I am carrying to term

[Madge]

I am 33 weeks along today. I have no doubt I am doing the right thing by carrying to term, but recent days have been hard.

My son has been diagnosed with Trisomy 18. He has a severe heart defect, so the drs. don't think he will live long if he is born live. He may die in utero at any time. The waiting.....it is so hard right now. :(

On Monday we go to the dr. again to get an ultrasound and to talk to a neonatologist. It is more for me---to help wrap my brain and heart around all that is going on. It also may be the last time we see him alive.

Some days it is all surreal. I never thought I'd be praying for a miracle and planning for a funeral.

[Cheryl Haggard]

Madge, I am so sorry. What is your sons name?

[Madge]

Dekar Ezri (pronounced Decker Ez-rye)

Dekar means "pierce" and Ezri means "help of God"

[Cheryl Haggard]

A very strong name...
Everything you do now, you do as a mother. This is very important. Alot of moms on here will tell you to write a birth plan, or at least start thinking about one. I agree. I hope that some of the writings you find within this forum will offer you support and hope. We are always here if you need anything. You and your family will be in my thoughts and prayers.
Cheryl

[KEA's Mom]

Madge,
My heart breaks for you. I was just thinking a few minutes before I checked for new posts that my time with my daughter flew by as though it was just a moment. Amanda was stillborn at 29 weeks with no warning and with no reason given. I reflect upon my pregnancy and Amanda's birth everyday because those were the only moments God gave us. Please try to cherish this time you have, although you're preparing for the unthinkable. I will pray for you, your son and the rest of your family. God bless you.

[Joshua's Mom]

Madge:

My heart breaks for you. I was in your place just 4 weeks ago. My beautiful Joshua was diagnosed with a rare chromosome condition (which involved chomosome 18) and the prognosis was not good. I too did not know how long I would be blessed to have Joshua. Unfortunately, he did not make it to term and was born still at 32 weeks. Take this time to enjoy every kick, movement, hiccup. Enjoy these moments, treasure them...journal them.

Regarding the ultrasound...take a video camea to record the experience. Shortly after Joshua was born, I called the genetics dept to see if I could get a video of his last ultrasound and they told me that the medium was not compatible with DVD's or VCR's.

Your family and Dekar are in my thoughts and prayers.

Carolyn

[carissa13]

Madge ~ I knew at 20 weeks that my son would not make it much past birth, if he even made it that far. My heart truly does break for you because I understand needed to go to the doctor in hopes to wrap your brain and heart around what they are telling you, I did the same thing!! We wrote a birth plan and for us, it was good because then everyone involved in our sons birth would know what we wanted and expected from them. It really gets you thinking about what is important to you.
My son made it to 37 weeks and I went into labor (I was going to be induced 4 days later, I wanted him born alive) and he was born alive, he opened his eyes and made some sqeaks for us and even had a pouty lip.
I think keeping a journal is a great idea, I wish I would have done it more. I was just reading what I had last night and I wish I would have done it more. We tend to forget some of our joy when our heart is broken.
Thinking of you and Dekar, you will be in my prayers! I am a great listener if you ever need one! I'm sad that you have to be here for the reasons you are but glad you are on here because it will help you on this journey!

[HAINAngel2000]

Madge, We would be honored to send you a beautiful burial garment for your son. If you are interested? If you are send me your info info@heavenlyangelsinneed.com with your Name, address and email. We will also send you a memory box.
I am deeply sorry. I have no words that can express my heart for you. I am just heart broken for you.
Mary

[dfelton]

I've been thinking of you, Baby Dekar, and your beautiful family everyday... Keeping you all in my thoughts and prayers...

~Danielle

[amburke2]

Madge,
I know that you feel pulled in two directions: when our son Timothy was diagnosed with a fatal medical condition, we constantly prayed for a miracle and planned for his death. It was so odd. We also found ways to celebrate his life, and I hope you have been (or start) doing that with Dekar. We read to him, camped in the backyard, baked cookies, just like we would have if he had lived longer.

