A Break and A Blessing

My boys came back from Grandma's house today. It has been such a nice "time out" for me. I didn't get so much of "my list" accomplished, but it was a nice mental and emotional break. The boys had SO MUCH fun and I had some quiet time to rest, relax, read, think...and yes I did splurge for a pedicure :)

Another highlight for me was to go downtown with my dear friend Jen (and her new camera) to take some pictures. I can hardly believe that it has been 11 weeks ago since we thought we were taking the last pictures of our time with Joanna Claire. So...26 weeks and counting and it was definitely a milestone to document in pictures. It was a gift of time -wandering around, laughing, and capturing wonderful memories as I felt Joanna kick and move. Thank you, Jen, for your time, your encouragement, and your friendship.
We also swung by Lutheran Hospital to drop off the last of the "extra" photo books I had here at home. A nurse called the church to let us know they were all out! The staff are so thankful to be able to give these photo books to help moms continue to cherish the memories of their baby. Thanks to many of you who made these books and prayed for the moms and families who would receive them. Looks like we'll have to get together and make some more - maybe sometime in late August early September.

Tuesday I met with the doctor. Same old, same old...checked her heart, her head, her abdomen. Didn't get a good read on the heart rate - she's still falling right between 44-46 when I check at home. Fluid continues to accumulate. I asked if she was still measuring on schedule like she had at 20 weeks, but I was not so surprised to hear she is lagging behind now. Doctor's guess was about 21 weeks - though he only measured the head not the femur.

We mentioned we would be going to Michigan for a vacation in a couple weeks and he said, "Good, go. I think that's great." He'll send a copy of my records with us just in case anything should happen, but I'm not too nervous, I know God's timing is perfect and I'll just have to continue to trust Him. It was nice to get such positive approval from my doctor too!

He said when I get back in August he'd give steroids to me/baby to help her lungs develop. He mentioned briefly a couple scenarios we'd discuss in more detail if Joanna's heart is still beating come September. He mentioned he didn't want me to feel like an experiment, but that there was a procedure (he gave me the medical name, but I can not remember) where he could insert a needle into the baby's abdomen and take out some fluid. This would help me to be able to deliver naturally (because her belly is so bloated with fluid) and he said it'd be a whole lot easier to resuscitate her if they needed to after she was born. I'm not getting my hopes up, but it's nice to see him covering all the possible bases...God has shown his predictions to be wrong so many times - the doc has to be ready for anything with this little girl!

I'm amazed at the difference between the doctor in 2 1/2 years. When I saw him with Noah, my visits were so impersonal - in, out, quick, to the point, abrupt, even offensive at times. I no longer feel like a number, a record, or a file. He sees me as a mom, a wife, a MOTHER. He takes time to talk, process, and really listen to what we want. His attitude has changed - I know he respects our ethical choices (he did with Noah too), BUT he's CHOOSING to have a different attitude as he interacts with us. Little Joanna Claire is truly living up to her name, shining a light in that office that he is really grappling with. I marveled after this last appointment as I watched him step back toward the sink and away from the door and begin chit-chatting about our vacation and Michigan golf courses with Mike...wow, we've come a long way. I'm thankful for the changes in his thinking and that God continues to "let me in on" this transformation.

I guess that's about it for now. Thank you for caring about us. Thank you for taking the time to read our updates and bring our family before the Lord.
A verse comes to mind...2 Corinthians 12:9 "But He has said to me, 'My grace is sufficient for you, for my power is made perfect in weakness' Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." I'm thankful for the strength he gives me each day just to put one foot in front of the other. I most surely would have given-up by now if I relied on my own strength. His grace is sufficient!

