Friday, January 31, 2014

Christ's Love Is All I Need

I shared this song a couple of Sundays ago and wanted to share more about it.

Some of you know this, some don't, but on and off over the last couple of years, I (Alan) have spent time working on retuning unknown hymns from old hymnals.  My workflow involves reading through old hymns in print, on Google Books and in Logos.  When I find one that I like, or seems like it might be a good hymn to work on, I paste it into Evernote to work on later.

I haven't really touched the Hymns Project for probably 6 months or so, but for some reason last week, sitting at the piano, I opened up the notebook in Evernote.  This hymn was the first one on my list.  I remember that I liked the verses when I pulled it into Evernote, but the chorus really felt trite.  (see Jodie's post from earlier)

I have never heard of George W Sides, and Steve Green's MIDI Hymnal in Logos was the only hymnal I found the words to this song in.  After I retuned it, I did listen to the MIDI, and it's a hokey (sorry if this hymn is near and dear to anyone...), happy go lucky 6/8 hymn.  The "I know" part seemed to be thrown in there so everyone can work on their octave leaps.

When I read "Though dark and dreary be life's way," I started in minor and worked towards a major chorus.  The "I know" became a reminder to self as I sang.  I had to significantly rewrite the third verse to make it comprehensible.  After a couple hours of work it started to come together.

As the song came together, I began to feel the Lord leading that I should share the song that Sunday morning.  I thought it was a horrible idea, as I doubted that I could make it through the song, but the Lord seemed to keep pushing.  Finally I decided that if there was extra time in the service, I would sing the song, but I knew that we were tight on time, so I was pretty sure that wasn't going to happen.

Our guest preacher only preached for 35 minutes and announcements were brief....




Lyrics:

Verse 1
Though dark and dreary be life’s way
And burdens hard to bear;
There’s One whose love will never fail,
My heart shall ne’er despair.
My hope is staid in Him today
And He will safely lead;
To that sweet home beyond the sea,
Christ’s love is all I need.
Verse 2
Though trials press onev’ry side
And many snares there be;
I look in simple faith to Him,
Who calmed the stormy sea.
He is the Shepherd kind and true,
His sheep He’ll ever feed;
This cheers me on and makes me strong,
Christ’s love is all I need.
Verse 3
And when I see the storms ahead
Across the churning sea
I shall not fear to press ahead,
For at my side is He.
He bore the sting of death for me,
Has met my ev’ry need;
And so I sing the sweet refrain,
Christ’s love is all I need.
Chorus
Christ’s love is all I need each day,
I know, I know,
Christ’s precious love is all I need,
He’ll lead me safely on life’s way,
I know, I know
Christ’s precious, precious love is all I need.
Tuesday, January 28, 2014

Dear Refuge Of My Weary Soul

Last week was a pretty hard week as we anticipated results. For those who got the impression that we were clinging wholeheartedly to the cross last week, Alan was, but I wasn't. I explained to a friend last night how last week really rattled my faith a bit {ok, a lot}, and that ultimately, I found myself still coming nearer to Him, not on my own will, but simply because He loves me THAT much that He wouldn't let me get too far away. A friend shared this with me of their own experience, and it pretty much sums up all of last week (and the last 36 days) better than I can...

"God graciously wouldn’t let me escape the fact that as terrible as everything seemed, there was hope nowhere else. I’d seen God’s faithfulness too many times to be able to logically conclude he’d actually abandoned me. To ultimately doubt his love would’ve made me the epitome of a fool. We were created for dependence. I knew that, but I think I had to fall harder than I ever had –in ways I never had– to learn what it really meant for God to be my only hope. It’s funny how Christian clich├ęs can seem trite until the Teacher of life schools our ignorance to regard them as precious."

We greatly understand that there are many who read this blog that do not know the Lord, and thus some of our posts might feel foreign, not make sense, or otherwise. Please know that the reason we share Jesus on these pages is because He is our only hope. If you do not know the Lord, we pray you would come to know Him through our journey. If we boast of anything on these pages, may it be of the Lord.

Here's the song that I clung to last week when I finally realized all I could do was bring my sorrows to the cross. {Can also be found in the Grace Hymnal Project #195}








Monday, January 27, 2014

Results Update: Next Stop-Children's Mercy


The final results from the amniocentesis came in today, and the results show mosaic trisomy 22.  What this means is that some of the cells in the baby have trisomy 22, and some of the cells are completely normal.  This means that probably the previous FISH were fetal cells, but cells were the normal cells.  Of the 20 cells they were able to culture out, about half of them were trisomy 22. 

