December...

...is such a difficult month for mourners. The cold does not do much to warm the heart. The sunshine is great, though--it's so good to be back in America where the sun shines even when it's cold! I have missed the sun, which is evident by my ghostly complexion! Plus, it's Christmas time, and there will always be someone missing.

This past weekend, which happened to be Jonas' 9-month angelday, we spent in Sidney visiting my family. I wanted to decorate Jonas' grave all Christmas-y before the 25th so it was a great weekend to do it. My mom and I twisted some pine branches together and made a nice little bouquet. Zac, my dad, and I took it out to the cemetery. We saw some deer tracks all around the grave and the cemetery--it was beautiful!


Later that night we attended the worldwide annual candle-lighting ceremony in honor of children who have died. The painting of Jonas was shown on the big slide show along with many other children who have died in Sidney, dating back to the 1950's. We also went up to the front and set a candle down and received a rose when his name was called. It was very sad looking at all those who have passed away, especially since many of them were in my graduating class. It's so weird that they're not here anymore. Zac and I always talk about how much worse things could have been with Jonas. Some people might think differently, but we are very glad that he passed away before he was born as opposed to dying from SIDS or anytime after birth. I think that would have been much more difficult.

Diagnosis

It has been a very long journey, but I finally have a diagnosis that explains everything I am feeling. Last week I had several blood tests done and this week I was informed by my doctor that I have hypothyroidism. I never thought I'd be so happy to have this "disease"! But for me it means that I have some answers and now I can find solutions. I literally spend hours researching everything in my life. I love being well-informed about everything that has to do with me and my family, and a major part of that is health. I honestly do not trust doctors at all, and the only thing about them that I am thankful for is surgery and other life-saving interventions. The reason why I do not trust them is because it seems like they really truly do not know what they're talking about most of the time. I can find out for myself what's wrong with me and then find out which medications would suit me best and even the dosage I need. All from reading a freakin' book and other publications online. Craziness. That's how I discovered that just MAYBE I had a thyroid problem.

Last week I went to a doctor with prepared notes in hand. I told him what tests I wanted done, all my symptoms, and which medications I wanted and which I did NOT want. I knew exactly what he would say to each of those, so I also had responses prepared. It is quite humorous to me that a book can foresee what a doctor will tell you, and many times the doctors are wrong. For example, it is essential to get all 5 thyroid tests--not just the TSH. However, doctors will fight you over that. You have to stand your ground, because the accuracy of the TSH test is not up to par. And if you do have a thyroid problem, they will put you on a medication (usually synthroid) that is not the most optimal medication. Most people do even better on T4 AND T3 medication. Synthroid is T4 only. Just a little tidbit of info that is extremely boring to everyone but me. ;)

The doctor refused to test my reproductive hormones, because he said that if they were off-balance then I would not be ovulating. That's just simply not true. A little research can tell you that. I didn't fight that one, because I felt that the thyroid thing was more of a possibility.

I also wanted my cortisol levels tested because of the amount of stress I've been under this year. He told me that if they were messed up, then I'd be so sick I'd be in the hospital. Also NOT true. Adrenal glands will continue to function at very low levels just to get you by, but you are very unmotivated in every area of your life.

I was very emotional that day, and of course I had to tell him about Jonas so I sat there and sobbed in front of this dude I'd never met. The look in his eyes is hard to forget. It was such a look of pity. He basically told me that what I REALLY needed was to go to therapy because it had been 9 months and obviously I was still struggling. What? It's ONLY been 9 months. Silly dude. It's called grief and it will never go away, but it will settle down some. The symptoms I have are different. I've felt so different for so long now. Like something's wrong. I'm not the same person, and I don't really laugh anymore. When I do, it's because I've been drinking or it's being forced to some extent. I have lots of other symptoms, but some are a little too personal. I'm just not who I used to be. I do not cry over Jonas very much. Once in awhile, I do, but hardly ever these days. I cry because I am simply unhappy, but I can't figure out why. I see so much good in my life, but I still cry. It's as if there's a dark cloud hovering around me and all I want is to see that happy stuff clearly-- I know it's there!