We were blessed with a wonderful medical staff, and I hope you can say the same. Our doctor was very supportive of our desires for labor, delivery, and the time after birth. Timothy was born alive--despite warnings from specialists that he had a high chance of dying before birth--and lived for 38 minutes, and he spent the whole time being held by people who loved him. We were glad we prepared the things we did.

At the same time, knowing that your child is not healthy and not being able to do anything about it is frustrating. It makes these final weeks especially difficult. I know I felt like the clock was winding down on Timothy's life as his due date approached. We "compensated" by doing more special things with him.

I'm glad you found the forum. I wish I had before Timothy was born. We'll be here to listen when you're having a bad day, or when you want to celebrate Dekar doing a jig in your belly!

I'm praying for you.

[Marcus Momma]

I am so sorry I will be praying for you and your family during this time.

[Madge]

Part of what makes it harder on some days is that life still goes on. In a way it is good, but some times it's not. I have been blessed with eight other children, so things are always busy around here. Sometimes too busy, when at times I just need to sit and cry and think of Dekar. I have good kids, so they understand. But yesterday my heart broke when I saw my 8 yo's journal that said, "My baby brother is going to die.":(

I am doing what I can to celebrate the life that we now have with Dekar--I purposely eat ice cream every day because he always jumps around after I eat it. :D I have been journaling, and am thinking about starting a blog, simply because this has made an impact on my whole life--the present and the future. It may help me and it may help others. I don't know--I'm still thinking about it. I received my maternity session photo slideshow link from the NILMDTS photographer Danielle, and cherish that as part of the memory making process. She did a very nice job. The Craig Cardiff song is beautiful and makes me cry every time I hear it.

I have very little control over this. I can only take good care of myself, like I have with every pregnancy, and make plans for the many different ways this might go. I know there is always room for a miracle, and I still plan for one, along with planning for the worst case scenario. One thing I read recently that gave me peace was basically, "You do what you can do, and let God do what God will do." That sums it up for me.

I know I serve an awesome God. I also know He is sovereign and all things have a purpose. I don't know how He can be glorified through this, but I will not fail to serve Him. I told Him early on that if this is His will, that I will accept it. He has brought us through other hardships, and I know He is here with us now, through this.

I'm glad there is a forum like this. It does help to have others who understand. Thank you.

[linda]

Madge, you are amazing and my heart is breaking for you. God has not forsaken you nor has he forgotten you. Hold strong to HIM; I know that's hard; I too doubted him but realized He wanted me to be there for others after the loss of Ethan. The Lord has constantly reminded me that my son is in heaven and that some day I will be reunited with him.

Just knowing your other children's hearts are broken for little Dekar breaks my heart. I so know how that hurts, my son was 7 when Ethan passed and it was so hard on him. He had asked for a sibling since he was 3 or 4...and then to be able to concieve and then to loose him was devistating.

Let your other children see you mourn; they need that (to some degree) I saved the serious melt downs for the shower or my bedroom at night. But Elijah learned so much from us when we talked about our feelings of loss and how our hearts hurt. When I wept he wept, I know he learned to feel the loss of his sweet baby brother and there was healing in that for me.

Teach them to find the simple pleasures in his spirit, that his short life is not to be dismissed and that they will always have a brother in heaven.

All my thoughts and prayers for you today! May the sun shine bright and may something simple like butterfly's find their way to you today!

[Cheryl Haggard]

Madge,
A blog is a wonderful idea. You can share your feelings and emotions, and truly you can help other families. Here is a link that you can find many blogs by mothers regarding their pregnancies, loss, and feelings. Check some of them out. You will realize that nothing is off topic...
http://babylossdirectory.blogspot.com/

[Dawn Marshall]

Hi madge...it's sis from babyfit. I would love to send you a special bear and journal/babybook. They are from sufficient grace ministries. If you would send me a private msg with your full name and address, I will get it off to you immediately.

(I wish I could give you a big hug...)