Although it is hard to hear that our baby does have trisomy, this is positive news.  If the test had come back that it was complete trisomy 22 for example, then the baby would not likely survive to birth.  Also, if the baby had complete trisomy 22 or trisomy 13 or 18, doctors will not intervene because those conditions are "not compatible with life."  In the case of trisomy 21 (down syndrome), for example, doctors would medically intervene.  In the case of mosaic trisomy 22, the doctors will also intervene if possible as the few cases of mosaic trisomy 22 are born and live.  

This is a very rare condition.  Our doctor told us today that there are only 15 cases in medical literature.  Those cases are all over the place medically with a whole slew of different symptoms and severity.  In other words, until this baby is born, only the Lord knows what symptoms and severity Chloe will have.  

Going forward, we will have an appointment with the pediatric echo-cardiologist at Children's Mercy late this week or early next week.  That doctor will determine whether the heart defect Chloe has is operable.  If so, then we will plan to have the baby in Kansas City, and they will perform heart surgery on her immediately after birth.  Please pray that the heart defect is operable, as this will give her the best chance for life.  

With mosaic trisomy, the chance for miscarriage drops dramatically, and we are looking at a live birth.  This obviously lifts a weight for us. 

Prayer Requests:
-That Chloe's heart defect is operable and God places her (and us) in the hands of great surgeons and grants them wisdom as we gather information on her heart.

-For safety in travel to and from KC, and for healthy sitters for the kids.

-That God would continue to bring healing to Chloe. We believe He has already done so by removing the fluid from her brain and lungs between the first two ultrasounds. Please pray that He would heal her and that she would be strong to get through the surgeries she'll need after she is born.

-Our hearts to know how to love and be there for Isaac and Abi as we spend so much time at appointments.

-For our hearts. Even though this is essentially good news, it's still so overwhelming, especially not knowing the 
extent of her condition until she's born. Pray that we would seek wisdom from the Lord for our daughter through this process. 

-That the Lord would bless us with amazing doctors, both OB/delivery and Chloe's neonatal doctors and nurses, and continue to grant wisdom to our doctor here as well. 

Praise:
-That it isn't complete Trisomy and there is great hope now that she'll be ok after surgery.

-For amazing ways the Lord continues to work in this journey...between the two ultrasounds we've had, there's question about our actual due date and her size. Fortunately, by the Lord's grace, we happened to have an early ultrasound at 8 weeks to check heartbeat before we headed home to Iowa, and put our minds at ease that our baby was ok since I had cramping early on. These type of ultrasounds are considered "fun ultrasounds" meaning we get to see her, but they do not take measurements or anything and the doctors don't even see them-no record is kept. In Chloe's case, our sonotech just happened to measure her crown to rump length (CRL) and even though the doctor's had no record of it, we kept the images, and praise the Lord the size is recorded on it, so that will give our doctor the missing info he needs to better determine her actual dates (we've been given 3 different dates from 3 different doctors based on 3 different ultrasounds-we need peace of mind knowing what week we actually are and how small she really is). Every week counts, so we're thankful for this piece of the puzzle to help better determine what week we are. Thankful He is in all the details. Thankful He went ahead of us and knew we'd need that early ultrasound.

Finally, again, thank you so much to all those praying for us and the many ways you show your support for us. We are blessed. 

Sunday, January 19, 2014

Make No Mistake

Make no mistake-God will, and is, using this. Our prayer is that through this, we continue to have humility before Him, continue to cling to His truth even now, that we would follow in obedience through this trial, that we will walk in faith during this time, that we would focus on the Word, that we would cling to His plan in all of this, that it would bring others to Christ and glory to Himself. 






Speak, O Lord, as we come to You
To receive the food of Your Holy Word.
Take Your truth, plant it deep in us;
Shape and fashion us in Your likeness,
That the light of Christ might be seen today
In our acts of love and our deeds of faith.
Speak, O Lord, and fulfill in us 
All Your purposes for Your glory.

Teach us, Lord, full obedience,
Holy reverence, true humility;
Test our thoughts and our attitudes
In the radiance of Your purity.
Cause our faith to rise; cause our eyes to see
Your majestic love and authority.
Words of pow'r that can never fail-
Let their truth prevail over unbelief.

Speak, O Lord, and renew our minds;
Help us grasp the heights of Your plans for us-
Truths unchanged from the dawn of time
That will echo down through eternity.
And by grace we'll stand on Your promises,
And by faith we'll walk as You walk with us.
Speak, O Lord, till Your church is built
And the earth is filled with Your glory.

Keith & Kristyn Getty




Saturday, January 18, 2014

So Many Thoughts...

