Today's ultrasound update

We had our 3rd ultrasound this afternoon... we couldn't see much "new" from the last time, except that her hands are in the signature position for trisomy 18, with overlapping fingers... that wasn't surprising, though...

On the positive side, her heart was beating strong and steady at 150 beats per minute - that was a beautiful sound... and her growth is actually ahead a little - last ultrasound 2 weeks ago, she was measuring exactly on target for dates, literally measuring *to the day* of her gestational age - today we are 13 weeks and 3 days, but she is measuring ahead at 14 weeks for size (4 days isn't a large amount, but given the circumstances, it feels like a small victory) - trisomy babies are usually small for size, but the larger the baby the better their chances are of surviving, so it was encouraging to see her growth ahead of where it was expected to be. :) that isn't expected to last, but it's nice to see her getting a little head start at least.

We couldn't see much more with her heart - it is so small yet, at such a young age - but it is still out of position (the u/s tech said she's never seen it move during pregnancy - I asked) and the same with the abdominal wall defect - and again, she said that in all of her years doing ultrasound, she's seen this several times, but has never seen it heal during pregnancy. Of course, that doesn't mean God cannot heal these things if that's His plan, but medically, they haven't seen it happen before... I'm not getting my hopes up on that front, but resting in the Lord for our little one and her health issues... We should be able to see more clearly as she gets bigger.

We go back in another month for the next ultrasound, when we should be able to see more with her heart and other areas of concern - right now she's still so little that it's difficult to see what needs to be seen.

Thank you for praying for our little one. We appreciate your prayers so much!!

Jeremiah



Jeremiah 29:11-12

 ^11 "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. ¹² Then you will call on me and come and pray to me, and I will listen to you."

 

Tomorrow afternoon is our next ultrasound.  I can't help but be a little nervous, knowing what we do - and yet I am prayerful and hopeful that we can listen to Faith's heart beating steadily away.

 

We went to town yesterday, and as I was in need of purchasing some larger pj's for Ben who is getting so very big, we went in to my favorite second hand children's clothing store Once Upon a Child.  They didn't have what I went in for, but I couldn't resist looking at the baby girl things...  the preemie sizes, knowing that Trisomy 18 babies tend to be very, very small at birth...  I found two adorable little baby gowns that have the front openings for easy access, and since they were only a few dollars each, I bought them - partly as an act of faith, and partly because I just really wanted to buy her something.  An act of showing God (not that He doesn't already know my heart, because I know that He does) that I trust Him and I believe that if it is His will, He can heal Faith...  and even if He does not heal her on this earth, that perhaps He might allow us to hold her and know her in this life before it is her time to go and live with Him.  Either way, she will need something to wear.

 

If you've seen the movie "Facing the Giants", you'll understand the context of the saying "preparing the ground for rain" - and that is what I am doing.  I trust that God will bring the rain, but rather than sitting there and watching for it to come, I'm preparing the fields for it, figuratively speaking.  Putting forth an act of faith that shows that I know He can and that HE WILL - in His good time.  We don't know what His timing is or will be, only He knows that.

 

Growing up, my Meema used to say that we could claim God's promises in prayer, and as she would pray (she was very much a Pentecostal - I am not, but I appreciate her deep faith and her amazing love for the Lord) she would "claim" things in prayer.  I'm not so sure I agree with that concept.  I know that God has given us promises, and I know that He always does what He says He will do...  but I think that sometimes in our human minds, we get an idea set of how that should look...  and what we envision isn't always what He meant.  I know that He will heal the sick and the wounded.  He says that He will, and I know that is true - but He doesn't say that He will heal them all in this life and on this earth...  some healing only comes in Heaven.  Since we cannot know when or where Faith's healing will come, we can only trust that He has a plan...  He has a plan for her, and He has a plan for us. 