[Madge]

Dawn, the private messaging isn't working for me. Can you try sending me one and I'll reply to it?
Is there a website for this ministry?
Thank you.

[Dawn Marshall]

Hi Madge...you can just email me at dawn@thewavz.com

Yes, there is a website here is the link www.sufficientgrace.net
Kelly Gerkin began this ministry after suffering the loss of three precious babies...Faith and Grace (twin girls born still) and Thomas (her son who died shortly after birth due to Potter's Syndrome). I have met her personally and she has a deep passion to "Comfort others with the comfort we have received"...(2 Corinth. 1:3-4)
Feel free to contact her personally...she would love to listen anytime.

[Madge]

This week has been better. We had an appt. on Monday, had an u/s and met with a neonatologist. He really helped us to better understand what to expect with Dekar. This helps us to feel more comfortable with delivering locally now that we know they really couldn't do more for him downstate than what they can do up here---which is basically comfort care.

We know what the doctor's can help, and what they can't. I just didn't want to have Dekar and then have regrets with not doing all we could. Now that we know more clearly what is possible we can make our decisions and hopefully be at peace.

I am working on a birth plan now and will be talking to the local pediatrician and my OB about what we desire.

Then, it is all just a matter of time to see how this all works out. Perhaps he will be born still, but maybe we'll have some time with him.

I'm sure I'll still have good and awful days....I expect them. Thanks for being here for me.

[LiseB]

I can't begin to imagine what you are experiencing right now. But I am praying for you, your family and precious little Dekar. May you feel God's arms around you as you walk this path.

And know that you have already impacted lives by sharing this testimony of faith that you are sharing on this forum. You will be in my prayers every day!!

-Lise

[Marianne Sisovsky]

Madge,

You and baby Dekar are in my prayers. God bless you and your family.

[sandyb]

May God bless you and your family
I will be praying for you lill man and your family

[motherofthree]

Madge,

I, too, completely understand what you are feeling. I found out we would lose our Kavya at just over 25 weeks. We decided to carry to term, and it was the best decision we could have made. We only got two hours with Kavya, but it was two hours of pure love and peace. As my sister put it - We held a lifetime in our arms.

During the pregnancy, we at times took great joy, and at times had great sorrow. The duality of such intense love and such intense sorrow at the same time is a difficult thing to bear. I remember how surreal it was at times. Sometimes I described it as being in purgatory - just this horrible waiting. When the day finally came for her birth, I was actually a little anxious to meet her - to see what she looked like, to hold her in my arms. Living with the knowledge of her pending deathwas such a blessing and a burden. This constant weight on your shoulders, mixed with the ability to put as much love into her brief little life as possible.

I know that sometimes Trisomy 18 babies live longer than expected. I will pray for peace for you, your son and your family. And I will pray for time - more time than you expect to enjoy and love your beautiful baby. If you need to talk, we are all here for you.

[Dawn Marshall]

Hello Madge,

I just wanted you to know that I have been thinking about you alot and praying for you...

[Madge]

I am still here. I met with the pediatrician yesterday to go over my birth plan. Unfortunately that didn't go so well. He had the sensitivity of a bed of nails. I won't even go into it because it was so upsetting that a doctor could be so non-chalent about my circumstance. I felt he was just looking at this as a medical procedure and his bedside manner had much to be desired. I quickly ended the appt and started crying in the parking lot. :(

Fortunately, I had an appt with my ob today and told him I didn't have a peace about having this particular ped. He asked about it, and after hearing what I told him he said that the same rules don't apply in my case and I can have a different doctor. (There is only one ped. in this area and usually a ped is required for a c-section.) I asked if I could have my family doctor, and he said that would be fine. Now I am waiting to hear back from him. I don't think he will turn down my request...if he does, I'll have to find somebody else.

My ob has been wonderful. I know that he doesn't have to deal with this a whole lot, but he has been so good---trying to be as sensitive and accomodating as he can be.

I have a c-section scheduled. If I go into labor naturally, I will still want a c-section, as I hope to have some time with Dekar alive. I know there is a 50/50 chance, but I'm praying we get some time with him.

