Strollin’ to Fight SIDS

Join us June 13th!

Strollin' to Fight SIDS.

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As of yesterday I was 28 weeks.  Last week I had a “routine” OB appointment, and some of what my OB discussed caught me by surprise.  The visit prior, he had been talking of a c-section at 39 weeks (July 7th) and that he did not want to take our baby boy earlier that this. However, last Thursday, he obviously had changed his mind.  Perhaps based of my prior Maternal Fetal Medicine ultrasound, I am not sure.  Anyhow, the plan has changed, and it threw me for a loop.

He performed another ultrasound and confirmed that the placenta previa was still present over the cervix, and also he noted that the hematoma (blood clot) was still there as well.  I have had subchorionic hematomas with my prior pregnancies, but they had always reabsorbed by this stage of the pregnancies.  But not so this time.  Little boy was active and kicking, and his heart rate was good.

My OB then said that I am to stop lifting ANYTHING at all (which makes work hard), and there is to be absolutely no exercise, walking, etc.  (So I will be sitting instead of walking during our June 13th SIDS event) Luckily he didn’t tell me to stop working, as we need the money. Starting May 11th, I will be starting betamethasone injections (steroids) to prep baby boy’s lungs for a possible early delivery, as I am at high risk of sudden bleeds.  He said our initial goal is to get to 32-34 weeks gestation for best outcome, and if things are going well, to plan on a c-section at 37 weeks (the week of June 22).

Anneliese would be turning 3 on June 21st.  I really didn’t want their births to be in the same week, but maybe it is a sign from above.  I want what is best for baby boy, whatever that might be.  The close proximity of the dates is a bit tough emotionally, as I really didn’t want another June baby.  I didn’t want baby boy to be approaching Anneliese’s death date at the same age she was when she died.  I realize that all of this is out of my control.  It is hard not to stress, but also “normal” to do so after all I have been through.  Just when I needed it, a scripture presented itself to me online:

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” – Philippians 4:6-7

Seeing this scripture made me refocus, and cast away my worries.. even if just for the time being.  God is good, and I must have faith that this baby will have a different outcome, even if things are not working out the way I planned.

So I continue to pray that he will be ok.  That the doctors will be guided by His hand. In the end, all that will matter will be that I will hold my sweet son in my arms and hear his sweet cries. That the scars on my abdomen, and the scars on my heart will heal as best as they can.  But those scars will be a reminder of what was lost and what was gained.  And I pray that we will have our sweet boy for many years to come.

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26 weeks today

Today marks 26 weeks. I am almost in the third trimester. July seems so close, and yet so far away at the same time. Although I feel him kicking and bopping around inside of me, I sometimes wonder if this is really real. Will I get my happy ending? Will I be able to bring him home, and watch him grow? When I feel fear seep in, I lean on my faith, and pray. Worrying won’t change the outcome anyway.

Even though I have never had more than an early miscarriage, there is that fear of something happening during pregnancy. I am most fearful of bringing him home, and of nap times though of course, because of what we have been through. However, today in the online SIDS community, tragedy struck yet again. Another SIDS mom who was due with her rainbow baby, actually 1 week overdue, went into the hospital only to discover that her baby had died within her. This terrifies me. I have had to calm myself by praying and leaning on God. But of course one can’t help but question God and ask “why”. Why would He allow tragedy to strike a family who has already dealt with enough. I know the answers aren’t to be found on this side of heaven. My heart aches for this family, and the devil tries to instill the spirit of fear within me. But I won’t let him win. I am praying that we will have a happy ending. As happy as it can be after having a member of your family taken from you forever. I find happiness and joy in everything now. I am so thankful for the good things that I still have.

Easter was hard. It was joyful, but still difficult. We visited Anneliese’s grave, and placed a few plastic eggs, and a bunny next to her stone. The hormonal pregnant me bawled. I still picture her as a baby. I still gravitate towards baby girl clothes in the stores. My baby girl who I will never get to see grow. She is frozen in time. Occasionally I think of the age she should be, but for the most part I still picture her as the age she was. The mind still questions whether this could really have happened to us, even years out. I think of her younger brother and wonder if he will reach milestones that she did not.

I pray that he does.

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Almost 24 weeks

I haven’t been writing much. I guess because sometimes it feels like no one is listening. I am almost 24 weeks pregnant with my rainbow baby boy. He still does not have a name.

