#39 - ANOTHER GIFT FOR GRACIE

A friend of mine who is really into scrimshaw art just surprised me with a picture of something that he plans to drop off for us next week.  He was really excited about completing this project and couldn't wait to share it with us.  It is made from a piece of salvaged ivory, and his scrimshaw work is always done freehand.  I am also pretty excited about it, and wanted to show it off.  I can't wait to hang it on our tree next week!  (Thanks, Raheem!)

And the winner is....

Good morning ladies. I put the name of each participant in a bag and had DH pick a winner. Betty from Random Thoughts at 65 MPH is the winner of the stocking.  

Make sure to visit Mackenzie's Mommy at Missing Mackenzie for today's giveaway.   

Betty - please shoot me an email (there is an email link under my profile link on the right side of my blog) and provide the following information....

 - Color of the stocking - pink, blue or dark red
 - Name that you want embroidered on the cuff
 - Toe of the stocking pointed to the right or to the left? If you have no preference, it will be to the right.  
 - do you want wings?  if so, do you want the sheer nylon wings or the feathery wings?
 - mailing address so I can get the stocking to you.

25 DAYS OF GIVEAWAYS

NOTE: These giveaways are open to all baby lost mamas. If you didn't sign up to host a giveaway we still want you to participate and try to win some of these GREAT items. We want to spread happiness to everyone, not just those who are hosting a day!

Welcome to my Giveaway day - my day is officially Tuesday the 15th, so I am a little early. I am not feeling that well, and will probably go to bed early tonight, and I wanted to make sure that this was ready to go for Tuesday (plus...it's Tuesday on the other side of the globe, anyway!). A big thank you to Tina @ Living Without Sophia and Ellie for putting the giveaway together. It has been something to look forward to each day, and I am looking forward to participating again next year!

Everyone in my family has always had a special Christmas stocking – I cannot remember a day that any of us have had matching stockings. About a month ago I started looking for a stocking to buy for Gracie, and came up empty after much searching. I found a few that were okay, but nothing that really spoke to me, so I decided to make my own. It was a simple enough idea when I started, but nothing is ever simple!! I have finally finished my first prototype – it doesn’t look too bad for the first one, but there are definite improvements and corrections to be made!

If you are the winner of Tuesday's giveaway, you will get a custom stocking for your angel. If you are a mama to angel twins or triplets, I will make a stocking for each angel. You can pick the color - pink, light blue or dark red. Your angel’s name will be embroidered on the cuff in the same color as your stocking. (I will be getting a darker pink thread for the names on the pink stockings, since the first shade I used is a bit too light.) Your stocking can be plain like the first picture, have simple angel wings like the second picture or have fancy feather wings like the third picture.

To register, just leave a comment below.  If we have not already 'met' please tell me something about yourself.  I will leave this giveaway open until at least 6:00 a.m. (EST) Wednesday morning, but it may be later than that until I announce the winner. If I am not able to get online to announce the winner before I go to work Wednesday, it will likely be sometime around 7:00 p.m. Wednesday night until I can do so. (Winner will either be picked from a hat by DH or by random.org)

Thanks to all for stopping by!

#36 - A DAY IN THE LIFE & Weekly List 6th Edition

Aside from my venting post about the insurance/chromosomal analysis debacle that I posted on Wednesday, I haven’t spent much time in blogland over the last week or so, as things have been crazy busy.  So busy that I have even missed out on registering for some of the awesome giveaway prizes that were offered at the end of the week, and I also didn’t get a weekly list done or posted. 

We went to the cemetery on Saturday morning to do our Christmas decorating.  The decorating was unexpectedly started earlier in the week by my mother-in-law and my step-mother – they were shopping together and found a very pretty Advent cross made of fresh greens.  We took our little artificial Charlie Brown trees, the string of solar lights, our little baby loss colored balls, and Gracie’s personalized ornament and battled the snow and the frozen ground.  When it was all said and done, this is how things looked…. Even though many of you have experienced this, I just have to say how much decorating at the cemetery sucks. 