Last Wednesday was our ultrasound with perinatologist and geneticist in Topeka. Our minds are still swirling. The geneticist met us first, and asked us to explain what's going on, went over health history of both sides, and questioned the FISH results being normal with the characteristics shown on the ultrasound. She wasn't convinced Trisomy is off the table yet. In fact, at one point at the end, she even asked to clarify that we were indeed continuing on with this pregnancy. YES.

Walked out of that appointment in tears because the word Trisomy came back up our throats. A few other genetic syndromes such as Turner's or Noonan's came up...Alan wasn't convinced of anything just yet and reassured me to wait for the ultrasound before we got too worked up.

Ultrasound was long. Nearly 45 minutes of measurement after measurement. The sonotech was nice, but quiet, though she reassured us it was simply because the doctor likes to give the results. Didn't help. She switched to 3D at one point and we saw her cleft palate. She continued on, measuring the heart, watching the splotches of red and blue circulate through it to determine how it's working, but again, not saying a word.

Finally the perinatologist came in, introduced herself, and asked us to start from the beginning and explain what all has gone on in the last month. Even after repeating our story so many times, I get so overwhelmed I can't even remember half the details. Finally she said that from the images she saw already, that there wasn't a lot of good news. Insert sobs, which is hard when you're on your back trying to have a sono done. She then performed an ultrasound herself so A) she could see firsthand, and B) to explain things to us.

-Praise that there is NO fluid in Chloe's brain. In fact, the doctor questioned if it was really there in the first ultrasound because her brain looks completely normal now.

-Praise that there is NO fluid in or around Chloe's lungs. Again, we praise because this was certainly present on that first ultrasound.

Concerns:
-Fluid on neck is still there, and this is the marker for chromosomal abnormalities, hence why this doctor also brought back up the word Trisomy again. This is where we get concerned and (well, at least I freak out) and worry that the FISH results were not correct. The doctor wasn't sure how nothing cultured out of the amnio sample, and was convinced they must have tested my (maternal) cells by mistake. We'll get back to this in a moment...

-Cleft Palate

-Possible club foot, although later we realized that we each have a relative that was born with club feet. Praying this is its own thing and not related to all the other issues.

-Kidneys looked ok-a bit smaller (or was it larger?) that normal, but she actually said this was the least of her concerns today. She said she could see her stomach as well, which is good because it wasn't seen on the original ultrasound. Seeing it means Chloe is at least able to swallow something, since it's showing up in the stomach.

-She is measuring small, not by dates, but just by...who knows...everything? So techincally, we're back to being at 23 weeks as of tomorrow, but measuring 21.5 weeks (2.5 weeks small).

-Heart defect. This is the huge thing, obviously. Not sure exactly, even after she explained it to us, but Chloe is missing one of the chambers, or it's so tiny it's unseen yet, on the right side of her heart, the side/part that pumps the blood out to the body and lungs for oxygen.

Where we go from here:
We discussed if it is Trisomy still, depending on results from another amnio, and was told if it's Trisomy 13, then the baby could pass on its own still in the 2nd trimester. If it's Trisomy 18, most likely hours after birth it would pass away. If these are the cases, most likely delivery in Manhattan.

If FISH and amnio results come back NEGATIVE for Trisomy (seems they've almost completely taken Downs off the list), then we breathe a HUGE sigh of relief, and focus on her heart. We start seeing a cardiologist over at Children's Mercy in Kansas City, start doing more ultrasounds to watch her heart and really learn how her heart is functioning so they can know what surgery to do, and it'd mean delivery at Children's in KC, with immediate surgery for her, which of course means things like cardiac PICU or NICU (I don't know these terms just yet...), long stay in hospital...bills...new doctors...new OB over there...the list scares me. But trusting Him.

We left discouraged and encouraged, if that makes any sense. In some ways, thankful there's no fluid in brain or on lungs as these were also markers or characteristics of chromosomal syndromes, so we are thankful those are gone and look healthy and normal. However, still discouraged about the fluid on the neck since it's such a huge marker. Alan was so good to keep me focused when my mind was freaking out again about doing another amnio and the possibility of it still being Trisomy.

Our doctor scheduled us asap for another amnio on Thursday. He was amazing and got a clear sample this time. We talked over how the appointments went, and he is encouraging us that he spoke directly with the doctor who cultured and read the original FISH test, and that doctor was convinced he tested the fetal cells and not my cells, which gives us great hope that it's still negative.

Prayer Requests:
-That the FISH results would be in soon and still be NEGATIVE. Please, please pray for this. This would mean we focus on heart and our daughter has a fighting chance for a normal life after heart surgery at birth. That if this is the case, He would begin to work in us to prepare us for all of this...