 

His plan is for our good - though sometimes His plans for our good mean hurt in the process...  growth isn't pain free.  When a small child gets a new tooth growing in, it is a good thing - but it is uncomfortable for them, sometimes it is downright painful.  When God prunes our branches, so to speak, it is a painful process, but it is for our good.  The end result is something refined and more beautiful than we could ever hope to achieve without  Him - the end result is a more fruitful life.

 

So today my scripture promise, my prayer of thanksgiving comes from Jeremiah 29.  I know that He has a plan for our sweet unborn daughter, as He does for all of us.  And I know without a shadow of doubt that He hears our prayers, He listens to us when we talk to Him.  It is also my prayer that I listen when He is talking to me, and that I would hear in my heart, in my spirit, and in my mind, what He is saying.  Through the tears, through the hurt, through the joys...

TJ's surgery update

Well, TJ's surgery was Wednesday morning, and it went well.  He was back there in the OR for about 5 hours, then in the post-op recovery room for almost another hour before we got to see him - because of the scary reaction he had last time, the doc decided to keep him in the hospital overnight (23 hour stay) as a safety precaution.  He (the doc) thinks that TJ developed blood clots in his liver, which is most likely why he gave us such a scare before - as a preventative, just after surgery and after the tourniquette was taken off, they started him on an anticoagulant medication to help prevent any clots from forming where they should not.

One thing for continued prayer is that during the surgery, the doc did find an area on TJ's foot that had dead bone tissue.  It isn't in an area where he's even had surgery, and to the best of both of our recollections, he's never had an injury there... it wasn't there with his last surgery in February, and it's got the doc baffled.  He removed all the dead tissue and sent it to pathology for testing (though he did assure me that he's pretty sure it isn't anything scary - it's more of a precautionary measure, which I appreciate!)  We should get the pathology findings next week at TJ's post-op appointment when he gets his soft cast off and his first hard cast (for this time around) on.

He was released yesterday early afternoon and we brought him home and settled him in for some rest.

His pain is managed with a prescription, but he's really doing surprisingly well with it (considering his experience last time around as a comparison) -

We are so thankful for the prayers of so many friends and family who have been with us through everything we're dealing with at present - thank you for your prayers specifically for TJ and his surgery! 

Book recommendation

I have a book recommendation if you or someone you know is struggling through (during or after the fact) miscarriage, stillbirth, infant loss, etc - or the grief of hearing your unborn child is "incompatible" with life and has a short life expetancy... 

It's very well written, but because of needing to put it down and just cry sometimes, it's not an easy read. Especially when struggling with grief and the uncertainty our baby's life holds (will she live? will we meet her while she's still alive? will we be blessed to need to learn a special routine to juggle her many health care needs if she lives?)

It's called "I Will Carry You: THe Sacred Dance of Grief and Joy" by Angie SMith (wife to Todd Smith, singer for Selah)

Last night I read the chapter on the birth (and death) of their little daughter Audra. Such a beautiful story, heartwrenching to read, but also healing in some ways...

Anyway, if you know someone who is struggling with this kind of grief, I highly recommend it. It is interlaced with praise to our Creator, scripture (kept in context, which I think is especially important), prayer, and showing God's presence even in times of great pain.

Thoughts and ramblings



"For you created my inmost being;

    you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

    your works are wonderful,

    I know that full well."  Psalm 139: 13-14

This last week has been hard.  So much information to take in.  The heartache of hearing how short our sweet baby’s life is expected to be is almost crippling.  Some moments I feel like I am suffocating, others I feel like we’ll be ok, we can get through this with the Lord’s help…

A friend called yesterday and during the course of our conversation she asked me if I was angry about Faith’s diagnosis.  My only thoughts were: How would I possibly be angry?  How could I be angry with the God who has given us the gift of her life?  How can I be angry with the God who carries us through when the pain is simply too much to carry on our own?  No, I am not angry.  I feel shaken, sometimes maybe even broken, but never angry.  The dreams we hold for each of our children never includes profound handicaps – but if the Lord sees fit to gift us with Faith’s life outside of the womb, we will embrace every aspect of the life He gives us with her.