 

     

When our decorating was complete, we hopped back in the car and started our 3 ½ hour drive east for an annual Christmas party.  I knew that there would be a few babies and young kids there, but even with those expectations, I got knocked on my ass last night.  There were a few more little ones there than I had anticipated, ranging in age from newborn to six years old – and two families were also expecting.  Quick summation - dying inside.  So…I drank.  I drank more than I have had at one time since Gracie died.  In hindsight, probably not a good decision.  But drinking or not, the whole evening made me realize just how badly I want a baby to love and nurture and watch grow and learn.  The desire for a baby is nothing new, but I don’t think I realize exactly how strong the desire really is until I am surrounded by it.  The evening really made me think about how strong my bond to Gracie was, even though she never took one breath outside of my body.  It also made me realize how quickly I can become so green with envy around people with babies and young children, especially babies about the age that Gracie should be.  Not just a pale shade of green, but one of the brightest, ugliest shades of green that you can imagine…and if that’s not bad enough, the envy tends to make my cynical streak worse.  I don’t wish ill fortune on anyone, and I would never wish this on anyone, but my brain just keeps screaming that little phrase that we are all so very familiar with …. “Why me???”

During the ride home I thought about all of this, and then thought about it even more when my husband commented on how he perceives/d my green state of envy.  I thought about all of the realizations I have had about myself over the last 4 months, and all of the things that seemed to be emphasized for me last night.  Here is what I came up with.

• I am stronger than I ever thought I was, but most of the time that strength is for the benefit of the people around me, and not really for myself.  Life within my four walls is much different than life outside of the walls.
• This blog has helped so much when it comes to living within my four walls.  Most of the people around me would do anything to help both of us through this, but because most of them don’t have a clue what it is like to live through this, they don't know how to act or what to say when I talk about Gracie.  Consequently, I have not invited most them to read my blog.  I initially wanted it to be informational for those who have never been down this road, so they would understand what we are dealing with on a daily basis, but I quickly realized how unrealistic that would be - so many people around me freak out at just the mildest grief comments posted on Facebook, that I can not imagine how they would react to reading some of the things written here.  Some days it really feels like I have a double life….
• I’m not generally an envious person, but I don’t know how to turn this baby envy off.  I struggle with it on a daily basis, and the only people that I am not envious of are people who have had their rainbow babies – because I know that they have stood in this spot with similar emotions. 
• I am married to the most wonderful man in the world, but sometimes it confuses me that he doesn’t experience the same envy.  We are experiencing the same loss, yet we are not experiencing the same grief.  Sometimes we absolutely cannot relate to what the other is feeling or experiencing. Some days we are not even in the same book, let alone on the same page. 
  
• No matter how graceful I try to be in dealing with this loss, it never seems to be enough.  
• I have struggled with my faith more over the last 19 weeks more than I have ever struggled with it.  It has never been a strong point for me, and just when I think that I am starting to figure it all out, God drops a nuke in the middle of my life – a nuke so big that it can make the most religious and faithful question the meaning of everything.
  

I am going to roll this into a pick-me-up and move right into Tuesday’s giveaway (part of  Tina’s 25 Days of Giveaways.  Read on to my next post for my Giveaway information. 

#35 - THE INSURANCE COMPANY - ANOTHER COUNTRY HEARD FROM

So here I sit, waiting for Jeff to come home so we can discuss what is probably the most important information we have gotten since Gracie’s death. Among other things, I am completely dumbfounded by this information. I am frustrated beyond belief, and I am feeling let down and somewhat betrayed by my team.

Perhaps I should have left well enough alone, but I called my insurance company today armed with diagnosis and procedure codes to verify whether or not chromosomal analysis is covered by my policy. A large part of why I called was to gather information, so we have it, God forbid this happens again. A large part of why I called was just to find out. 

I was told that it is NOT listed as an exclusion, but is instead listed as something that is paid for when medically necessary (which means that they will not pay for it as part of a routine screening, but will pay for it when it is needed for definitive answers – like after a stillbirth). I gave her a brief synopsis of our situation so she understood why I was asking and what I was looking for. Without any further questions from me, the service rep went on to give me some interesting information…

(Gracie was born at 0229 on August 1st, and we were told during the next 8 hours that my insurance would not cover the chromosomal analysis of the placental tissue and the out of pocket cost was $1700. We told our midwife that aside from an autopsy, we wanted any testing on me, Gracie or the placental/cord tissue that was covered by insurance. Pathology testing was done on my placenta, which determined that there were no visible clots in the tissue, and the amount of infarct. The fact that this was done absolutely means that they still had my placental tissue hanging around for a few days after the baby died.)

