Character of the Hero

Some time ago I was listening to a radio broadcast and the speaker was talking about trials in our Christian walk.  She called out this quote from Abigail Adams (mom) to John Quincy Adams.  It was in a letter she had written encouraging him to go on a trip overseas with his father – a trip that he apparently wasn’t thrilled to go on.  She told him this…

These are times in which a Genious would wish to live. It is not in the still calm of life, or the repose of a pacific station, that great characters are formed. Would Cicero have shone so distinguished an orater, if he had not been roused, kindled and enflamed by the Tyranny of Catiline, Millo, Verres and Mark Anthony. The habits of a vigorous mind are formed in contending with difficulties. All history will convince you of this, and that wisdom and penetration are the fruits of experience, not the lessons of retirement and leisure. Great necessities call out great virtues. When a mind is raised, and animated by scenes that engage the heart, then those qualities which would otherways lay dormant, wake into life, and form the character of the hero and the Statesman.

Abigail Adams to John Quincy Adams, 19 January 1780
Adams Family Corresondence, 3:268

Though few of us would choose life’s most difficult heart aches, the truth remains that these are, unfortunately, the things that most develop our character and call out in us a strength that we never imagined possible. Truthefully, they not only shape who we are, but bring up in us characteristics that would otherwise never be able to grow and develop without such heart ache. I’m not saying I like it nor approve of it, but it is what it is…and apparently that’s the way it’s supposed to be.

Romans 5:3-5 (NIV)

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

So, what does this have to do with infertility and faith?

The very last thing you will hear me say is “Stop wallowing and learn to rejoice!  At least this will teach you some wonderful life lessons and cause you to grow in your spiritual walk.”  I know the Bible says it and I’m not saying it’s wrong.  I’m just saying that sometimes the call to rejoice can drive a person crazy.  I was broken, shattered beyond recognition, and a very wise friend of mine once said “you can’t fix an emotional issue with an intellectual answer.”  Infertility is an extremely emotional issue.  I could not will myself to rejoice.  I didn’t even want to will myself to rejoice.  I was so afraid of missing my refining process by glossing over (ignoring, burying, hiding) my true raw feelings that I forced myself to continue to feel them rather than picking myself up and saying “I’m going to trust God that He’s doing great things in me.”  It was NOT forever that I felt this way, but it was close to a full year before healing began to occur in my life.

So why am I sharing this whole thing anyway then?

I guess I’m sharing it because I’ve seen the truth in it…I’m far enough out of my valley that I CAN say it.  One day hope WILL be restored.  The parts of your personality that you feel may be lost forever (those happy-go-lucky, crazy fun, constantly laughing and joyous parts) will return.  Yes, this trial will change you.  You will never be the same again…but as with any refining process, if you let it, it will only be the unhealthy parts of you that will disappear forever and they will be replaced with things so much better than you could have imagined.  Abigail Adams was absolutely right that it is life’s difficulties that awake in us deeper wisdom, virtue, and (dare I say) heroic faith.

 

And last, for the truly cynical (don’t worry, I’m on your team – that was me) –  next time someone tells you to rejoice in your trial, find out where they are coming from.  It’s pretty easy to determine the plastic people from the ones made of thicker stuff.  If they have a genuine deep faith that really gets under your skin because you just can’t muster up that kind of joy, chances are they have already gone through their valley…let them tell you about it.  You might be surprised.

 

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Unexpected Tears

For some time I’ve been wanting to share with you a letter that I had written to the coordinator of the one and only (in)fertility conference we have attended.  To set the stage for you, this was written in October 2009 after a very spiritually difficult year.  By spiritually difficult I mean that my only conversations with God were “I’m still mad and not talking to you.”  Yes, I mean that literally. 

In case you don’t read all the way through it, I just wanted to say how vitally important I now believe conferences like this are for those struggling with infertility.  We struggled for years on our own…maybe the occasional venting session with a fellow infertile, but could just kick ourselves for not attending something like this sooner.  No matter how far you have to travel, find a conference (or support group) and GO – make it happen.

Oh, and one last thing before the letter – if it sounds familiar to anyone (albeit unlikely), yes, an edited version of this was published in the Stepping Stones newsletter some time ago.  And, yes, as I re-read this, I did make some minor changes, but nothing major.

(name omitted),

I wanted to share with you a story about some events that transpired after my husband and I left the conference yesterday.