The not so good news is that it seems Dekar has quit growing. At 32 weeks I measured 33 and now at 36 weeks I measured 32. I know part of it can be positioning, but I have been pregnant enough to know this is not the same. The specialists had told me he may just quit growing, so it doesn't surprise me...but it is still sad.

Dawn, I got the basket from Sufficient Grace ministries (I hope that name is right)....I opened it up, but have had a hard time doing anything with any of the contents. I know I will take the journal to the hospital to have his footprints stamped in it....thank you for having it sent to me. I really appreciate it.

[Madge]

Starting a new post instead of editing the other one.....

So, we scheduled a date for the c-section....and I don't want to tell anybody about it. I did email the NILMDTS photographer...but that's it. I told dh that I don't want anybody else to know about it. I don't even want to tell the kids until the day before, because I want to keep it private from everybody. I feel like it is almost a "holy" event---that's not the right word, but this is something totally different and I don't want it to be ruined with cackling and questions, etc....does anybody know what I mean?

I very well might not make it to that date....but even so, I am still feeling the need to hold onto the date and time. DH doesn't have a problem with it, fortunately. He says everybody knows enough about what is going on, and when all is done we can contact people on our own timeframe. I know the pictures that are taken are going to help a whole lot with sharing the news with everybody.

I really hope people understand, yet at the same time, I don't care if they do. Sorry if this sounds really cold....

[momofanangel]

You have to do what feels right to you. If you don't, you will end up regretting it. I will pray that your family doctor is willing and that you can spend some time with Dekar while he is alive. ((hugs))

[motherofthree]

Absolutely does not sound cold. I completely understand how you feel that this event is sacred - you don't want anyone infringing on that time. I was and still am careful about who I speak with - if it is someone who I know has the sensitivity of a doorframe, I simply don't give them the honor of knowing about/hearing about/"meeting" our Kavya.

One thing that I did, that I am so glad I did, was to get molds of Kavya's hand and footprints. You can get kits for 10-20 dollars. I don't know if you've considered this, but my nurses were very helpful to get this done (I also had a c-section and wasn't able to do much moving about). Another thing I did was to get two blankets and two loveys - I kept one set with Kavya until we left the hospital, and switched them out when we left. The blanket still smells like her - it is the most wonderful thing, and although I have tears sometimes when I bring it out of the airtight bag, it really takes me back to the peace and joy I had when I held her. I will never forget her smell.

Anyway, I'm blabbering. I would be more than happy to share my experience with you in more detail if you would like or if you have any questions. I pray for you and your family - still praying that your Dekar lives longer than expected so you can have more time.

I'm so glad to hear that you stood up for yourself and asked for a change of doctor, but sorry to hear you had to endure his insensitivity. I hope everything works out for the best in that area. Continue to take care of yourself.

[KEA's Mom]

Madge,
I think of you often and have been wondering how you're doing. I lost my daughter at 29 weeks gestation and my best friend is 24 weeks pregnant and her daughter was diagnosed with Trisomy 18. She and I have been spending alot of time talking about what time she may have with her daughter. I pray that both of you will have time with your precious babies--that you'll be able to look into their eyes at least once and feel their hearts beating against yours. Although that was not to be for my time with Amanda, I can tell you that her birth did feel holy. There was so much heartache when we found her heart had stopped beating and going thru the motions of inducing labor, but the hours we had with her after she was born still, were so very precious and it was as if time had stopped. There was only her, her Daddy and myself. Although our families did come in to see and hold her, it always seemed like just the three of us, while we were together.
And your comment doesn't seem cold. You are doing what you feel is right for yourself and your immediate family. Follow that instinct the whole way thru--be true to your heart. Know that I'm thinking of you and wishing you the very best.

[Madge]

One thing that I did, that I am so glad I did, was to get molds of Kavya's hand and footprints. You can get kits for 10-20 dollars. I don't know if you've considered this, but my nurses were very helpful to get this don

I know the hospital does imprints in clay, but I was hoping to find something that actually makes the form of the whole hand or foot. Is that what you are talking about? I would like to know where those are available.