So because I was so emotional and guys get scared of crying girls, the doctor said he would do all those tests I requested except the sex hormones. woohoo! When my tests came back, the guy on the phone said everything was fine for the most part (what does that mean?) except the thyroid. I thought, "HA! I WAS RIGHT!" It's not me...I am truly sick. I'm not crazy and uptight and frigid...I'm just sick. I have looked into the adrenal glands some more, because many times thyroid goes hand in hand with adrenal glands (stress hormones). I fit the description perfectly. There is even a test you can do at home to determine if one of the adrenal hormones is low--go into a dark room with a mirror and a flashlight. Shine the light on your eye from the side of your head. The pupil should stay small, but if something's wrong then the pupil will go from small to large to small--as if it is struggling to stay small. So I did this...and guess what? My adrenal glands are worn out and I am sick again. So the next step? Well, since I won't have insurance anymore as of next week because Zac is separating from the military, I am going OTC (over the counter) and ordering from a highly recommended company (don't worry, I researched it haha) called Nutri-meds. I am very excited to begin the medication and see if my life transforms. Please wish me the best on my new medication journey! And if you're struggling with moods of any kind, please read this book. It may have saved my life in many ways, as it was what made me think, "MAYBE my thyroid is screwed up."

Saddish

Today is just one of those awful days. Everything makes me want to cry. People say the wrong thing to me and that's it--my entire day is ruined. Right now I am struggling with my own diagnosis. Do I have postpartum depression? Are my hormones screwed up? Maybe it's my adrenal glands. Is it just plain old grief? OCD? Anxiety? Regular depression? Or is it because I have to work tonight? haha...I don't think it's PPD because it's been 8 months. Who knows. I'm about to start taking a bunch of supplements and let's hope that helps.

I'll leave you with something happy.


Josiah and me
2007

Answers

It's very difficult accepting that there was no cause of death. No KNOWN cause. Believe me, I've gone over every possible cause in my head. Was it my awful diet? All that junk food full of artificial coloring and all sorts of fake toxic ingredients...But I ate that way with Josiah too, and he made it. Maybe it was because I tended to wake up in the morning on my back--and all the books say you have to sleep on your side, which I did, but I always ended up on my back in the mornings. Maybe it was the rose hips supplements I started taking to "naturally" induce labor so Jonas would come when my mother-in-law was staying with us in Germany. But lots of hippie preggo women take those and their babies are fine. Maybe it was all the ultrasounds the Germans did--one at every single appointment! Maybe it was the doctor's fault. Just two days before he passed away, approximately, I was given a strep B test (similar to a pap smear). Maybe he hurt my baby. Maybe it's because I was so busy with Josiah that I didn't really talk to Jonas...I didn't pray for him as often as I did for Joss...

NO NO NO. It was nothing I did.

I recently heard about a doctor whose main purpose in life is researching stillbirth and umbilical cord accidents. He's pretty amazing. He is one of the only doctors who is actually TRYING to prevent late-term stillbirths. He believes most "unknown cause" deaths are due to cord-accidents. There are several types of cord accidents. It is not something that happens just like that. It is something that is gradual. Because of this, it CAN be caught if a doctor knows what to look for. There are signs in the ultrasound of the umbilical cord, and there are signs in the heartbeat. Most doctors are afraid of scaring their pregnant patients, so many do not mention kick counts. And most very pregnant women do not want to hear the word "stillbirth". I didn't. But I learned the terrible, awful way that knowledge is so much better than ignorance. Women need to be more educated! It can happen to anyone, even if you'd had a perfectly healthy previous pregnancy.