-That the fluid on her neck would begin to go down to normal (it's 10mm now, should be 5mm).

-That she would start to catch up in size to where she should be.

-Wisdom for Dr. Priddle, and all doctors and nurses helping us through this.

-That God would bring her healing.

Trying to get through one day at a time. Please, until we know the results, help us to focus that it's not Trisomy...not just yet...let us take one thing at a time, one result at a time. Thankful and praising Him that the amnio went well and I am feeling...well, as good as I can right now in light of two amnios in less than a month. Thank you again to all who have helped us, watched the kids, brought meals, sent cards, and so on. We are grateful for each and every one of you.

"Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us."-Ephesians 3:20

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." -Isaiah 41:10

"He gives strength to the weary and increases the power of the weak." -Isaiah 40:29

"When you pass through waters, I will be with you; and when you pass through rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God..." -Isaiah 43:2-3

"In the same way, the Spirit help us in our weakness. We do not know what we ought to pray for, but the Spirit Himself intercedes for us with groans that words cannot express." -Romans 8:26
Tuesday, January 14, 2014

Please Pray for Ultrasound Tomorrow

A few friends have asked our thoughts on tomorrow...

Nervous. Never thought I'd be sitting through a genetic counseling meeting. Although, encouraged that at this point and with the results we got, our doctor reassured us it's protocol for this particular specialist's office.

Excited. To see our little girl wiggling on that screen again.

Scared. To see fluid again...so scared it's still there, or perhaps more.... Scared that this doctor will request another amnio since the previous sample had blood in it.

Anxious. Brings back memories of that first ultrasound on the 23rd, our hearts stopped for a moment when things took that drastic turn.

Relieved. To continue getting more answers. That the specialist will be there to read the results and help with the ultrasound instead of waiting for results. Thankful that we'll get to see and discuss results.

Thankful. Everyone we've talked to that's been to this doctor has nothing but encouraging words to say. Thankful also for our scheduled appointment on Monday to check heartbeat again and ask any questions we might have, and to review results.

This not knowing is so.... Can't even finish that sentence. Weird how one day we're filled with SO much HOPE and excitement that tests are coming back normal. Enjoyed a day of cleaning and playing with the kids, feeling her wiggle a lot and experiencing normal prego symptoms like heartburn today and nausea again, and found myself, as I was making Abi's bed and we moved her Tinkerbell wall decals from one wall over to her new bed, and moved the changing table {which I'd moved back into their room about 2 weeks before we found out all of this}, and found myself getting excited and thinking of a Pinterest project I'd thought to make for their room for Chloe {the cute letter monogram made from buttons}. But then there's that moment where I caught myself and thought too soon...get through this ultrasound...too soon...wait a bit more before we start buying stuff... We're so ready to hear she's going to be OK or that things are even more looking hopeful...

So please pray, and please pray hard. He hears even our groans and cries.

Specific Prayer Requests:
~Strength to get through these appointments tomorrow. Yesterday at the doctor's, when our nurse called us back, I'd had a little nerves, but mainly peace as we waited to be called, but the moment she did, my knees buckled when I stood and felt rubbery as we walked back...nerves have a way of getting the best of me.

~That we wouldn't need to do another amnio.

~Safety in travel / no car troubles {appointment is a hour away}

~Sanity for babysitter ;)

Specifically for Chloe:
~Fluid in brain and lungs GONE. Go big or go home, right? Let's pray the fluid is GONE.

~That kidneys and all organs are functioning properly.

~ That the possible clef palate isn't severe.

~That they would be able to see ALL 4 chambers of her heart.
Monday, January 13, 2014

Our God is a God of HOPE

We chose her name long before we knew it was a girl or boy. We chose her name before we knew we were pregnant this time. We chose her name because of our love for celtic music, and for the love Alan has for Ireland since he visited it, and to honor our ancestors of Scottish heritage. What we didn't know is that Chloe means verdant and blooming. But now we know how fitting her name is, as she continues to bloom within. 

Appointment today to check heartbeat was at 3:50.  We arrived early {for those of you that know me, this was a feat in itself}, and waited...waited...found on if they Loved It or Listed It...waited more...watching another pregnant lady be called back by our nurse that actually got there after us...watched the clock turn to 4:15, and then were finally called back. Turns out, God is good, and the results came in literally minutes before we were called back.

Our doctor seemed positive from the moment he came through the door. He explained the results had just come in and he'd just read through them and that he was cautiously optimistic. Cautiously because since there was blood in the sample, there's always a tiny slight chance that my cells got tested/cultured out instead of Chloe's. The one time our doctor somewhat wished it was a boy because it'd have proven for sure if it was my cells or my childs ;). However, he stressed it's highly unlikely this was the case, but it's a disclaimer he at least needed to tell us and was on the report.

