Sunday, September 18, 2011

Diagnosis: Now What?

When someone receives the diagnosis of triploidy, a million questions flood the mind.  But the biggest one is usually, "Now what?"  How does life go on?  What do I do next?  Where do I go from here?  I can't answer the questions of "Why us?" but I can give my thoughts on preactical things to do to prepare for the birth of your special baby.  Here are some suggestions on things to do as you prepare for the arrival of your precious little one.


Every moment that you have with your little one during pregnancy is precious, but even more so when you realize that those are the only moments you may have with him or her.  You probably want to start planning for her arrival, making funeral arrangements and assuring that you have all the things you need to make precious memories with your baby when he arrives. 


Many people ask where to start.  Good question... You've already done one of the hardest part, and that is making the amazing decision to continue your pregnancy until God calls baby home.  I am praying that you feel peace about that and that God will truly bless the remainder of your pregnancy the way he did mine.  My pregnancy with Whitney was so bittersweet.  How could it not be?  But I really tried to focus on the "sweet", knowing that the "bitter" would come in due time.  So that's where I would say to start... savor every second you have with your baby in your belly.  Every craving you have, write it down.  Or just remember it.  Any song you hear that touches a heartstring, write it down.  Make it "his" song.  I don't know if you can feel your baby move (I could barely feel Whitney because she was so small), but if something you eat or drink really gets him going, write it down as "his" favorite food. 


By creating things specific to your unborn baby, you are creating memories for yourself and family that will last a lifetime.  For instance, we went to the Olive Garden the same day we found out Whitney was a girl.  It was there that we decided on her name.  So we always say that is "her" restaurant.  We think of her every time we go there, and we even ate there after her memorial service.  We also have Whitney's song ("River Flows In You" by Yiruma) that was playing in our delivery room the moment she was born, and a Bible passage that is "her's" (Psalm 145).  These things help me to feel connected to her even now.  So that is my spiel about enjoying the moments you have with your little one in your belly.  Make memories... go to the zoo, a park, anything.  Get out and make memories as a family of 3 (or 4 or 5 or whatever your case may be).  Yes, the moments will be bittersweet.  But my prayer is that as you walk this journey, your pregnancy will be filled more with the "sweet" knowing that the "bitter" will come in its own time.  I felt an urgency to try to plan all these things for when she passed away, but I had to remind myself that she was still with us, and I should enjoy it.  So I know there are so many things to prepare and think about, but I hope and pray you can quiet those tasks to enjoy some of your pregnancy.


Have maternity pictures taken professionally.  Or if you can't do them professionally, be intentional about taking pictures of your pregnant belly.  Even if you don't think you will want them, take them anyways.  You can always hide them in a shoe box under your bed if you don't want the pictures.  But you can't create a picture out of thin air once the time has passed. 


So now on to the practical things you can do to prepare for your little one's arrival.  Of course you want to be as prepared as you can for the unthinkable, so here are some things that I would suggest.


1. The first thing I would suggest is to contact Laura from an organization called "String of Pearls."  You can request a keepsake kit... she will send it to you free of charge and she is just such an amazing woman.  You can check out her website here:  http://stringofpearlsonline.org/  Just email her and let her know about your diagnosis and tell her I sent you her way.  I had the opportunity to meet her in person last year and she is truly an amazing woman and awesome prayer warrior.  Her keepsake kit will have all you'll need to make memories.  We weren't able to use the clay that she included because Whitney's hands and feet were too fragile, but she included stamp ink and supplies to put your baby's footprints on an ornament and some other stuff.  She really thought of everything in putting together her keepsake kit. 


2. The second person I would suggest contacting is Heidi from Angel Babies.  She makes infant gowns especially for babies like our's.  She has multiple sizes available, too.  Whitney was always very, very small.  Her limbs and head generally measured on track, but her belly was tiny.  Heidi sent me two sizes, but even the smallest was a little too big.  But we still made it work and the pictures were beautiful.  Here is her website: http://angelbabiesinfo.com/  Again, its totally free. For Whitney, we had two outfits.  One that the hospital provided and the one from Heidi.  I wanted to be able to keep an outfit that she had worn, as well as have something for her to be cremated in (more on that in a bit).  I hadn't thought about this ahead of time, but when the hospital said they had tiny gowns we could choose from, I was so thankful.  We first dressed her in the gown from the hospital and took pictures.  Then we put her in the gown from Heidi and took more pictures.  Then we left that outift on her when we sent her to the funeral home.  We also had two blankets for this same reason.  I wanted to keep one that she had been wrapped up in, but also wanted her to be wrapped up when we gave her to the funeral home, too.