So I called this guy. His name is Dr. Jason Collins of the Pregnancy Institute. He wants to hear from anyone who has experienced what I have. He asked about my story, and I told him. I told him how I WAS concerned about lack of movement, and how I researched it online and saw "decreased movement is normal in the last few weeks of pregnancy." And how I felt relieved at that. I thought I was just paranoid. He was so upset that so many women are finding that statement about decreased movement online. He said it's just not true. I emailed him all the ultrasounds I have of Jonas. He emailed me back right away and pointed out the umbilical cord in one photo. He told me how it showed "cord looping" and in his opinion, that was most likely the cause. That ultrasound was around 20 weeks, I believe.

So that was kind of a blow to my heart. It was so easily detected by him, but wasn't detected at all by my doctor, who did about 10 ultrasounds on me. Don't get me wrong, I'm not blaming my doctor at all. He was a very nice guy. Jonas' heartbeat was monitored for 30 min. at 4 prenatal appointments--my last 2 months of pregnancy. His heartbeat would go down, and then way up, and then stay steady. This happened a lot, and the midwives would make me drink a ton of water. I hated it. They were never concerned, just made me drink water to get the heartbeat normal. At every appointment. So was that not normal? Perhaps it could have been detected early on, and I could have been induced.

I won't get into the should-a would-a stuff. Things happen in life for a reason. And like I've said before, there is a completely new side of me now. I trust that God will use it for good.

So The Pregnancy Institute (www.preginst.com) has a program where you can set up a fetal monitor at home. You record the heartbeat for 30 min. each night during the last 2 months. The results are sent to Dr. Collins' blackberry and he knows what red flags to look for. I am very interested in this for my next pregnancy. The downside? It costs $2000 for the equipment. Perhaps when the time comes...we'll see.

Here is the ultrasound of Jonas. Note the umbilical cord and how it is twisted. It's the long thing that runs across where his mouth is. Please don't be sad. I'm trying to educate, here. :)



For more information, go to www.stillnomore.org

New Job, Clean Slate

Tonight was my 2nd day at my new job. I haven't worked in over 4 years...well, worked a paying job anyway. It's very strange getting to know my coworkers. We talk about kids, where we're from, likes and dislikes, etc....all the normal things people talk about with acquaintances. Except that I have a secret. In a way it's nice not being known as the girl whose baby died. It's nice being a normal girl with a husband and a 2-year old...a seemingly happy normal person who isn't grieving. Of course that's not who I am, but it's relaxing to pretend.

Eventually, my secret will probably come out. I'm not sure how. But things like this always do come out unless you flat-out lie. Questions like--did you have a natural birth? (yes women do talk about this) My answer, "With my first son, I had pain meds and was induced, but with my 2nd son it was natural." Wait...2nd son? oops...there goes my secret. I just hope that when it does, my coworkers aren't super weird around me.

To Write Their Names in the Sand

I've been so excited to share this photograph! When Jonas passed away in March, I stumbled upon this organization called "To Write Their Names in the Sand". The woman who started this also lost her baby. She and her family live in Australia near a beautiful beach with beautiful sunsets. She invites everyone who has lost a child to submit their name along with a memorial, and she writes the name in the sand and photographs it. The website always takes my breath away...so peaceful and so wonderful for grieving parents.

Here is the direct link to his memorial on her website: http://namesinthesand.blogspot.com/2009/09/jonas-elliot-phillips.html

It has been difficult for me to get Jonas' name submitted, because they can be overwhelmed by the amount of names submitted. It took me 6 months to get his name submitted! But the wait was totally worth it.

A Bit Tainted

It's true that I am a changed person. The day I held my lifeless baby in my arms was the day when I became somewhat of a different person. It's only natural. It's not possible for someone to be unchanged after experiencing a stillbirth. How can they? When you're pregnant, your baby is a part of you. Not only the flesh and blood, but the heart and soul too. The beauty of birth is bringing that life into the world. When your baby dies, it's like that part of your heart and soul dies as well. I believe God is the only one who can fully regenerate that portion of your heart, if you let Him. I like to think that I've let Him, because I feel like I'm doing very well most of the time. There are certain parts of me that are hardened, though. It's in the questions I ask.