The GOOD news: There are no chromosomal abnormalities!!! Chloe does not have Down Syndrome (Trisomy 21) or Trisomy 13 or 18. All tests negative for that. All chromosomes lined up correctly and nothing looks abnormal. Another test they did off this FISH test reveals if there's any other issues, such as intestines developing outside the body for example, and all of that looked good too.

What this means: There is still a chance things could be genetic, like with the heart. As of right now, our doctor is optimistic. He said he researched and studied Chloe's characteristics (i.e. the fluid in brain, fluid in lungs, heart, clef palate, kidneys) to see if there's some sort of syndrome that has these same characteristics and wasn't able to come up with anything, so for now, we'll have our ultrasound on Wednesday with the perinatologist to get a good reading on if the fluids are still in the brain and lungs, to see if we can still see only 3 chambers, or can we actually see all 4 heart chambers, to check the kidneys, etc. From there we take this one day at a time and continue to pray that God would continue to heal our Chloe.

One thing: There's a slight chance that our perinatologist might order another amnio to try for a more clear sample just to make sure. Our doctor reassured us that we're actually still within the window to do this and it's still safe at this point. He said we could either do it then and there up in Topeka or choose to do it here with him-our choice if this comes up. But he also stressed he doesn't quite think they'll order it-that he wants to get through the ultrasound before we'd do something like amnio.

He then checked her heartbeat, and had to wait a second because she was so ACTIVE and moving around :). Made this mama smile. He reminded me that because of where the placenta is that I probably won't feel her as much, and that it's still somewhat early to feel huge kicks, that it's good that I'm feeling even flutters, but that he's not concerned because of how active she is. And her heartbeat was good and steady.

We praise Him for good results. We praise Him for sustaining us. We praise Him for a doctor we trust. We praise Him for carrying us through this.

WE CONTINUE TO HAVE HOPE. And we ask that your comments and stories would continue to give us hope and be uplifting. 

Please know, we're not out of the blue yet...there are still many concerns, still much praying to be done and much healing to take place, but our God is big. Huge. And He hears our prayers. Please continue to pray for Chloe's heart-pray all 4 chambers can clearly be seen on Wednesday's ultrasound. Pray the fluid in her brain and lungs has gone down or gone away and that it's not causing pressure. Pray that her kidneys and bladder are functioning properly. And please pray for safe travels on Wednesday.

And praise. Don't forget to PRAISE HIM, and Him alone for all the good results today. Praise Him for all those praying for us. Praise Him that we can rest assured that HE IS IN CONTROL.
Sunday, January 12, 2014

No Results Yet-Please Continue To Pray

No results yet. Our nurse called Friday to let us know the sample is having trouble culturing out due to blood that got in the sample. Unfortunately, because of that, I got a call later saying the full amnio results probably won't work at all now, but there's another test they can still do from that same sample to at least check for Down Syndrome or Trisomy (whereas the amnio results would have given us a full panel on different possible genetic things). That test takes 2-3 days to culture out. It is too late and now way too risky to do another amnio. Please pray we receive news tomorrow (Monday) or Tuesday even, or at least before we have our appointments in Topeka on Wednesday (with geneticist and then a perinatologist for ultrasound).

No results means so much waiting. So much wondering. My prayer tonight, as I was outside with Isaac letting him run off energy and watching the hues of coral and pink tuck in the day, was that of, "Lord, let our faith in You be enough to touch even a thread of Your garment and heal her..." Praying He heals her. Don't get me wrong, I know many of you are saying {and have told us} to remember He might heal her in other ways {aka not here on earth}, and we are fully aware of that, but I choose to not cling to that just yet-I choose hope at least till we get the results, and then I choose hope through the rest of this pregnancy. Again, she's still alive, and we cling to Hope.

Prayer Requests:
-That test results would be in soon, and that in general they're able to get a good reading from this new test. We're told to bring every request to the Lord, as long as we're open to His will: Our request is that the test be negative for Downs or Trisomy in hopes that she's perfectly normal otherwise so she can fight this. 

-Strength to stand no matter what the results are.

-For safe travels to and from Topeka on Wednesday, and sanity for those watching our littles that day. 

-For endurance and strength for the appointments on Wed. I've been told to expect long appointments/long afternoon. 

-That she'd start kicking her little heart out. Not feeling her much the last two days, maybe a flutter or two. Not too worried as our doctor said that since we're really only just now hitting 20 weeks (today) that even a  normal pregnancy wouldn't be concerned if I don't feel any movement for a few days in a row or more.