On August 3rd at 9:30 a.m., someone from the hospital called my insurance to find out of “chromosomal analysis on placental tissue” was covered by my policy; she was told that she needed to call back with procedure and diagnosis codes. 46 minutes later she called back with three different procedure codes (no diagnosis code), and she was told that all of the procedure codes were eligible procedures based on medical necessity. A second person made a THIRD call – on the same day at 1:30 p.m. with the same procedure codes – the only difference is that she had a diagnosis code. She was given the same information – eligible based on medical necessity.

I have been trying to figure out for the last 4 hours what the hell has happened. I have to wonder if someone was just guessing whether or not my insurance would cover the testing, and I feel like the ball was completely dropped after two different people got confirmation that the tests would likely be covered. I feel like they should have called and asked us what we wanted if they weren’t sure after the insurance company said that coverage was based on medical necessity.  It should have been OUR decision, not theirs.  Another part of me feels that this stinks of CYA, but the rest of me says that this theory doesn't make sense. I have no idea why they would feel like they need(ed) to do this, because we don’t blame anyone for Gracie’s death, and we were very clear about that. I don’t know what to do at this point. I really want to know why the hell they did not do the tests once they knew they would probably be covered, but I haven’t figured out the best way to do this, or if it is ultimately a battle that I should pick.  I am so mad and disappointed, but I have no idea where to direct it.  I really like our midwives and the doc that we have dealth with - I feel like the midwife who delivered Gracie did everything she could possibly do for us during the worst moments of our lives.  I hate to think that any of this falls on them, but I am not sure where is it really falls. 

The testing, or lack thereof, ultimately makes no difference in our outcome. Gracie would still be dead, regardless.  BUT…that chromosomal analysis could have given us a pretty immediate answer about cause of death. It would have given us a definitive answer to the T18/T21 question, which would allow us know if we could rest a little easier or have cause to keep our vigilance up during the next pregnancy. Instead, it will be a guessing game. 

#34 - Weekly list - 5th edition

As it turns out, I am having one of those ‘lost’ days….the kind of day that you have a million things on the To Do list, or at least a million things that could be done….and you don’t feel like doing any of them.  So onward with the procrastination in the form of my weekly list…

This week I am giving much thought to all of the things in life that I don’t understand (and probably never will), and wish there was reasonable explanation for.

• Why are the rough days usually so random?
  
  
• Why, in the big scheme of life, does it seem that bad things happen to good people far more often than the bad people?

• Why are babies and children taken from people who can care for them, love them and so desperately want them, but given to people who don’t want, neglect, abuse and/or kill them?

• Why do people steal Christmas trees?
  
  
• How in the world can anyone think that, at this point in my life, I have more spark and look happier than I have ever looked??? The person who said this is very dear to me, and very well meaning, but seriously….

• Why can’t men and women grieve the same way, at the same pace???

#33 - SADLY, SOME OF THE SIGNS COME TOGETHER

I was talking with the school psychologist at my last stop of the day yesterday; she looked at me and said (out of nowhere) "Hey, did you work with that little boy that died yesterday?" This, of course, made my heart skip several beats. I told her that I was aware of the incident, but didn't know anything about who the child was. Apparently the grandson of one of the secretaries in the building went to the same babysitter as the deceased child (the child died at the babysitter), and she had 'gossiped' some information to the school psychologist earlier in the day. She told me what she had heard, and I could only think of one kid on my caseload who fit the entire description. My heart skipped a few more beats. After two phone calls, I had confirmation. It was the child I had suspected, and I should have seen him the day before at preschool if I had not had the MFM appointment in the morning. Instead, on my way back to the office at the end of the school day, I drove past his babysitter's completely unaware that within the next 10 minutes he would be found lifeless there. :-(

I have not worked with him long, but that doesn't really matter - you quickly connect with most of the little ones you work so hard to help. Someone pointed out how profoundly he was delayed, both cognitively and physically (and the all-too-familiar 'maybe it's better this way....'), but that doesn't matter, either. All that matters right now is that he was someone's (only) child, and I can only imagine how much her heart is breaking. Over the next few days, if you all said an extra prayer for his mom, I am sure that she could use them all.

#32 - A DIFFERENT EXPLANATION

It has been a mad crazy week at work – it always is in the weeks between Thanksgiving and Christmas.  The good news is that I have managed to keep my focus over the last week or so and I have been successful in banging out a chunk of backlogged paperwork.  