Somewhere in the many books that I have read, I remember the author saying that we must pay attention to ‘unexpected tears’ because it is in those particular tears that you’ll find the heart of the matter.  So, on our way home we were talking about things we shared in our groups as well as what we thought about various aspects of the day. As we were sharing with each other, we compared the things that affected us deeply, or in my case, caused those unexpected tears.  It was really surprising because my husband was affected by the video that was shared about parents who, through various methods, had children – he struggled watching the people who were able to finally become parents. He said he wondered why you showed a video of people enjoying the one thing that everyone in that room desperately wanted and couldn’t have.  His struggle is in the fact that he wants to be a dad and it’s just not happening right now.  On the other hand, my hurt is centered around the fact that I feel betrayed by God for not giving us the blessings that He has given so many others.  While it may not seem like a big difference to some, it is a pretty big difference to me. I cry every time I hear someone talk about God’s plan, purpose or will…even his goodness.  To me it is so much more than just not having children, it’s the fact that I feel God is purposefully withholding from me my heart’s desire…or even that He purposefully took away my heart’s desire (like a cruel joke) when we miscarried.  That is what has caused me to be so very angry with God.  For example, if He is trying to teach me patience – just say ‘no’ or ‘wait’ rather than tricking me by allowing me to get pregnant with a child He had no intention of growing.  That’s just cruel.  Because of my faith I understand that our infertility isn’t God’s fault, but rather a results of living in a fallen world.  However, by faith I also understand that God can do miracles and that He is effectively choosing to withhold that miracle from someone (me) who has faithfully followed Him her entire life.  I just don’t understand how or why He would do that when he has full almighty power to do anything He wants.  Why NOT intervene on my behalf?

Later that night, I wanted to look up the Psalm you read.  I couldn’t find my ‘good’ Bible, so I picked up one of the many others we have lying around.  I read the Psalm and thought it was interesting and applicable – a little feather to put in my cap.  Then as I can only describe as a Holy Spirit prompting, I searched again for my own Bible.  I found it, wiped off the dust, and turned to Psalm 77.  I read the first verses and kept reading because I was surprised to see that I had some notes a little later in the chapter.  I always loved to write in my Bible and this particular Bible had very wide margins – perfect for note taking, although I haven’t done much of that in the last few years.  Well, sometime between 5 and 10 years ago I had written the following in the left margin around verses 11-15:

When God seems so far away, I must remember all the great things He has done and get into His word.  Actively decide to change my habits because God didn’t move – I did.  This is, along with a lot of prayer and trusting, the way to return to God.

On the right hand margin I continued with the following,

Review evidence of God’s lovingkindness.  Our faith is nourished by developing a strong sense of God’s acting in the past so that we begin to count on Him to act consistently with His character in the future – again and again and again.

I cannot describe to you the emotions that I felt as I sobbed and realized how quickly I could lose site of the loving God that I had known my entire life.  God has been nothing but generous and kind to me my entire life – given me far beyond what I can imagine or deserve, and yet how quickly that is forgotten the first time He has really told me “no” or “wait” (we’re not sure yet).  How could I so quickly dismiss the loving character of God when He has given me so much evidence to the contrary?  I still don’t know what He has in store for us, but I can tell you that something changed inside of me yesterday.  My God, the God who created the universe loves me.  I may not understand what He’s doing right now, but I know I can rely on His character and how He has treated me my entire life, to now know that He does have a plan – and that plan is to prosper us and give us hope for the future.  Of course that also prompted me to turn to Jeremiah 29:11 where I found the following note:

 We need to:

1. Trust God to do what is best for us

2. Look for ways to honor God in our present situation

3. Remember God will not abandon us

4. Watch for God’s plan for us

So, I just wanted to share all that with you.  Sorry if it’s long, I just thought it might bring a smile to your face as you realize that while we had a very small group yesterday – lives were changed as a result of your ministry.

Thank you,

Annie Karel

p.s. After spending some personal time with God yesterday, I asked Him what we are supposed to do now.  The only response I could even vaguely hear was to pray for direction with my husband.  So, when my husband came to bed I very frankly told him that God wanted him to pray with me.  He laughed and then realized I was really very serious.  So, he prayed and we still don’t have answers, but at least we’re praying about it together.

 
Psalm 77 (NIV)

I cried out to God for help;
    I cried out to God to hear me.
When I was in distress, I sought the Lord;
    at night I stretched out untiring hands,
    and I would not be comforted.