I embrace my growing belly, and passionately love this fragile, tiny life growing within me.  I embrace each and every day that she is with us.

My God is a God of miracles, and I KNOW that *if it is His will*, He can heal her.  Totally.  Completely.  At the same time, I have to acknowledge that His plan for her may not include healing in this life.  It may not come until she is in His arms, in His presence.  I have to accept and embrace that as well.

Trisomy 18 has staggering implications.  The medical outlook is very negative. Even more sadly to me is that it is estimated that 86% of babies diagnosed with this are aborted shortly after diagnosis.  All of those lives cut short…  It is unfathomable to me.  And yet, before hearing this hard news about our sweet baby, it was also unfathomable to think of being faced with the reality of carrying a life that has so little chance, statistically speaking, of making it to a live birth.

I am shaken, but not broken.  We still praise the Lord for her life, in whatever form He sees fit to give it.  We thank Him for the strength to walk this road, because we are not strong.  We do not have the strength to walk it ourselves.  I feel so very weak.  At times I feel helpless.  There have been moments where I feel the enemy “whispering” that I should stop the twice daily shots that counteract my bleeding disorder, which help prevent my blood from clotting and suffocating our baby.  To stop the progesterone cream that ensures my body has the necessary hormones to successfully carry our baby.  I am old for a pregnant mom, at 41.  But always, ALWAYS, I am reminded that I need to fight for this baby as I would any other.  Her life is no less precious, no less special, with her condition(s).  I choose to fight for her life, I choose to embrace this difficult journey.  I choose life.

There are those who argue that a life like hers is not worth preserving.  I’ve read medical reports and opinion papers published in the APA (American Pediatrics Assoc) online that argue that it isn’t right to prolong a life that is considered to be incompatible with life.  My thought is, if my child is so “incompatible”, then why is she alive now?  God knows far better than any of us could even begin to fathom.  He has a plan.  Quality of life is measured in so many different ways, depending on one’s perspective.  If our child has very little chance of being “normal”, does that mean her life is less valid?  No, it doesn’t.  Not by a long shot.

The words of Job come back to me, as they have time and again when we have been faced with so many miscarriages over the years.  “The Lord gives, and the Lord takes away.  Blessed be the name of the Lord.”  Yes, indeed.  Blessed IS the name of the Lord, and we thank Him for being in control, for holding Faith’s fragile life in His great hands.

This morning, the children’s Sunday school song keeps running through my head – My God is so big, my God is so mighty, there’s nothing that He cannot do.

 This is so true.

My God *is* so big, and He is SO mighty.  He is the God of miracles, and her life in and of itself is a miracle.

I don’t know why we have been chosen by the Lord to walk this road.  I don’t know what His purpose is in allowing such things to happen to our children.  I don’t understand why such suffering must exist in this world.  At the same time, I know that He doesn’t leave us to walk this road alone – and when we can’t see Him, it’s because we have closed our eyes or they are blinded by tears.  When we cannot feel His presence walking with us, it’s because He is carrying us through.  I know that He loves the little children even more than we do, even more than we can ever begin to comprehend.  I know that He has a reason, and though I may never understand in this life what that reason is, we can rest in the knowledge that we don’t have to understand it to rest in it.  To trust.  

This last week has been hard.  So much information to take in.  The heartache of hearing how short our sweet baby's life is expected to be is almost crippling.  Some moments I feel like I am suffocating, others I feel like we'll be ok, we can get through this with the Lord's help...

A friend called yesterday and during the course of our conversation, she asked me if I was angry about Faith's diagnosis.  My only thoughts were: How could I possibly be angry?  How could I be angry with the God who has given us the gift of her life?  How can I be angry with the God who carries us through when the pain is simply too much to carry on our own?  No, I am not angry.  I feel shaken, sometimes maybe even broken, but never angry.  The dreams we hold for each of our children never includes profound handicaps - but if the Lord sees fit to gift us with Faith's life outside of the womb, we will embrace every aspect of the life He gives us with her. 