Today was an interesting day.  I feel like there was a sign hiding behind every corner that I turned, but I can’t figure out what any of those signs were pointing to.  I ran into the grocery store for milk between clients today.  Near the entrance of the store, a sales associate was setting up a display of Styrofoam coolers - generally not something that one would take special note of, but there were two points of interest for me.  First, who sets up a display of Styrofoam coolers in Pennsylvania during December?  Second, since our visit to the funeral home to make Gracie’s arrangements, every Styrofoam cooler I see reminds me of her.  An odd correlation, I suppose, but one that I think will always remain.  The funeral home we used provides free services for any child less than one year of age.  Those arrangements include a ‘Polystyrene casket,’ which is really nothing more than a Styrofoam cooler.  The thought of burying my little girl in a Styrofoam cooler still makes me cringe – we opted to upgrade her to the fancy plastic model, but I will forever make the connection between my poor little Gracie and Styrofoam coolers.

After passing by the beautiful display of Christmas coolers, I was mowed down in the produce section by a runaway toddler.  Mom was in hot pursuit, and apologized profoundly in between shouting for the little girl to stop.  Her name was Gracie.  I walked about 20 feet further past two men who engaged in conversation.  I heard just a snippet of what they were saying - what I heard was ‘After Grace died, we….’   Seriously, what gives?  I’m not more than 50’ inside the store, and I feel like I have been bombarded with reminders of Gracie. 

There were other signs throughout the day.  I saw 3 old Subaru station wagons like the one we sent to Subaru Heaven a year ago – same color and everything.  A weird sign, but usually a meaningful one that at least one other person will appreciate.  I heard an ambulance call dispatched for a cardiac arrest of a 3  y/o boy – it was one of the only emergency calls that I heard dispatched all day, and he did not live.  I can’t help but wonder why that is one of the only calls I heard dispatched all day. 

Moving on from all of the signs.......   After much thought and debate, Jeff and I decided to schedule an appointment for a Maternal Fetal Medicine specialist, just to see what they had to say.  I was really just looking for a little more peace of mind for when we start TTC.  That consultation was today, and surprisingly, it left me feeling just a little better about things.  The doc did a very thorough review of my chart and asked me quite a few questions.  I learned that my placenta was very, very small.  I had been previously unaware of this, and I am a little disappointed that this information was not passed along during our previous follow up appointment with the regular OB staff.  By itself it is not an answer, and it not likely something that could have been identified during prenatal exams or testing, but I still wish that we had know about this before today.  This doc also officially confirmed that Gracie was growth restricted.  Prior to today, everyone has danced around the phrase ‘Intrauterine Growth Restriction.’ 

When it was all said and done, this doc told me that he believes Gracie’s demise can be attributed to either Trisomy 18 or Trisomy 21.  We have no genetic or chromosomal testing to go on, but he felt very strongly that all of the existing information points to one or the other.  He said that he was inclined to lean toward Trisomy 18 because of the higher mortality rate that Trisomy 18 carries compared to Trisomy 21.  Statistically speaking, stillbirth should not have happened to us, so I don’t put a whole lot of faith in statistics.  That said, it is a pretty safe bet that we will not have another baby with a Triomy defect.  I tend to regularly jinx myself, so we won’t talk about what the statistics say about the ‘other lightning’ striking twice. 

I am wishing that had known 18 weeks ago that insurances almost ALWAYS pay for genetic/chromosomal testing after a stillbirth (our midwife was told by someone that my insurance would not pay, and that out of pocket cost was roughly $1700), and I wish that I hadn’t been too emotional to give consent for an autopsy.  But, I do feel a little better after this appointment.  I have felt from day 1 that Gracie had mild Down Syndrome-like  facial features, but since we have no testing to prove or disprove my theory, we have been going back and forth between the possibility of placental clots and chronic (but well controlled) hypertension – with both theories coming up relatively empty.  I am very comfortable with the theory put on the table today – it fits a little better with all of the history (I had a Trisomy probability score of 1:47, but we opted to not have an amniocentesis), and it means that I don’t have to always wonder if there is a clot forming somewhere in my placenta…  We are going to proceed with daily baby aspirin during our next pregnancies just in case, but I am pretty comfortable in feeling like I may have a better explanation…