-Praise for those holding us up in prayer. Your prayers are felt, and still needed more than ever. 

-Praise for those who are still dropping off meals, playdates with the kids, etc. Means the world to us. I honestly I have the thank you cards bought and sitting on the piano ready to write-cut ones with little flowers since her name means blooming, and sweet ones with glittery pink snowflakes...but honestly, I can't bring myself to write them just yet...this is all still too surreal for me to put pen to paper and say 'Thank you for being there for us during this time..." when what I should be writing are emails to craigslist listings for things like "baby girl clothes size 0-3 months and pink bouncy seat". Please know we are thankful beyond words, but I just can't do it yet. 




Wednesday, January 8, 2014

You're Gonna Have All of Me

Nervous for amnio results later this week or early next week. 
Scared for the genetic testing next week and high tech ultrasound to see measurements again. 

But no matter what, she's going to have all of us through this.


Tuesday, January 7, 2014

Monday's Appointment & Upcoming Appointments

We've debated how to address all of the "how did your appointment go?" questions. On the one hand, good. Answers were given to questions we didn't even know we had {"You'll see her bladder is small, but that could just be because she just peed and in reality it's ok."} Answers were given to questions we did have {"Yes, we'll set up weekly heartbeat check appointments and keep her monitored."}. Peace of mind and fears released was given on some levels {"No, I don't see any concern that she could pass at any moment. All the babies I've delivered that have Down or Trisomy 18 or 13 have all been live births..."}. And moments of grace and truth in the midst of the appointment {"Can I pray for you guys?" Of course, please do!}. Even a lighthearted moment when I told Alan to grab my purse because it had the list of questions in it, and Alan yanks it up and he and our doctor start discussing that it's more of a satchel and less of a purse.

But please don't be confused. This is still a very, very scary, difficult, uncertain time and situation. Yes our appointment went well in terms of we got answers, we found some peace, we have some hope. But the facts are still the same. Our doctor kindly and encouragingly went over our entire ultrasound-all twenty measurements that were taken, and one by one explained which measurements were considered normal, which were abnormal, and which were not seen due to position of baby. My heart sank hearing new news, such ask the issue with the kidneys is that one of them has cysts on it. Hearing again that the sono put "abnormal" next to face and he explained it's because it showed possible clef palate, but again, that it's early to tell and might have just been hard to see. He showed us the main measurements and explained how the average of the main ten or so is how they estimate due date. In our case, the measurements averaged between 16 weeks and 18 weeks, so the overall average was around 17 weeks, thus we are measuring 2 weeks behind. He explained that at this point, it's ok to assume that could be purely from dates (i.e. if I ovulated at week 3 then conceived as opposed to week 2), and that unless future ultrasounds show different growth, that for now it's just most likely due to dates. That gave us peace of mind as opposed to thinking her measuring small meant another complication...though, yet again, still could be part of it. Another slight sigh of relief is that there was concern with the heart with what chamber is missing because if it's on the left side and missing the left ventricle, there's great concern and low chances, however, if it's the right side that's missing there's much better outcome. In Chloe's case, her left side/left ventricle is ok. And again, far more news than we've learned so far. So thankful he went through the ultrasound in detail with us.

Going forward looks like this: wait for amnio results which should be in later this week or beginning of next at the latest, and our doctor will call us in asap when he gets them. I'm ready for them. I'm not ready for them. I'm needing to know what's going on, but I'm scared of the results. They're so...defining. In the meantime, we've set up weekly heartbeat checks to make sure it's nice steady beat. Thankful that he listened to it for nearly a minute to make sure it's nice and steady. Our doctor also is sending us to Topeka for an appointment with a genetic counselor and a more in-depth ultrasound to go over things again with a neonatologist. Every time I type that word - neonatologist - it gets this ugly red underline, yet when I click on it to see if I spelled it right, it's because the computer doesn't even recognize it...it's a foreign word to most of the world...we don't want to hear that word because it can be scary...and that's just how I felt when I wrote it on the calendar today while on the phone with our nurse. In fact, I burst into tears because it just felt so surreal to even be writing it down on the calendar. When people are expecting, they're filling the calendar with things like "baby shower", "shop for new carseat", "pick baby name"...not writing the name of the genetic counselor or neonatologist we'll be seeing...

Our appointment will be next Wednesday. Praise already for many people willing to watch the kids. Please be in prayer for safe travel/good weather/no problems with the car.

Please pray for peace as we anticipate the call of the amnio results. We're still clinging to the hope that it's not genetic or chromosomal (in other words, a miracle at this point)...Pray I can make it through this appointment with minimal sobs...