I like the blanket/clothes idea too. I do have an outfit for him, but I think a second one is an excellent thing to do. Thanks for that idea.

[motherofthree]

Madge,

I got my molds at Michael's...do you have any of those close by? I have also seen them at JoAnne Fabric.

The molds that I did are of plaster - first you mix a powder with water and pour it in a heart-shaped mold, then you put your baby's hands and/or feet in the mold solution for a minute or less depending on how fast it sets. When the mold sets, you give it another minute and mix a plaster of paris solution, pour it in the mold. When that dries (mine took about 25 minutes) you have a little image of your baby's handprint and footprint.

I waited too long to pour my plaster - should have had the nurses do that in the hospital, too, but I took my molds home to pour. By the time I got home from the hospital they had dried a little bit (boy that was a freak-out my husband will probably never forget). But mine still turned out reasonably well - one of her handprints, her fingers curl around just a bit, and you can see the shape and outline of her perfect little fingernails and everything! If I put my finger in the palm of the mold and close my eyes I can nearly remember doing that with her hand - all the wrinkles and everything. I love it. Anyway, I'm blabbering again. I'll look online for a link to the kit I used so you can see it - they also have mold kits that are completely 3D, but I was worried about if they would turn out right, so I did the regular one.

Okay, here are the links I found. The first two I didn't know about before hand. The last one shows a picture of the kit I got at Michaels (the one in the yellow box). It makes the print that stands out. But the links show them in bronze or something. I would have loved to get something more permanent than plaster if I could have afforded it. I have Kavya's in boxes wrapped in bubble wrap to preserve them.

http://stores.ebay.com/MarlasMarket
http://www.castingkeepsakes.com/
http://www.michaels.com/art/online/displayProductPage?productNum=gc0177

I'll add one more thing - they also have the stand up 3D ones at Michaels and if you look in the Sunday paper you can usually find a 40%off coupon and it ends up costing under $10 for the kit.

[Madge]

Thanks for letting me know about Michael's. I have never even stepped into one of those stores before so had no idea what they had.
I found a coupon at the entry for 50% off one product, so was able to get one of my kits at half price. I bought two different kinds, hoping if there is a problem with one, the other will work better.

I was hoping to have a camcorder, but ours is broken and we simply can't swing the $$$ right now. At least I have NILMDTS to look forward to.

[KEA's Mom]

Beth,
Is this the type that's kind of like playdough that you press a hand or foot into and then you pour the plaster of paris into it to create the image? That's what the hospital gave us for Amanda. I still have the playdough-ish mold and I've kept it in a plastic bag so it's not hardened but it's not soft like it was either. Do you think I could create another image with more plaster of paris? I'm afraid to damage the mold as I, too, like to press my finger against the place that her little hands and feet did.
Thanks:)

[momofanangel]

You might rent a camcorder for a week or 2 from a rental center like Rent One,etc. We did that for vacation one year. It's pretty cheap that way--especially if they have any specials going on. You might be able to check it out on line.

[Madge]

That's a good idea. I am thinking I can even swing a cheaper model. I was looking at one that is a little higher, but better quality. Even a bad recording would be better than none at all, so may just downgrade.

[Kathy Schneider]

Madge,
You may want to ask around to your friends and even acquaintances from church or work. Someone may be willing to lend you one especially if they know the reason.

[motherofthree]

Is this the type that's kind of like playdough that you press a hand or foot into and then you pour the plaster of paris into it to create the image? The kind I used was very similar, but you mix a separate solution instead of using the clay to make the initial print. It ends up a kind of gel substance and then as the hand sits in the gel, it hardens to a rubbery consistency. But it's the same concept. And I used the kind you mentioned to make a mold of Priya's hand when she was 1 1/2 years old.


Do you think I could create another image with more plaster of paris?