I remembered you, God, and I groaned;
    I meditated, and my spirit grew faint.[b]
You kept my eyes from closing;
    I was too troubled to speak.
I thought about the former days,
    the years of long ago;
I remembered my songs in the night.
    My heart meditated and my spirit asked:

“Will the Lord reject forever?
    Will he never show his favor again?
Has his unfailing love vanished forever?
    Has his promise failed for all time?
Has God forgotten to be merciful?
    Has he in anger withheld his compassion?”

10 Then I thought, “To this I will appeal:
    the years when the Most High stretched out his right hand.
11 I will remember the deeds of the Lord;
    yes, I will remember your miracles of long ago.
12 I will consider all your works
    and meditate on all your mighty deeds.”

13 Your ways, God, are holy.
    What god is as great as our God?
14 You are the God who performs miracles;
    you display your power among the peoples.
15 With your mighty arm you redeemed your people,
    the descendants of Jacob and Joseph.

16 The waters saw you, God,
    the waters saw you and writhed;
    the very depths were convulsed.
17 The clouds poured down water,
    the heavens resounded with thunder;
    your arrows flashed back and forth.
18 Your thunder was heard in the whirlwind,
    your lightning lit up the world;
    the earth trembled and quaked.
19 Your path led through the sea,
    your way through the mighty waters,
    though your footprints were not seen.

20 You led your people like a flock
    by the hand of Moses and Aaron.

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What Hurts, What Helps

Last week a friend of mine posted a list of things to say and not say to someone who is grieving after the loss of their child.  It is so thorough and well written that I wanted to share:

What You Should and Shouldn’t Say to Someone Who Has Lost a Baby (via Naturally Knocked Up)

From someone who ‘dealt with’ her miscarriage with a lot of anger, I can personally attest to the fact that very little of what people say actually helped, but there were things people did that I really appreciated: the sympathy cards, the flowers I found on my desk the day I returned to work, the beautiful necklace that my sister in law sent me that had our baby’s due date birthstone.  As a rule of thumb, I discovered that things said to make me feel better were more often interpreted as minimizing (ignoring) my grief whereas things done to recognize our baby and the grief that accompanied our loss were greatly appreciated.

In addition to her list, I was surprised how angry it made me when I would hear people say that “I lost my baby”. I laid into my mother once (sorry, mom!) because she had referred to me as having lost my baby. I was so mad because I did not LOSE my baby, my baby was TAKEN from me (I told you I had a lot of anger). I know this is a commonly used phrase that is meant to be descriptive of an event, not a cause for said event. Still, it cut deeply. It made me feel like I had done something wrong. How could I LOSE my baby? Let’s try placing blame on someone who had control over the ‘location’ of my baby…and thus my downhill spiral (just to specify, I do not mean the phrase caused the spiral, I’m referring to where my mind was at that time in order to illuminate the cause of my downhill spiral).

I also want to emphasize one of the things this list that truly did help long-term. During the deepest part of my valley, not only did I no longer have any words to say to God, I was convinced He wasn’t listening to me anyway.  Even on my way up, my first ‘prayers’ were “I’m still mad and not talking to you.” While this doesn’t seem like much, I was just glad the communication lines were open again. It was during this time that I coveted the prayers of friends and family. Even though I didn’t have any words for God (and figured he wasn’t listening to me anyway), I knew I was still being lifted up before Him.

And last, I cannot leave this post without adding a section for husbands. Yes, we know husbands are grieving, too. Yes, we want them to talk with us and share their feelings. Yes, we want to know that we are not alone in our grief – our husband has endured infertility just as long as we have, they have suffered miscarriage at the same time, they are the closest thing we have to someone who really understands our path and how it affects our grieving process. That said, we know that husbands grieve differently and they are desperate to ‘fix’ the problem.  So, how can they accomplish this without minimizing our grief as we mentioned previously?

Here are some things I think husbands can do to help:

Allow me to cry – even if you don’t cry with me, please just hold me when I do. Don’t say anything, don’t try to change the subject or make me laugh…at least not at first.

Drag my sorry butt out of bed – when we came home from our ultrasound appointment after learning that our precious baby no longer had a heartbeat, I went straight to my bed and wept…uncontrollably. I have no idea what my husband was doing during this time – probably calling our parents (another gesture that I needed). He finally came into our bedroom and said we needed to go sit outside. I refused – my world had stopped along with my baby’s heartbeat. He literally dragged me out of bed, down the stairs, and to the porch outside where he had some chairs set up. He did NOT demand for me to stop grieving, but rather snapped me out of a moment of absolute agony. I needed that at that time.