Please pray for God's will in this. We can pray till we're exhausted, but if it's not His desire, it won't be the desire of our heart. Pray the Holy Spirit will interpret our cries and groans when we are at a loss for words {there's been a lot of that on my part today}.

A more personal note: Thank you to everyone for their encouragement and support. However, I do have one request-we're holding on to hope. I'm thankful for all those who have written and encouraged us to talk with others who have gone through something similar-please know we're grateful and acknowledge how much you care for us and want to help, however, in the situations where they lost the baby, it's really hard to hear story after story of babies who didn't survive full-term. I'd ask that until we know that's certain in this case to please keep encouraging us with stories of hope. Please know that we completely understand (well, we don't understand at all on any earthly level) the possible negative outcome, but we're not allowing our hearts to go there just yet. In time, if that's the case, then we'll greatly appreciate talking to others who have been there, but until then: Chloe is alive. She is kicking. Her heart is still beating. She can hear us sing. She can hear her siblings fight. She can hear when Abi puts her mouth to my belly button like a microphone and sings "K-ohh-wee" over and over. She still lets me know she loves cherries, even though I don't. We want to soak up this pregnancy because we still don't know how long we'll have her after she is born {again, encouraged to hear our doctor say to plan on a May birth}. Because she is with us know, and we are forever grateful.



Sunday, January 5, 2014

Press Into the Wave of this Trail: Lean On Him

When I think I'm going under
Part the waters flow
When I feel the waves around me
Calm the sea
When I cry for help
O hear me Lord
And hold out your hand
Touch my life
Still the raging storm in me

In an email today from a sweet friend, she told me to "Press into the wave of this trial, friend." I first thought of the song above by Selah, and then thought of Jesus walking on the water {Matthew 14:22-36}. Jesus walks on water out to the boat the disciples are in, and they think they're seeing a ghost. Peter says, "Lord, if it's really you, tell me to come to you on the water." So Jesus says, "Come." Peter got out of the boat, but when the winds came up, he became afraid and began to sink, and cried out, "Lord, save me!" Immediately Jesus reached out His hand and caught him. "You of little faith, why did you doubt?"

I feel like Peter. I feel like I've had all the courage in the world to actually get out of the boat, and yet now, I feel as though waiting on the results, that I'm starting to doubt and sink. Not doubt God, just doubt in general that there's hope for Chloe...and yet I cannot, I CAN NOT let my mind go there. O me of little faith, why am I doubting???

Tomorrow we have our appointment with our new doctor. I'm encouraged. I'm scared. I'm hopeful. I'm terrified. And everything in between. 

"Lord, save me!"

We've had so much support, and read so many stories this week, even of friends, who have dealt with similar situations and the babies being ok at birth (two situations we heard of with fluid on lungs or in brain). This gives us hope. HOPE. 

Here's what one dear friend wrote me today: If there is anything you guys can praise God for right now it is HOPE. We don't know what the test results or future sonos will show, but we can certainly pray and HOPE in the Lord. 

The story in Matthew doesn't end there, with Peter being able to walk on water...
32 And when they got into the boat, sthe wind ceased. 33 Andvthose in the boat wworshiped him, saying, x“Truly you areythe Son of God.”
Jesus Heals the Sick in Gennesaret34 zAnd when they had crossed over, they came to land ataGennesaret. 35 And when the men of that place recognized him, they sent around to all that region and bbrought to him all who were sick 36 and implored him that they might only touch cthe fringe of his garment. And das many as touched it were made well.
I find it interesting that these two passages are right next to each other: the learning to trust next to the healing. I also find it comforting. 
Please keep us in prayer tomorrow, that our faith in Jesus would bring her healing, that even enough faith to reach out and touch the hem of His garment would be enough to heal our daughter. 






Friday, January 3, 2014

Sovereign Grace "O The Deep Deep Love"

...finding peace in this album today...

Sovereign Grace Come Weary Saints


Lyrics to Through the Precious Blood


You have ordained every breath we take 
In pleasure or pain, there is no mistake 
Gladness and grief, both are in Your hand 
And sufferings brief carry out Your plan 
And our fleeting sorrows
Will yield an endless prize
When some bright tomorrow 
We’ll see You with our eyes, and


Grace upon grace flows down, flows down 
Grace upon grace flows down, flows down 
Through the precious blood of Christ


Father of lights, Giver of all grace
Your mercies crown our lives all our days 
River of Life, quench our thirsty souls
For no true delight does Your love withhold 
And in every season
We are satisfied
For just one reason
Christ was crucified, and


All good gifts, every good thing 
Comes to us freely, so freely 
All good gifts, every good thing 
Comes to us freely, so freely 
Through the precious blood 
Through the precious blood






{from verse 2} of "O The Deep Deep Love"

How He watches o'er His loved ones
Those He died to make His own
How for them He's interceding
Pleading now before the throne


New Year: New Fear, or New Hope?