I can feel his kicks, tiny, but mighty all the same. The miracle of life. I realize what a blessing this pregnancy is, and I hesitate to complain at all, for I know SIDS moms who have lost their first baby, and who have been unable to conceive again. That being said, I realize with this pregnancy that I feel a sense of completion. He will be my last. With prior pregnancies I always felt a melancholy that this might be the last time that I felt a baby kick within me. But with this pregnancy, I don’t feel that sadness. I just feel thankfulness to the Lord; that I have reached such a state of happiness despite an emptiness that can never be replaced. That I no longer cry every day, and feel hope for the future. And I feel the toll that 5 pregnancies have placed upon my 38 year old body. My legs cry out in pain, as sciatica caused by pregnancy and a pelvic shift send hot pokers down my leg. I couldn’t be any more high risk: post thyroid cancer treatment, no working parathyroids, blood clotting disorder, and now a placenta previa, diagnosed when he was 20 weeks gestation. Yes, he will be my last.

He will be my last, not only for the reasons mentioned above, but also I feel that God is telling me that it is time to stop. I pray that he will survive. For the most part I have faith, and lean on God, and feel that he will survive. But then worry and fear sometimes eek in. It’s hard to keep them at bay when you have been through such a dramatic loss as we have. It’s only human to fear it happening again. I know that it does happen twice, but rarely. But it doesn’t matter how rare, if you are the one who lightening strikes twice. But Dr. Kinney and Dr. Goldstein, some of the most prominent SIDS researchers in the world, have assured me that he will likely be ok. That we should proceed with the assumption he will live. I am trying to keep the faith.

Other than just praying that he will be ok, we are taking as many steps as we can to assure that we avert anything preventable. Upon his birth, he will have an EKG performed, which we may also repeat about 3 days later, as long QT syndrome is not always evident at birth. Full genetic tests are already done by my state, and Dr. Goldstein said that Washington State testing is more than adequate. Also soon after his birth we plan to have full hearing tests done, beyond just the normal pass/fail, as there are studies linking slight hearing deficits in the right ear with brainstem issues. I hope everything will be normal. I also plan on some type of monitor for my peace of mind, although I know these don’t stop SIDS.

On top of all of this, we are still proceeding with our annual SIDS 5k, Strollin’ to Fight SIDS on June 13th. Perhaps I am a bit crazy for continuing, but I cannot forget the event honoring my daughter. I have been very active in promoting SIDS research both via my walk, and also by supporting other researchers, both locally and those in Boston. I pray that our event will garner the support it needs to make it successful. I am still hoping to find some volunteers as I will be very close to my due date when the event takes place. I have a feeling that I might end up with another June baby. I am not sure how I feel about this, but everything will be as God wills. I feel nervous about the idea of him sharing a date near Anneliese’s birth date, and for nearing October at the same age as she was when she died.

Here he is:

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Sad and stressed

Today I am feeling sad, and stressed. Outside it is a gray, rainy day. Inside, my mood matches the weather. Today I am missing her badly. Sometimes it seems like the world has moved on. That no one cares that babies are dying of SIDS. That my daughter should be turning 3 years old this coming June. I have had no luck in finding someone to run our event. No one cares.

We put our faith in God and took a risk trying to conceive. We prayed about it, and felt that we were being told to proceed. Don’t get me wrong, I am glad we did. I am very excited about our baby boy. But I thought for sure that we were due a break in the financial department. That break has yet to come.

I am working 5 days a week, and getting more and more pregnant every day. My husband was unemployed, but found work as a bus driver for the school district. After the 2 month training period he found out that there were no permanent routes available. So he has been placed on a substitute driver list. He had spoken to other subs who assured him that there was a ton of work, and that they were called in to work almost every day. Of course that has not been the case for us. He is barely getting any hours at all. We are barely able to pay our bills every month, and now next month’s paycheck will be even smaller. You could say that this is stressful. That would be an understatement.

I don’t see any end to the financial stress. When baby is born, I would love to be able to spend more time with him and the girls, and less time at work. But it’s not looking hopeful.

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16 weeks

It has been a long time since I have posted.  I am now 16 1/2 weeks pregnant.  I have found out through testing that we are having a baby boy! The preliminary blood tests (Progenity) all show that he is healthy.

When we first found out, I was shocked, yet given my oldest daughter’s prediction of the gender, not shocked at the same time.  Sometimes there are clear signs from above that we just cannot ignore.  My daughter correctly guessing the gender before she even knew I was pregnant is one of them.

Even though I have faith, it does not always ease my fear.  Recently I found out about a mom in the online community who just lost her 2nd child to SIDS.  Her first child had died the year before, and her rainbow has died now too.  When I heard this news I cried for her.  I also had a panic attack for my baby boy growing  within.  What if I don’t have a happy ending either? My daughter has been crying for her baby sister, and fearing that her brother will die too.  There is no easy way to comfort her when I cannot comfort myself.