Don’t rush me through my grief – I remember telling my husband that I knew I could choose at any time to be done with my pity party / temper tantrum. He smiled and said “great, choose that right now.” To his dismay, I said no – I needed to go through this or I was afraid I would come out on the other side not ever having fully learned what I needed to learn. I didn’t want to skip over or ignore my grief only to find years later that I still had unresolved issues. I needed him to give me permission and time to go through this, and he did – out loud. He told me that no matter how long it took, he was with me. He audibly told me that he would always be with me no matter how hard I fell, no matter how long it took to recover.

Pray with me – my husband was the only person I actually wanted to pray with me and not just secretly/silently pray for me. As I have already said, I had no words for God and I felt like He didn’t listen to me anyway. I am so thankful for a Godly husband who would let me ‘tag along’ with his prayers. I have always known that as long as I stay close to my husband, who I knew was close to God, that no matter how far I got felt from God, I was never out of His reach.

Keep asking me if I want to pray as part of our prayers together, but don’t push me – my husband and I have made a habit of praying together before bed. If you are not in this habit, get in the habit. Yes, it’s uncomfortable if you’re not used to it…it’s even more uncomfortable when each spouse doesn’t have an independent prayer life outside of praying together. In my case, however, not having an independent prayer life did not mean that at some point I didn’t want to return to that sweet relationship with God that I once enjoyed. Keep encouraging me to get there, but if I say ‘no’ then leave it alone…or wait and return to it later. It’s ok in a day or so to ask if I want to talk about my feelings regarding prayer. It is not ok to ask me 3 times in a row if I’m sure I don’t want to pray out loud with you instead of just listening to you pray.

Play interference for me – know that from here on out that you will be getting the mail and promptly throwing away anything baby related prior to it entering the house.  Please make those hard phone calls that I cannot bring myself to endure. Feel free to let appropriate people know how I’m doing so they stop asking me and I can stop repeating myself.

Tell people if I need something that I won’t ask for – a few days after I had the D&C, my husband had to leave for a retreat with church. That night I woke up when the physical pain of the miscarriage hit me like it never had before. I was bleeding, the cramps were unbearable, and I was all alone. In tears I called my poor husband who was hours away and had no way of getting back. He was completely helpless and I was beside myself. I hadn’t wanted him to come back, I just didn’t want to be alone, so I called him. He then called my parents (40 minutes away) and asked them to come up and be with me. I NEVER would have asked them to do this, especially at 3 am. I really needed them, though, and they came bearing food (I was starving and there was no food in the house) and vicodin.

Related – if I’m not getting out, ask my friends to invite me to do things. They may need prompting because they don’t know what is appropriate, but I really need this sense of normalcy.

Related – if someone tells you that they’d love to meet/talk/counsel with me about our loss, please do everything you can to encourage me to go and make that happen. I need it, but won’t pursue it without prompting.

Look for signs of things that have caused me to remember our loss – squeeze my hand after you hear someone say something hurtful and see me choking back tears (although preferably out of view of said person), look me in the eyes on difficult days and tell me that you remember our loss too, cast a loving glance my way whenever something reminds you of our loss because chances are I was reminded as well. Always notice if I’m holding/carrying/wearing a keepsake related to our loss (eg my necklace). Even if all you say is “I miss him/her, too”, it helps to know you notice because it’s not coincidence that I have it close to me at that time.

Recognize when something is really important to me – Mother’s Day, the worst day ever for infertiles and those who have suffered the loss of a child (born or unborn on earth). The morning of the first Mother’s Day after our loss had been particularly rough for me as we got ready for church. I didn’t want to get up, I didn’t want to get ready, I was dragging my feet and they felt like they weighed 1000 pounds. We were running late when we finally got in the car. We got about 5 minutes from our house when I gasped…I had forgotten my necklace (the one I mentioned that came from my sister in law that had our baby’s due date birthstone). I knew we couldn’t turn around and fought the tears. How had I forgotten something so important? When I explained my unexpected discovery to my husband he asked if I wanted to turn around. I said no, knowing it would just make us more late…but of course I then started to cry. This was all he needed to know how much I needed him to turn around so I could have my necklace, the only representation I had of my only child.