"Why do women who put their baby at risk by drinking and smoking go on to have a perfectly healthy, living baby? Why did this happen to me, when I was so careful?" Not that I think ANYONE deserves pain like this. I don't.

"Why did he have to die in my womb a week before his due date? Would it have been any easier if I had miscarried in the beginning?" Losing a life is losing a life, no matter how small. I just think I had longer to become attached.

"Was there a reason he died so late in the pregnancy?" I had to bury my son and I'm only 26. Funerals suck. I planned my son's funeral the entire week after giving birth. If you've given birth, you know what postpartum healing is like. Yet I am glad that I have his grave to visit whenever I go to Sidney. It's healing for me.

"Why couldn't my body have realized my baby had passed?" Instead, I had to wait a week to find out, while enduring braxton hicks contractions. Instead, after I gave birth, my milk came in which is very painful. I had to get on a 10-hour flight with a sick 2-year old and ice packs stuffed in my bra to help with the pain of drying the milk. SUCKED. It was such a sad feeling...milk for a baby who wasn't there.

"Why do I still have a postpartum body?" With Josiah, I had a great advantage because I breastfed him, which burns tons of calories and helps your body get back to normal quicker. After I had Jonas, the weight seemed stuck. I did lose 13 lbs. which have managed to stay off, but it really sucks having 20 lbs. of baby weight and no baby to show for it. Not only the weight, but the stretch marks as well, which will eventually fade with time.

"Why don't women know more about the possibility of stillbirth?" I didn't think this could ever happen to me. I'm a very healthy young woman. They say if the pregnancy lasts past 24 weeks, then if the baby is premature it is possible for it to live because of medical technology. I thought I was long past the safe point. I didn't realize that my baby COULD pass away...for no reason at all...no medical explanation. Doctors don't tell pregnant women these things because they don't want to scare them. I wish I would have known. Because then I wouldn't be tortured by thoughts like, "If only I had done kick counts, then maybe I would have noticed decreased movement, gone to the doctor right away, and Jonas would be here today."

Such dark thoughts these are. That last thought is the darkest of all my thoughts. That maybe I could have saved him. I did notice decreased movement, actually. I researched it online and found several stillbirth websites and then an article that said, "decreased movement in the last few weeks is normal" and it was that line that put me at ease and made me think I was just paranoid. Nope, it was my mother's instincts kicking in. Women need to know that there is no such thing as being too paranoid at the end. And yes apparently kick counts are super important. *sigh*

I feel more anger these days. I don't have patience for selfish people. I hold grudges. It's hard to be happy for people. Perhaps I have become a bit selfish myself. I am unable to comfort anyone else who gets too emotional about what happened to Jonas, because it is hard enough to allow myself to heal. But I do appreciate those who are willing to talk about Jonas to me, because I refuse to "sweep it under the rug" and pretend like I don't have two sons. I don't usually cry when I talk about what happened anymore, so maybe that means that I am coming along well. :)

Thanks for letting me share the hardened parts of myself.

More Memorials

I try to keep Jonas' memory alive in any way I can, so I wanted to share a few examples of some things I've done. These are mostly things that other grieving women have offered to do for anyone. I always jump at the chance to share Jonas' name in these ways.