Another point of sadness is that which I feel regarding our SIDS charity event, Strollin’ to Fight SIDS.  For two years now we have hosted a walk for The CJ Foundation for SIDS every June.  Last year we made over 15,000 dollars for SIDS research.  This year my co-sponsor is busy with school, and I will be due less than a month after the event would run.  Last year I was very stressed running the event almost solo, because my co-sponsor was so busy.  I know I cannot handle the stress this year when pregnant, unless I find some help.  Never-mind the fact that babies don’t always listen to their due dates, and I can hardly run an event if I were to go into labor!

I have tried emailing last year’s SIDS family participants looking for help, with no reply.  I have tried spreading the word on social media, both via The CJ Foundation’s page, and via other SIDS groups and pages. No such luck.  It makes me sad that someone isn’t willing to step up and join us in the fight against SIDS.  That people only want to participate, not actively run an event.  My page views on Facebook are dismal.  Unless God comes through with a miracle, Strollin’ to Fight SIDS is off.  And if we don’t hold it this year, I see little hope of reconvening next year.

Please God, bring me a miracle in this too.  Or if I am not meant to continue Strollin’, please find another avenue for me to make a difference in others’ lives.

I know that abandoning the event for the health of this baby is not abandoning Anneliese, but yet sometimes it feels that way.  But I must do what is best for baby boy.

Praying for the answer to come.

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Grief changes with time, and yet it doesn’t

Grief changes with time, and yet, at the same time, it remains the same.  Losing a child doesn’t really get “better”. Holidays are particularly tough.  They are a time when family should be together, celebrating.  We expect of course, as the years go by, that there will be family members absent from the dinner table.  Family members who lived a full life, and then who have passed on to the other side.  However, the empty seat that represents child loss is worse, because it is unexpected.  We expect with time, that some of our loved ones will leave us.  We never expect, and will never get over, the loss of a child.  It goes against the natural order of things.  It just shouldn’t happen.  And yet it does.

Today we went to visit Anneliese’s grave for the first time since October.  We brought a Christmas greenery arrangement, and a balloon that said “Merry Christmas.”  Her grave was dirty; there were leaves, seeds from the maple above, and dirt on her gravestone.  All I have left is to clean her stone with a baby wipe, and notice that the stone is already changing colors with time.  Permanently changing.  Another reminder of how long she’s been gone.

Worse was the fact that someone stole an item that we had placed on her grave; a pink glass solar flower on a stick.  The kind that people put in their gardens.  It was one of the “permanent” items that we leave all year round.  Not anymore.  I cried when I saw it missing.  When I realized that its theft was a reminder of the depravity of the human soul.  That exists in some people’s souls that is.  The most evil of evils. How can someone live with themselves, after stealing from a baby’s grave? I am glad I don’t have to know.

I shared the photo of her grave on social media, and I guess I shouldn’t have been surprised at the lack of responses.  I have noticed, with time, that the “supportive” comments beneath have drastically dwindled.  The comments such as “praying for your family”, “thinking of you” etc, etc, have all but disappeared.  Only two responses, and those from baby loss moms.  I think this is another sign that society thinks that there is a set time for grieving.  These people don’t understand that I can still be happy, and yet sad, at the same time.  They don’t understand that the baby growing within my belly does not negate the pain of the loss of Anneliese.  That the baby is a new beginning, and that I should be happy.  But what they luckily don’t realize is that this pregnancy is not a joyride for me.  It couldn’t possibly be after what I have been through.  Panic attacks have been my unwelcome friend.  That my oldest daughter started crying for her dead baby sister the other day, and I looked at my belly with panic, and thought to myself: “How can I do this to my other children again? What if this one dies, and I put her through loss again?”  What was I thinking?  A rainbow won’t “solve” this hurt.  And a rainbow will bring great fear.   For how can you stop SIDS when you couldn’t stop it the first time? What if there is something genetic with my hubby and my DNA? I feel a sick fear in the pit of my stomach.  I pray for it to go away.  I pray for the Holy Spirit to comfort me, and let me know that all will be ok.  But I have felt no answer.  No confirmation.

Please ease my burden God.  Please answer my prayers.  Please comfort my daughter, as we seek counseling for her tomorrow.  Please help this baby grow, and to be healthy.  Please allow the brain to develop properly, so that we do not have another loss.  Please let this baby be a forever baby.  Please keep my fears at bay, and help me to hear Your voice.

I need comfort, and I feel so alone.