Please watch my other blog (www.prayingformiracles.wordpress.com) regarding a post in the next day or so about a husband’s leadership.

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Valleys and Mountains

Confession, I’m a sucker for online forums.  Periodically in my life I have found myself completely hooked on one or another.  When I got pregnant for the first time (as in the very first time), I immediately signed up on the What to Expect When You’re Expecting site.  I was so excited to sign up for all the baby samples through the website and then follow other mommies on the forum who were due at the same time.  Little did I know what a heart breaking decision this would end up being in a few short months.  When we lost our baby, no matter how hard I tried, I could not stop the e-mail status updates nor the samples from flooding my mailbox (I may have possibly signed up on a few other sites, too).  Even a few months before our child would have turned one, I received a magazine filled with first birthday party ideas.  I hated getting the mail.

By the time we got pregnant in 2009, I had experienced years of infertility and two miscarriages.  When it came to connecting with mommies due at the same time as me, I just didn’t fit.  As they complained about morning sickness, I was begging God for signs of life.  As they lamented about slacking husbands/fiancés/boyfriends, I was thanking God for the faithfulness of my husband through my deepest valley.  I simply could not relate to these ladies.  Where I fit was with all the ladies on the Fertility or the Grief and Loss board…these were the ladies with kindred spirits.  They were shocked, broken, and scared to death if they ever did get a positive pregnancy test.  My husband would get so frustrated as I laid in bed at night reading their stories and crying.  He always wondered why I put myself through such agony.  I honestly couldn’t explain it…it was how I felt, too.  In spite of our pregnancy, I was stuck.

As time passed and healing continued, I felt less and less attached to the Fertility and Grief and Loss boards.  By the time I got pregnant the next time (this time), I was to the point where I no longer felt included anywhere.  I would read my due date forum and still couldn’t relate to these care-free ladies.  I would read the Fertility or Grief and Loss forum, but with one living child and another on the way I no longer felt included there, either.  Even though I had experienced great trial and loss, I felt almost graduated from that stage in my life.  This is probably a feeling that prompted the “Your Story Is Important” post on my blog.

Furthermore, I’ve been doing a lot of thinking about where I’ve been and where I am right now.  There was a time in my life that reading certain content in my new blog (Praying for Miracles) would have absolutely infuriated me.  After all, it was not that long ago that I had written “If You Want Me To”, wondering if I would ever react well to someone trusting God.  Then I read “History Becomes Training” or “Color – Before Our Fetal Echo” and realize that the coveted first reaction to my current crisis has actually been one of trust.  If I didn’t know any better, I would say that my current posts were either written by a different person or that the ‘new me’ was a completely fraud. 

Part of this animosity toward those who find it so ‘easy’ to trust God came from sheer brokenness over our losses and part of this came from frustration that, in spite of my Christian upbringing, I had no capacity to handle my crisis with faith and dignity.  I was definitely not one of those faithful and trusting women.  In my period of brokenness and anger, I did not even have a desire or intention of becoming one of those women.  Those women hurt me more than they helped me because rather than trying to understand where I was coming from, they only pointed out how far I had fallen.  They belittled my grief with feel-good phrases that I was sure didn’t help anyone in their moment of sorrow.  In my logic, I would try to understand that these women were not doing this intentionally, that they actually had life experiences that had brought them grief as well.  I tried to understand that they’ve been through their own valleys and are speaking from the truths that they’ve learned after reaching the other side.  Still, my heart was in pieces and no amount of logic helped to put it back together.  I became convinced that no amount of helping from the ‘other side of the valley’ would actually bring someone in the valley closer to reaching the end.  Perhaps I still feel that way and perhaps that is why I feel so out of place all the time.  To this I have no answer.

What I do find interesting, though, is a slight realization of a spiritual truth.  If it is true that no amount of ‘outside help’ can reconcile a person’s ability to reach a new destination, the fact that God sent His Son to earth to be the payment for our sins makes that much more sense.  We are a lost and broken people.  This world is full of heartache and pain, it is the ultimate ‘valley’.  No amount of God saying from Heaven “just trust me and I’ll give you eternal life when it’s all over” would actually be of any benefit to those of us in the valley.  Instead, He sent His Son to endure the valley with us and make a way for us to reach Him through no act of valiance on our own.  Interesting.  Could God have made a way for us to reach Him without sending His Son?  I would have to say ‘yes’ considering the time period prior to when He did send His Son.  That road was hard, though – I can’t even imagine still being under Old Testament law.  This is why God found it necessary to send someone into the valley…so that we could actually be helped in reaching the other side.  I believe this applies both to the fact that Jesus, God’s Son, was sent here as well as the help promised from the Holy Spirit after Jesus left this world.  These are not new concepts to me, just a new realization of the necessity.