Here is his rock in a woman's rock garden for babies and children:Here is a picture of the rock garden all lit up, along with a balloon release with all the babies' names written on them:
The next memorial is a lantern release that a woman offered to do. She wrote all the babies' names on the lanterns--112 names in all! You can see Jonas' name here:And last, Jonas' name was included in a list of angels in honor of Pregnancy and Infant Loss Awareness Day, which was October 15th. She also lit a candle for him. His name is in the first column towards the middle, written in dark ink. http://2feetonearth1inthestars.wordpress.com/
One of these days, I'd love to do something similar for anyone who has had a miscarriage, stillbirth, or who has lost a child in any way. I'm thinking that I'll do something for Jonas' first birthday in March. I'm not sure why, but these little things really do help me heal. :)

Memorials

The wonderful members of my family on the Johnson side all gave money towards a plaque in Jonas' memory at the Angel of Hope memorial in Sidney. I visited Sidney last weekend where I was able to see it for the first time. I think it's amazing! It's nestled in with many other babies/children/loved ones' plaques. The little garden itself is very peaceful. I think it's a great place to go remember Jonas if it's too difficult for some to visit his grave.

So, thank you to all of my family who helped purchase this plaque!

"Oh you had a baby?! How old?"

So far, this dreaded question has only come up twice that I can recall. The first time was when I was at the dentist about a month ago. I had to fill out the health questionnaire before the appointment, and one of the questions was "Have you been under the care of a physician in the past year?" To which I replied, "yes". Then I didn't know if I should put "pregnancy" after that or leave it blank. If I put pregnancy, then I know the questions will come up....but then again if I leave it blank then they'll ask why and then I'll have to say pregnancy and then the questions will come...Of course I could always put "pregnancy-stillbirth". But that is automatically awkward. I ended up leaving it blank.

Sure enough, the nurse comes in and asks me about the form. She asked why I was under the care of a physician. I winced, and said pregnancy. Then my heart started beating out of my chest as she asked, "Oh you had a baby?! "Yes." "Boy or girl?" "Boy." At this point I'm hoping she'll just stop with the questions, but no. "How old?" I didn't say anything for a second, because I wasn't quite sure what to say. So I just said matter-of-factly, "It was a stillbirth." She said absolutely NOTHING! Not even, "Oh I'm so sorry!" Finally she came around from behind me and asked while she was working, "So you had a miscarriage, or what?" I realized that she was from the Philippines, so I thought that maybe she just didn't know what the term stillbirth meant. I told her it was a stillbirth, which was a late-term thing. I tried very hard to keep the tears inside, and I succeeded.

My second experience was a week ago. I was getting my haircut, and the girl cutting my hair was getting freaked out by the massive amounts of hair I was losing. To ease her concerns, I told her it was just postpartum hair loss (which has lasted awhile for me, but is now ending thankfully!). Right when I said that, I regretted it. She asked, "Oh how old is your baby?" Honestly, I didn't want to go through it again because I was already nervous about my drastic haircut. So I lied. I said, "6 months." She asked, "Boy or girl?" And I said, "Boy." It actually felt a bit nice to say that--like how awesome it would be if that were true! But then it also was pretty depressing...because it is so not true.

It's definitely an inner battle for me when these questions arise. I've figured out that if it's someone who I will never see again, then it's not worth going into. But if it's someone who I know well or will be spending lots of time with, it's better to just tell them. I think that eventually I will get to a point where when asked how many children I have, I will tell them, "A 2-year old son, and a baby boy in Heaven."

The 6-Month Angelday

September 12th was Jonas' 6-month "angelday", or "angelversary" as some people say. It was especially difficult for me because I felt a huge sense of loss, even more so than usual. Six months is when most people start feeding their babies solid foods. It's a milestone. It's the first of many, many sad milestones. The one-year is going to SUCK....the 5-year, 13, 16, 18, 21........not to mention every year on his birthday.

I was doing okay, even through sadness, the weekend of his 6th month. Then Zac and I decided to go to church and OF COURSE that's the day they decided to do baby dedications/baptisms. They brought all the parents and their babies and lined them up in the front. The pastor talked about how babies are a gift from God and that the birth of a baby is such a joyous time in parents' lives. I totally lost it. Tears were flowing no matter how hard I tried to stifle them. My throat got all tight--you know the feeling--and I was hoping nobody noticed. If they did, maybe they thought I was just so happy for the parents and their babies, haha....Zac was struggling too, I could tell. I almost got up and left that part, but right when I decided I'd leave, the ceremony was over.