I don't see any reason why not. Hmmm. If I were doing it I might spray it with just a little non-stick spray to make sure the plaster didn't bond to the drier dough...I'm not sure. But I've not tried that in particular. It most probably would not present any problem, but I always try to err on the side of caution, so I probalby would use a non-stick.

But here's an idea if you're too worried about ruining the mold outright...get another kit and make a handprint from one of your other girls, then wait until it dries a bit more and try to make another one - a sort of test run. I'm sure one of your girls may like doing this bit of fun. And plaster of paris is pretty cheap, so you wouldn't be wasting a bunch of money. Also, you would for sure keep your precious clay mold safe.

[KEA's Mom]

That's an excellent idea, Beth! I will--thank so much.

[Marcus Momma]

Just letting you know my prayers are still with you. ~HUGS~

[Jayme]

Beth,
Do you think I could create another image with more plaster of paris?
Thanks:)

We had a jelly like one that turned kind of rubbery when set. We made 4 molds initially and they still worked even as the impression dried a little. That being said, we knew with each mold there was a chance that the impression would not come out. I agree with the idea of getting another kit and testing it first. The nice thing about having more than one mold is that if one were to ever break, you would still have one. I know that my mold of Justin's foot is one of my most precious belongings. I did still keep the original impression but it has dried beyond use. Interestingly, it also shrank as it dried. But I still like having it.

I hope whatever you try works out for you.

Madge,
We ordered a bunch of kits from Casting Keepsakes. It's an online store. They are the ones that allow you to mold the entire foot or hand instead of just a print. Unfortunately Justin arrived before they did. But I am in the process of finding out if they can be used outside. If so, I want to do a mold of my husband and I holding hands to put in our memorial garden. I do love having a mold of his footprint but I will I had the whole foot and his hands were clenched so handprints wouldn't work but a full mold would have. I hope you get the chance to make every memory possible. My thoughts are with you.

[Madge]

Jayme, I got one that will make one of the whole foot and hand each. I also bought one that makes the raised impression--not just a pressed imprint. I don't know how his hands and feet will be, so I wanted to have all the options I could. The ones at Michael's seemed very similar to the ones at the website you mentioned, plus it was less expensive and I have them ready to go--something I am happy about.

[Jayme]

Madge,

I'm glad you were able to find both. It will be good to have options. I will have to look at Michael's.

[motherofthree]

Madge, I'm glad you found those. I wish I would have thought to do both - to have the complete 3D image would be so wonderful. I hope that they both turn out!

[Madge]

I don't know what brought me back to my original post, but I'm glad I reread it. There are things I don't remember--like taking that second outfit to the hospital. I took one, and he was taken to the funeral home in it. When I picked the clothes up they smelled like the funeral home. :(

I did have a special blanket for him, though--the hospital downstate let us pick one out after one of our appts. I thought that was very nice, since they knew I wouldn't be delivering there.

I am so thankful that this forum is available. You all have helped me so much---from the photos to the prayers, I don't know how I would have done any of this without your extra support.

I think of Dekar so much. The major fog has cleared (after almost 8 months), but I still think of him so much. I am glad that I chose to have a special day to remember him every month, or it seems he would easily be forgotten....maybe he wouldn't, but I am the only one who ever brings up Dekar's name. Maybe one of the little guys will (ages 6 or under), but nobody else does. But since we have "Dekar Day" and eat ice cream, I know that he is outwardly being remembered.

Reading my above post about how hard it is that life goes on (while I was still pregnant)---that is still my biggest struggle. Life goes on. Sigh. The healing continues and I'm still discovering what my new "normal" is.

Thanks again, to all of you who have been here for me.

[MamaBethany]

I love that "Dekar Day" every month.

How do you pronouce the name? "Dee-car", "Day-car" ? I want to have it right.

[Madge]

When we saw the name it was shown as pronounced "decker", so that is what we say.

I like the Dekar Day every month too. :)

I really need to get a small glass cabinet for his memory items. Right now they are in a suitcase, closet and on my desk. It would be nice to have one place for everything.