So where does this leave me and my story, though?  Do I simply resort to keeping to myself since I appear to be further out of the valley than those I wish to help?  Since I’m already further than some, have I lost my ability to encourage?  I hope not.  If nothing else, I hope my story will show someone NOT the reaction they should have, but that there will be a time in their life that their reaction will not always be one of cynicism and anger.  Yes, there are valleys, but there are also mountains.  When you are in the valley it is important to learn from it, embrace it, don’t skip it – please, don’t pretend it doesn’t exist.  At the same time, though, know that it is not unending.  As Dave Ramsey would say “there is light at the end of the tunnel, and it’s not an oncoming train.”  There is hope, there is healing, there still are mountains.

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Praying for Miracles – New Blog

In light of the new direction God is leading us, I’ve decided to split my blog into two.  I will keep this blog for its intended purpose (updates and thoughts on infertility/miscarriange and how it affects our faith), but it will most likely (at least for now) take a back seat to my new blog, which will be for our family updates.

Please visit us at our new blog Praying for Miracles: http://prayingformiracles.wordpress.com/

Feel free to bookmark and freely share our new blog as we appreciate all of the prayers and support during this difficult time.

Thank you so much!

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Diagnosis

There is so much I want to share this evening. On the other hand, I am beyond exhausted and organized thoughts are few and far between right now. So, I will try to land somewhere in between – which will be mainly facts and I’ll leave the ‘color’ for another day.

The Diagnosis:
Alayna is considered to have a Major Congenital Heart Defect. The main issue is a condition titled Transposition of the Great Vessels where her two main arteries are attached to the wrong chambers of the heart (they are transposed). She also has a VSD (hole in her septum – the wall that separates the chambers of the heart).

In a nutshell, the condition means that her blood is not circulating properly. Blood should go into the heart, to the lungs to get oxygen, and then back out to the body. Since her vessels are reversed, the good oxygen rich blood only circulates between her heart and lungs and the bad oxygen poor blood continues to circulate throughout her body.

The VSD in this case is actually good because it allows for some of her blood to mingle as it flows through that hole between chambers. It is not being pumped right, but some natural mixture does occur. There is also a hole at the top of the heart (every baby has this) that helps with this interaction.

Alayna’s heart is also in the wrong position (more midline than left), but that should not affect her treatment. The pediatric cardiologist also wasn’t 100% sure if she had a double outlet. In a regular transposition of the arteries, they two main blood vessels are each attached to a different chamber, just the wrong chambers. A double outlet would mean that they are still transposed, but both attached to the same chamber. Future ECHO tests should clarify which one she has, but again the treatment is the same.

The Good News:
All of Alayna’s major organs (aside from the heart) appear to be perfect. All of her heart ‘pieces’ appear to be present, just not connected properly. The small veins appear to be correct, the valves appear to be correct and not ‘leaky’. The contraction strength of her heart is good. There doesn’t appear to be any immediate risk to her at the moment, only when she is born and the umbilical chord is clamped.

Treatment immediately at birth:
That hole I mentioned at the top of her heart (the one every baby has) typically closes naturally at birth. She will need immediate medication to keep that hole open and possibly a procedure to enlarge that hole. This allows more of a mixture of the oxygen rich and poor blood to mingle in the heart.

It is possible that she can be delivered near home because of the advanced NICU at Spectrum Health (20 minutes from home). She cannot be delivered anywhere other than a hospital with an advanced NICU. She will mostly likely have the ‘blue baby syndrome’ due to her poorly oxygenated blood. We are looking at the situation where she will be immediately stabilized after birth rather than given to mommy.

Treatment her first week:
This condition does require heart surgery within the first few days after she is born. It is not something that will fix itself or something she will grow out of…she will need surgery. In most cases this is a one time surgery to rearrange the arteries. The surgeon would also close the hole in her septum at this time. This surgery would be done in Ann Arbor, about 2.5 hours away from where we live. We would expect her to be there about a month after the surgery.