Unfortunately, the birth of a baby is not always a joyous time. In fact, it could be the worst day of your life! It could taint you forever. It might even leave a deep, dark hole in your heart that will never be filled....Yes those are the real facts of life. Not fair at all...

I bought a baby spoon, tied a blue bow on it, and gave it to my mom to leave for Jonas. My mom said that someone also left a little winnie the pooh bear. Just wanted to say thanks to whoever was so thoughtful!

Attempting to Organize my Thoughts

I am in the process of moving our memorial page from myspace to this blogspot, simply because it feels more like a journal-type page and journaling is what I really want to do. I will still leave the myspace page up, but this is where I will do the most writing and sharing. I haven't really felt like I can easily open up about my grief on public forums because sometimes it is just plain dark and depressing stuff that not many people want to read. So I guess what I am getting at is that this blog will not always be the happy healing blog, but rather the dark journey that grief is. I feel that my journey has been a mostly hopeful and healing one, but some days it is not like that at all. Many times I want to share the horrible raw details with the world because sometimes it just needs to be talked about. Since this is a journey, though, there will be so many wonderful things that I will share as well so please bear with me. I hope to really start opening up on here which means writing more often than I have in the past.

Thanks for reading, and thanks for allowing me to truly open up about things...

The Day We Found Out

Little Jonas Elliot was born on Thursday, March 12^th at 12:05 p.m. However, he had already entered into God’s hands about a week before. The umbilical cord was wrapped around his neck, which is believed to be the cause.

Zac and I went to my prenatal checkup on my due date-the 11^th. They were unable to find his heartbeat, and an ultrasound revealed that he had passed away. I’ve been going to a German hospital, so as you can imagine, it was frightening seeing all these people crowded around me during the ultrasound and not being able to understand them. Then they all got quiet and the doctor said, “Mrs. Phillips, the baby is not alive.” I will never forget that moment or the way he said those words. I covered my face with my hands and broke down hysterically. I kept asking outloud, “Why now? Why not in the first trimester?” (not that that would not be hard) “This can’t be happening!” “Why now? Why now?”…….I just kept shaking my head no…like this wasn’t my life…this only happens to other people. I knew the worst was yet to come. I would have to go through labor—all that pain—only to have to say goodbye to my baby in the worst possible way. I couldn’t imagine what it would be like to see him and hold him—it seemed scary.

I was induced that night. The German way of induction is different in that it can take up to 3 days before you actually have the baby. I just wanted to get it over with. Lots of people were praying back in the states, and those prayers were answered. It took just 16 hours of labor before he was born. For those that knew, I had been planning and preparing for a natural birth. I decided that I was enduring enough emotional pain, and would take meds if I needed them. Towards the end, when labor was very difficult, they talked me into an epidural. I was going through the worst of the contractions while they were preparing the epidural, when I felt a horrendous need to push. My water broke just then, and I began pushing naturally. I would just like to say that I have never endured such physical pain in my life. It was the hardest thing I have ever done. Zac said he’s never heard such “primal noises” before! (Zac was so great throughout the entire thing—he helped me get through it all) I can’t really describe how intense it was for me. I will never forget that moment. Jonas came quickly though, and after he did, we broke down and cried. I remember hearing the sobs of the German midwife who ran out of room after he was born. I think it was very difficult for her. Zac cut the cord, and we held our little boy and just cried. He was so perfect and looked just like Josiah when he was born, except he had little curls. He was 7 lbs. 1 oz. and almost 23 inches long! He had Zac’s nose and hair color, just like Joss. We spent a lot of time with him and said our goodbyes. We felt very peaceful about it because we know that he is happy and safe in Heaven, and we know we’ll see him there someday. God really gave us strength that we never knew we had.