I can't lie. It's been a very hard two weeks. On Tuesday, New Year's Eve, a friend watched the kids while we ran errands, which gave us time to talk. Bless her heart, she had 4 kids ages 4 to 13 months, plus is over 20 weeks preggers. Where her energy came from that day I don't know. In a way it was hard seeing her for the first time since all this, but she's such a sweetheart that even when I say I'm not dealing well with other pregnant mama's around me right now, she just smiles gently, doesn't push me to talk, and sweetly sweeps my kids away for an afternoon of fun at the zoop (as Abi called it) watching the aminals (as Isaac calls them).

On Tuesday we had a sense of hope. Some peace. The first almost if possible normal day. And she was kicking, which made it better to feel that movement. We came home, was blessed with a meal by friends, and the 5 of us cuddled up and watching the original Disney Cinderella (I think Isaac enjoyed it more than Abi, at least the catch-chases-mice scenes), and Toy Story 1 and 2. Cozy. Just us. Family time.

After the kids were in bed, tucked away, surprisingly asleep, but not surprisingly due to the zoop earlier that day, we relaxed, skyped my mom, and then part of my "relaxing" so I thought was to check facebook, only to see post after post of friends that are expecting in the new year. And it hit. And it hurt. And I was so frustrated reading comment after comment about how people thought (ok, to be fair, to show how out of it I've been and tired my mind is, I literally just looked up to see that I typed the word 'thinked' instead of thought. *Sigh...*) 2013 was a horrible year, bring on 2014, or all the resolutions they were making, or all the things they are looking forward to (again, esp. those with babies to come this spring), and I was crushed.

Because I look at the new year and think, "Lord, how will we ever get through this? How will our kids handle this year? How will we handle this year? What will happen this year?" So many fears. So, SO many unknowns this year.

We've noticed sharing our prayer request on their own walls, or sharing the blog link, and we're so thankful for prayer warriors and those helping to spread the word to cover this child and our family in prayer...and yet at the same time, there's this surreal feeling about how you see these things to pray for others, but there's this weird feeling when you know they're praying for you, that the post is about and for you...

We are clinging to HOPE.

"We wait in HOPE for the Lord, for He is our help and our sheild. In Him our hearts rejoice, for we trust in His holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in You." Psalm 33:20-22.

And the Lord is good, even now. Even today some blessed things occurred that truly give us hope and our hearts more peace because it's the sort of thing we could have never orchestrated on our own without Him. So thankful for the way He provides.

There are hard days, and there are harder days. I'm not sure there are any days in between, honestly. There are days with minimal tears, no tears but instead fears/panics/anxieties, but that doesn't mean the days without those things are any easier. So blessed by our little ones who provide amazing comical relief (Alan, "Abi, are you sorry because you know you did something wrong or sorry you got caught?" Abi, "I sawy I git cot."  Alan, "Abi, crayons are not chapstick!" Isaac, "My belly is tired because he's powercord runned out of batteries.") And blessed by moments with them like tonight when Abi and I were singing Jesus Loves Me to Chloe, and when we sang, "They are weak, but He is strong..." felt her kick.

It's hard, but He is with us. Each day. Each step. Isaiah 43:1-3.

Prayer Requests:
1. We have switched doctors, mainly so that I have a full-time doctor as my last was part-time, and also because this doctor deals more with high risk patients. Please pray as my first appointment is on Monday and we have a list of questions. Praise that childcare has already been figured out for this appointment. Praise for the way in which God orchestrated this switch.

2. Praise that my new doctor's nurse has already called and even asked how I'm doing after the amnio and recommended I continue to rest until Monday...that took a ton of guilt from not cleaning/laundering/doing life in general off my mind. She also said test results should take more like 10 days, not 2-3 weeks, so we're praying for answers to come sooner rather than later. Continuing to pray that it's not chromosomal or genetic...

3. Pray for Alan as he adjusts back to work this week after a week and a half off. Pray he's able to get caught up and praise for him being able to work from home with his job-so thankful today that he was able to do that as I rested.

Your prayers are felt and we are ever thankful for them. Thank you again to those of you who have given us giftcards and brought meals. At first I didn't think meals this week was too necessary, but the Lord knew it was-especially tonight since Alan had gone back to work today and I was exhausted and too tired to cook tonight!! Thank you dear friends for that sweet blessing. And Chloe thanks you for the pecan cinnamon rolls.