If possible, she will be delivered and treated at Ann Arbor. The difficulty would be in how quickly labor progresses. Unless we are in Ann Arbor when I go into labor, we’re looking at a 2.5 hour drive. Since she must be born either here or there, nowhere in between, it really depends on my labor.

Next steps:
We will be scheduled for another fetal ECHO down in Ann Arbor sometime in the next month. The doctor referred to this as a ‘second opinion’, but it really is just another check/confirmation of what we already know and to check to see if anything has changed.

An amniocentesis test is strongly recommended (basically required) to check to see if Alayna has any chromosome abnormalities that might further complicate her condition. There are risks involved, but we understand that the surgeons need to be working with complete information as well. We are not sure when we will do this test (the timing was left open to us).

Points of Prayer:
The amnio test – for Alayna’s safety during/after the test and for the results

That the doctors do not discover any other abnormalities in her organs in subsequent ultrasounds (of which I’m told I’ll have plenty).

A premature birth would be disastrous for Alayna. Since her heart is not functioning properly, poorly developed lungs would make a bad situation far worse…almost impossible to survive.

There are far more, but those are the immediate concerns that we have.

Our main take aways:
We are greatly encouraged by the positive outlook that the doctors seem to have at this point. However, we do not want anyone to misunderstand – this is a big deal and everything has to go right for Alayna to have a fighting chance. Without any further complications, her prognosis is really good. It is, however, open heart surgery on a newborn. Any other complications and her chances will drop drastically.

Posted in CHD | 7 Comments

Encouragement From Here and Above

I am coming to realize that perhaps the biggest mistake I made in my infertility/miscarriage journey was not seeking out a support community.  My version of support was reading the Stepping Stones newsletter (an infertility/loss newsletter put out by Bethany Christian Services) and spending a lot of time on the internet (never a good idea).  It wasn’t until my husband and I attended a fertility conference that I had my first breakthrough in healing.  I have often wondered if I would have fallen as deeply as I did had I surrounded myself with a better community of people who had walked that path before and/or were walking it with us.  I am determined not to make that same mistake again. 

Although I was told to stay off google (probably good, but impractical advice at the moment), I decided to try some ‘productive googling’ – not to research all known heart defects and begin my own analysis based on zero information from the doctor, but rather to seek out information simply on what to expect at my fetal ECHO tomorrow…to perhaps connect with someone who has been there before.  In doing so I came across an amazing blog about a family with two toddlers, the second of which is a ‘heart baby’ as I’m learning these precious children are called (http://preciousmason.blogspot.com/).   It was very encouraging to read of the strength and faith of this family through the honest account of their difficult struggle.  I let the mother know of our story and how her blog had encouraged me that day.  The next thing I knew, I experienced the most amazing outpouring of love and support I could have ever imagined.  Comment after comment on my blog from mommies who have walked (are walking) this path.  As I sat on the couch last night, I soaked in their support, read their stories, cried for their losses, and was strengthened by their faith.  To each and every one of these ladies – thank you.  There are no words to describe the peace that you each have given me during an incredibly difficult time.

I was so happy that I was able to fall asleep relatively easily last night (something that has been incredibly difficult for me lately)…but after my daughter woke up crying around 3:30 am, I was finding it difficult to go back to sleep.  I sat and prayed…prayed for a miracle, prayed for continued peace, prayed for the doctor’s wisdom at our appointment today, and I prayed for my husband – who often leaves himself out of our nightly prayers together.  As I exhausted all of the words I could pray, I was overwhelmed with the verse that talks about how God is able to do immeasurably more that we can ask for or imagine.  I grabbed my iPod wishing to read the entire context of the verse.

“For this reason I kneel before the Father, from whom every family in heaven and on earth derives its name. I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.”

Ephesians 3:14-21

There was only one thing I could think of doing at that moment – I went downstairs, copied the passage into Pages (yes, we have a Mac and not a PC), printed it and taped it to my bathroom mirror.  I returned to bed and the part about God being able to do immeasurably more than all we ask or imagine rang over and over in my mind.  I couldn’t think of anything else, I couldn’t contemplate all of the questions I had been thinking of lately, I could not bring myself to think of any other phrase.  I know this passage is meant for me at this time.  I do not know how God will accomplish this (whether it is in an obvious miracle today or something altogether different and much further in our journey), but I do know that he can and will accomplish great things through our struggle beyond what we can ask for or imagine.  I am holding to that promise as I make it through the long hours until our appointment today (3 pm) and thereafter.

Posted in Community | 4 Comments