3. The third thing I would consider doing is contacting an organization called "Now I Lay Me Down To Sleep."  They take beautiful pictures free of charge and give you prints of them for free.  They usually do beautiful editing, as well.  We tried to get NILMDTS in to take pictures for us, but for whatever reason, it didn't work out.  You should get in touch with your area director before your baby is born (anytime- the sooner the better) and then call them when you go to deliver. Sometimes they will even do maternity shoots for you.  (Which, btw, I would TOTALLY recommend doing a maternity photo session.  You may think you won't want the pictures now, but at least you will have them if you do in the future.  Same goes for pictures at birth... I would say take as many pics as you can.  Maybe even have a family member in the delivery room with you to take pictures.  (If you feel comfortable.  I totally understand some people don''t want that. We had my mom & sister in the delivery room with my husband and I when Whitney was born and I am so glad they were there to take pictures for us.  We have several hundred from that day and I am SO glad I have them.)  But back to NILMDTS... We didn't use them but I know a lot of my friends have and loved the pics.  The photographers are volunteers so sometimes it may take a while to get your pictures back, which is why I also recommend having someone else there to take pictures, too.  Here's their website: http://www.nowilaymedowntosleep.org/ There is a link in red at the bottom to "find a photographer."


4. Another thing you can do (but is not imperative) is develop a birth plan.  Laura's website (String of Pearls) has a great link for suggestions for your birth plan.  Heidi (Angel Babies) also has a book you can download in PDF that has recommendations for this as well.  Its basically just putting in writing things that you want or don't want to happen, but may not be in the frame of mind to think of on the day of delivery.  I would also recommend appointing someone who will be in the delivery room with you to be your advocate.  (Your husband or whoever you feel most comfortable with.)  Just someone who knows how you want things to go and will tell the nurses/doctors.  My mom was that person for me... she insisted things be done the way I wanted them to be done, so that I didn't have to exert the energy.  It was nice.  You can also let friends and family know ahead of time what you want in the way of visitors that day, and let your "advocate" be the one to handle that.  If you want visitors, great.  If you just want family time, great.  It is totally up to you...don't feel like you "should" do something a certain way.  This is one time in your life where you have full permission to do things your way, and what is best for your family.  Again, this isn't a mandatory thing but it helped make the day run smoothly.  Also, if you have a perinatal hospice in your area, I would suggest calling them. We met with our's the Friday before Whitney was born, not knowing she would come so soon.  When I called them to tell them that Whitney was going to come early, they called the hospital where I was delivering and made sure I got an awesome nurse who was highly experienced in dealing with infant loss.  This made all the difference in the world!


5. The final piece to have in place are his funeral arrangements.  I always hate talking about these the most because there is nothing "normal" about it.  I have to admit, before Whitney was born, we did not have any of this planned.  Like I mentioned before, she came several weeks earlier than we thought she would.  My husband made a few phone calls to funeral homes before Whitney was born but hadn't actually met with anyone and made arrangements yet.  The only thing we knew was that we wanted to have her cremated so we could bury her remains at a later date.  We lived in California at the time, far away from our family and homes, so we knew we wouldn't be there forever and didn't want her buried there.  I was shocked at how much the prices for infant cremation varied.  Seriously, we got a range of $200 to almost $1000.  So it does pay to check around.  The day we went in to deliver, our nurse asked if we knew what funeral home we were going with.  We didn't.  She recommended one, so we called, and they had the best price.  We were so thankful for that and they wound up being wonderful.  So if you have any connections to the delivery nurses at your hospital, they may have a good suggestion.  This may seem like such a big piece of the puzzle, and like there is so much to do in this regard, but as we found out, it doesn't have to be a HUGE process.  The funeral director came to the hospital and picked up Whitney, then she came to our home to have us sign paperwork and then again to deliver her ashes.  There is more detail involved if you choose to do a casket burial and funeral service.  But I guess the best thing in this step would be to first select a funeral home that you feel you can trust and who seems to have a sincere interest in helping your family through this difficult time.  I gave that task to my husband and was so thankful he took that on.


Most of all, give yourself grace.  It is easy to feel rushed, like you "should" be doing a lot of things.  But just realize that what will happen, will happen.  You can do your best to be prepared, but don't over-exert yourself.


 


 


 



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