastic left heart syndrome, so I looked over birth plans from others who had T18 babies and took the bits and pieces that I felt were worth looking into. My birthplan is at my babydekar.com site if you are interested in using it as a catalyst. There is also my Praying for a Miracle, Planning for a Funeral (http://babydekar.com/2008/09/23/praying-for-a-miracle-planning-for-a-funeral/)post which might be helpful, simply because it goes over how I approached everything.

Do you visit forums or know other mothers who had the same diagnosis? I'm sure they will be more than willing to help you with ideas on what to look into and consider.

Also, my visit with the neonatologist was very, very helpful, because he was able to let us know what to expect. For us, we knew it was the HPLH that would most likely take Dekar, so he explained things very thoroughly.

Yours is a hard place to be---you are already grieving yet you are celebrating the life he still has. It is draining, and there are so many things going on that pull you in different directions.

I can also relate to the distant husband. I honestly did 99% of the planning of everything. He did go over the birth plan, but didn't put one iota of energy into preparing it. He went on doctor visits with me, but was mostly silent. I had to simply distance myself from his attitude. I knew he was dealing with things in his own way, but I needed all the strength and energy I had to continue on with the pregnancy and make all the other plans, along with taking care of the family. I still loved him and was hurting for him, but I couldn't force him to do anything he wasn't comfortable with.

This forum has been a great source of support, no matter where you are in the journey. Please come back as often as you need--even if it is only to read.

The last thing I will say right now, is I carried to term, and I don't have one regret. I know I did all I absolutely could. Some things are simply out of our control.

ETA: I first saw your story at the BF forum, and read your blog.

[amburke2]

Stephanie,
My son had a different root cause, but the same end result, as Vayden. We also chose comfort care postbirth because there was no intervention we could do. We wrote a birth plan (we actually called it "birth experience preferences," because we knew things can change even with the circumstances we were in), and Timothy died in his daddy's arms after 38 minutes and getting to meet three of his grandparents. We decided to go with comfort care because we wanted to savor the life Timothy had with us, and the few weeks and minutes we had with him alive are the most precious to us.

I'm sorry that your husband is distancing himself from this process. I think it's hard to understand because as mothers we don't have that option; we feel every kick and roll of our babies while dad can't tell what's going on even if he's in the same room. One thing that helped my husband get more involved in the planning process was when I asked him to take care of certain tasks - calling the photographer for information, for instance. I don't know your husband or what your relationship is like, so this may not help, but perhaps he's having trouble because he doesn't know where to start with stuff like this, even though helping with the planning is a "fix it" type thing he can do to make it better.

If you have questions, we are always here to give ideas and support. You are doing your best for your family.

[Hope]

I Will Carry You by Selah

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 him photographs of time beginning
Walked him through the parted seas
Angel lullabies, no more teary eyes
Who could love him 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

I hope the words to this song are somehow comforting in the midst of this heartwrenching journey you are on. I am so sorry about Vayden...
Sincerely,
Hope

[linda]

Stephanie,

I will be praying for you dear friend! It's such a tough road that no one understands except those who have been down it. If you ever need to talk, I'm here.

[PDBrahm]

Definitely keep me updated. If you need to vent about a horrible day send me a message because right now that's what makes me feel better; letting it all off your chest. It's like lifting the cover off a boiling pot of water. Since we are so close on due dates I feel we are stuck in limbo together. That horrible place of waiting and not knowing what will happen next. You want to hold your baby so badly, yet you know it means goodbye. It really gets to me after a while so I'm sure you have similar feelings. I'm here if you need a shoulder.

[Madge]

Definitely keep me updated. If you need to vent about a horrible day send me a message because right now that's what makes me feel better; letting it all off your chest. It's like lifting the cover off a boiling pot of water. Since we are so close on due dates I feel we are stuck in limbo together. That horrible place of waiting and not knowing what will happen next. You want to hold your baby so badly, yet you know it means goodbye. It really gets to me after a while so I'm sure you have similar feelings. I'm here if you need a shoulder.


You stated this so well.
Although I've already gone through this, I can remember so clearly how it was being in limbo. It was so hard. :(

[MrsDisel]

I'm so sorry to hear about your son. I'm Lee-Anne, the one Darby mentioned in an earlier post.
I recently lost my son due to Potter's syndrome. I know your pain all to well. If you ever want to talk, just know that I am here. You can also read about our story, the link is in my siggy.

leeanne049@hotmail.com