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Emotional disconnect

Today I am officially 9 weeks pregnant.  Yes, not very far.  However, I am already showing.  Last week I had an ultrasound and saw baby’s heartbeat.  I would have thought that I would have felt something upon hearing that joyous noise.  I thought I would have shed a tear, or felt overwhelming happiness.  And yet I did not.  I guess that it is a protective measure.  I feel an emotional disconnect from this baby.  As if it’s not really real, and I am not really pregnant.  As if I am trying to shield myself about the fact that I could lose this one too.  I guess it’s just a defense mechanism, but I wish I could feel something.

Already I have had a few moments where I had a panic attack.  Worrying that there is something wrong with this baby.  That SIDS will strike again.  I try to push these thoughts to the back of my mind.  I pray every day that this baby is healthy, and that it doesn’t die.  The naive bliss of pregnancy is gone forever for me. Not that I really was that blissful before.. but this is worse. What will I be like once the baby is here? I have 7 whole months to come to terms with this.  How will I get through these months? How will I get through the first year of life? Will I get through it?

I hope

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6 weeks

Today I am 6 weeks and 2 day pregnant.  No, not very far, I know.  But the first trimester weariness has really set in.  If I am not at work, then I take at least one, if not two, obligatory cat naps.  If at work, I just find a way to push through.

This is technically my 5th pregnancy.  After 5 times, my body knows what to do.  I am already getting a bit of a tummy.  Of course it doesn’t help that I was a bit hefty to begin with. I am trying to change things up and do things differently this pregnancy than I did with my prior 3 pregnancies.  (The 2nd pregnancy was an early miscarriage). I have been avoiding caffeine entirely.  Also, I never exercised with my prior 3 girls, and I am trying to be a bit more energetic than a sloth this time. Of course these changes probably had nothing to do with SIDS, but I am determined to do things differently, in many ways.

Next week I have my first appointment on the 3rd, and will have an ultrasound to check for a heartbeat.  Praying that all is well with baby bean.

We have broken the news to many people, even though it’s early. I suppose that I am just horrible at keeping secrets, and if something untoward were to happen, I want to have support from friends and family.  We haven’t told the girls yet though, which brings me to my next story:

Today I called and spoke to mom on the phone.  She told me that yesterday, A came up to her and told her that she wanted to have a little baby brother.  My mom, surprised, asked A where this came from.  A replied that this was just something she was wishing.  Mom then asked her what would she think if her baby brother was a little squirt? A replied to mom that she already deals with a little squirt in her sister K, so what is one more?

After 3 girls, it seems unlikely that we will have a boy, but they say the odds are 50/50 right? We just have flipped the girl coin 3 times.  Not that it matters to me what the gender is.  I just want it to be healthy.  No genetic defects, no SIDS.  Part of me wonders though, how amazing it would be if A actually was sensing the truth, a premonition if you will.  After talking to another SIDS mom friend online, she mentioned to me that of her 3 babies she has had since her loss, the ones who were the opposite gender to her child who died were the “easiest” to parent, and that when she finally had another son, it brought back emotions that she had buried, and that it has been emotionally much harder for her this time.  I wonder if this would be the case with me.  That a son might be a bit easier because of the complete difference to Anneliese.  I’m not sure. Either way, it will be hard.

Another part of me thinks of the SIDS “statistics” though that boys are more likely to die.  However we didn’t fit any of the “stats” last time.  Obviously Anneliese was a girl, white, not exposed to smoke, etc, etc.  Statistics seem worthless with SIDS as far as I can tell. There is no rhyme or reason to SIDS.

I just want this to be a forever baby.

Praying for this to be the case.

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I can’t believe I am actually writing this.  After so long.  After losing Anneliese to SIDS, battling cancer, and then trying to conceive.. I’m pregnant! It is so early.  The type of early that makes you squint at the test and wonder if you are really seeing a line, or making it up.  I wasn’t even late for my period yet, and my past history has never given me a positive result before a missed period. I have always tended to waste tests when it’s too early.. so when I took a test last night I really didn’t expect to see a line.  But it was there. I still can’t believe it really!

Knowing that I conceived during the month of October, Anneliese’s angel month, makes me feel that this is a sign from above.  That she sent us this baby, whoever she (or he, unlikely as that is) might be.  That everything will be alright.  Of course, I know that nothing is a given.  I have had a miscarriage before, and then SIDS.  I pray that this baby is healthy.  That my family will find a way to manage working full time again with pregnancy and then later a newborn.  If I start to wonder about what we will do, how we will get through the first year.. it will consume me.  I have to give my worries to God.  Worrying won’t change anything anyways.

So tonight I start the first of many injections to prevent blood clots.  Although I detest the sting of the needle, I know that there is a rainbow waiting at the end.  Or I pray that there will be.

Please take care of my rainbow, Jesus.

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