I embrace my growing belly, and passionately love this fragile, tiny life growing within me.  I am thankful for each and every day that she is with us. 

My God is a God of miracles, and I KNOW that *if it is in His will*, He can heal her.  Totally.  Completely.

At the same time, I have to acknowledge that His plan for her may not include healing in this life. Her healing may not come until she is in His arms, in His presence.  I have to accept and embrace that as well.

Trisomy 18 has staggering implications.  The medical outlook is very negative.  Even more sadly, it is estimated that 86% of babies diagnosed with this are aborted shortly after.  All of those lives, cut short.  It is unfathomable to me.  And yet, before hearing this hard news about our sweet baby, it was also unfathomable to think of being faced with the reality of carrying a life that has so little chance, statistically speaking, of living to a live birth. 

I am shaken, but not broken.  We still praise the Lord for her life, in whatever form He sees fit to give it.  We thank Him for the strength to walk this road, because we are not strong, and we do not have the strength to walk it ourselves.  I feel so very weak, at times I feel helpless.  There have been moments where I feel the enemy whispering (not literally, but figuratively) that I should stop the shots and the progesterone cream.  I have a bleeding disorder that requires me to inject a medical solution into my belly twice a day so that my blood doesn't clot and suffocate our babies when I am pregnant.  I am old (for a pregnant mom) at 41, and progesterone levels are simply not what they once were when I was much younger and first starting our family.  But always, always, I am reminded, I need to fight for this baby as I would any other.  Her life is no less precious, no less special, with her condition(s).  I choose to fight for her life, I choose to embrace this difficult journey.  I choose life.

There are those who argue that a life like hers is not worth preserving.  I've read medical reports and "opinion papers" published in the American Pediatrics Association (online) that argue that it isn't right to prolong a life that is "incompatible" with life.  My only thought is, if my child is so "incompatible", then why is she alive now??  God knows far better than any of us could even begin to fathom.  He has a plan.  Quality of life is measured in so many different ways, depending on one's perspective.  If our child has very little chance of being "normal", does that mean her life is less valid?  No, it doesn't.  Not by a long shot.

The words of Job come back to me, as they have time and again when we have been faced with so many miscarriages over the years - "The Lord gives, and the Lord takes away.  Blessed be the name of the Lord."  Yes, indeed.  Blessed IS the name of the Lord, and we thank Him for being in control, for holding Faith's fragile life in His great hands.

This morning the children's Sunday school song keeps running through my head,

My God is so big,

My God is so mighty

There's nothing that He cannot do

This is so true.

My God *is* so big, and He is SO mighty.  He is the God of miracles, and her life in and of itself is a miracle. 

I don't know why we have been chosen by the Lord to walk this road.  I don't know what His purpose is in allowing such things to happen to our children.  I don't understand why such suffering must exist in this world.  At the same time, I know that He doesn't leave us to walk this road alone - and when we can't see Him, it's because we have closed our eyes...  when we can't feel His presence walking with us, it's because He is carrying us through... I know that He loves the little children even more than we do - even more than we can begin to comprehend.  I know that He has a reason, and though I may never understand in this life what that reason is, we can rest in the knowledge that we don't have to understand it to rest in it.  To trust.

Each day, as the morning sickness rolls through and I try to not get sick, and even when I find myself leaning over the sink, the contents of my stomach no longer where they were, I am thankful.  Each time that is a reminder that her life is still growing within me.  Each day that there are not the tell tale signs of impending miscarriage, I thank Him that she is still with us.  It is day by day.  It is hard, not knowing if she will survive to birth, if she will survive to the next trimester...  if she will survive her first birthday, her first Christmas...  how much time will we be allowed?  We cannot know - only the Lord knows.  All we can do is thank Him for each day that we do have, and embrace her life as it is right now.

I pray for a miracle for her life, but only if it is within God's will.  How awesome would it be if He saw fit to heal her broken body?  To heal her heart, to heal her abdominal issues, to put those organs back inside of her body and close that membrane sack that holds her insides on the outside of her tiny body...  to heal any other health issues she may have that we don't know about yet?  He can do it, but we don't know if He will.  That may or may not be His plan.  Because we can not know, we have to simply trust.

God is good.  All of the time.  He is gracious and loving.  He is our Abba Father.  He has a plan and a reason, and I am so thankful for that knowledge, even if it is so great that I can't quite comprehend it all.

Thank you, Lord, for our baby Faith.  Thank you for her life, in whatever form You see fit to give it. Help us to walk this road, Lord, because we cannot walk it without You.  Give us the strength and courage, the wisdom and discretion in making the choices You would have us make for her.

Thank you for those who are partnering with us in prayer on Faith's behalf.  On behalf of our family.  Where two or more are gathered together, You are there.  Thank you for Your presence. 

Ultrasound update

The ultrasound today confirmed everything...  our baby's heart is still beating but is not positioned correctly - and she has a large area outside of her abdomen that is either a hernia or a growth holding internal organs outside of her abdomen where they normally would be - it is suspected to be the latter, but we'll know for sure in a few weeks if we do not miscarry before then.  Her growth looked good - right on for where she should be with our due date, so that small piece was encouraging.

 

Dr said we have about a 50% chance of making it to 20 weeks.  Research shows a 10% chance of making it to birth *if* we make it to 20 weeks.

Our next ultrasound is in 2 weeks, and we may be able to see more then.  We won't have a great view of her full heart and be able to get a good understanding of the severity of her heart condition for close to 10 weeks from now.  It's a short time, but feels like an eternity at this point.

 

TJ and I did decide on the name Faith for her, so we can refer to her by name instead of just "baby".

 

We greatly appreciate the prayer support for Faith, as well as the rest of our family, and our medical team as we walk this hard road.

I Will Carry You...

I first heart this song after our 7th miscarriage - it ministered to my heart in so many ways.  Now, facing a pregnancy with a grim outlook, it again brings comfort (and tears) - I am honored to be the vessel for my child's life - no matter how long or how short her life may be.

Lord, give us the strength to walk this road.  We cannot do it without You.

Baby update...

We are expecting our 10th child.  We just received results today confirming that our baby has Trisomy 18, which is most often fatal for the baby within weeks, sometimes hours of birth, with a very high stillbirth rate. 

We know that God is the maker and giver of life, and that He alone determines the number of days for each and every one of us. 

Please keep us all in your prayers through this - for wisdom in medical decisions, for the Lord's peace to reign.  We absolutely will not consider abortion under any circumstance - our child's life is precious and is a gift from the Lord, and we cherish every day that God sees fit to give us with this baby, just as with our other children.  Please be in prayer for our OB, he is a high risk specialist and knows our family well.  He is an excellent doctor who specializes in neonatal care and high risk pregnancy, and he is a Christian.  He delivered our 2 youngest children, as well as having helped us through our 7th miscarriage almost 2 years ago.

From the beginning, I knew something was different with this pregnancy...  I even told my doctor and nurse that I felt that something wasn't quite right - after learning about a test that is available to "mature" moms, which we had done last week (using my blood, not baby's amniotic fluid), I went home and read up some on the different trisomy disorders the test covers.  That night I had a dream that we had given birth and held our baby, and the next thing I knew I was writing an obituary for our new baby - I woke up with tears on my face and have wondered since if that was the Lord preparing my heart for news to come, or if it was simply the bad timing of reading something like that before bed with pregnant hormones all over the place.  It seems the Lord was preparing my heart.

We have an ultrasound tomorrow, and our OB plans to monitor us closely throughout this pregnancy.  We do not know if this child will live to be born or not.  We do know that the Lord loves this baby even more than we do, and that He is in control - hard as this is to digest and accept. Your prayers through out the remainder of this pregnancy and for however many days the Lord sees fit to give our newest little one are much appreciated.  Thank you for your love and prayerful support.

Resting in His hands...