Final Touches & Update on Joanna Claire

I sat on the couch after my appointment yesterday and finished off the blanket I made for Joanna Claire. Nothing fancy, but a special little blanket made with love by her momma. I tried to take a couple pictures, sorry, not the greatest. But, I love how the ribbon and bows in the corners turned out IRL (in real life). I also stopped at Babies'R'Us yesterday to see if I could find a preemie outfit. I sat in the parking lot, after hanging up on the phone with my mom, tears streaming down my face thinking back to the day we went inside to find a preemie outfit for Noah to be buried in. I wiped the tears and checked to see just how red they looked behind my glasses and composed myself enough to walk in and accomplish the task. I wanted something that would go with the purple blanket...though most everything I found was pink, I'm happy with one outfit I found with purple and pink butterflies. Hopefully it will fit. As I checked out the lady tried to make small talk..."Oh do you know you're going to have a little petite one?" "Yes, we do." is all I could muster up and out without a flood of tears. What a crazy life I have!! Lord, what are you going to do through Joanna's life? I know that in spectrum of eternity, that these months I carry her will be like a blink of time, but right now in the midst of it, it seems like it will last forever. And not just once,now, but twice?!?!

Trent and Drew make comments like, "You can play catch with me when the baby's out right? When the baby's out, you'll go swimming with us then?" They see/understand much more than I give them credit for and I wonder how this will affect them. It's hard for me as their mom to have to sit on "the bench" and watch life go by and then have nothing to "show for it" once I deliver and come home. I'll have jump right in and be "normal" again although my thoughts and emotions will again go back to sitting on "the bench" and thinking/dreaming of what I'm missing out on as mom of 2 children in heaven. Does that make any sense?

Going back to my appointment earlier in the day, Mike and I sat and waited to see what had changed over the last week. I counted 42 bpm on Sunday and on Tue I got 44-46 bpm. This morning the doctor counted 46 bpm. She is slowly declining. I think she was in the 50's for a few weeks though, so maybe she will stay in this same slow pattern of decline. Who knows! The doctor looked closely at her heart to see it from all different angles and mentioned that last week he really tried to see where the fissure was. He said that two other parts were not crossed and that the atrium was only one space not two. I think he really took time to see if it may be worth it to have an amnio to determine if there were bigger issues- meaning chromosomal. He assured me (like last week when I asked) that the best thing would be to test the placenta after she was born. I interjected, "because there is nothing that can be fixed?" He replied, "Yes." He commented on the interesting pictures he was looking at on the screen. He quietly said, "I'm sorry, I wish it wasn't you and your baby that I'm looking at." He pointed to the screen and showed me her intestines floating in fluid - a little white pyramid all surrounded with black. He moved the probe and showed me her liver and a lung again all surrounded with black. He looked at her head and said there is some edema present. From what I understand it is swelling and accumulation of more fluid caused by the heart failure. My mind wonders just how normal she will look when she is born and I am scared for just a second. How much more can she take? How much more can I take, Lord?

He looked at Mike and said, "I know that Kristin would throw herself under a bus for her kids, but I want you to be watching for unexplained nausea or vomiting and swelling. If you see this, do not pass GO or collect $200, come in right away. Her blood pressure looks ok today, but her placenta is very large and it could begin to release toxic fluid to mom, causing toxemia. I will blow the whistle and put my foot down at that point."

As he wrapped up his time with us he said, "I'm so glad you have 2 healthy boys to give you your inspiration." He continued to say that he'd attended the funeral of a trisomy baby he delivered by elective c-section (new change in his practice!) that lived for 3 days. He paid them a big compliment and I hope he'd say the same thing about us. He said, "I went to the funeral and if there is anyone who has made lemonade out of lemons, they did it." It is not my boys that give me inspiration to go on one more day, though they do keep me smiling, I hope he sees it goes much deeper than that. It is God who gives me what I need to make it through each minute, each day, each week - now for 25 weeks. I know he sees the difference in us and in a few other patients. He has shared some of how he is processing it all. I think he is really wrestling with how they mesh - intellectual medicine and the value of each life. I'm thankful God is allowing me to see and hear these little glimpses into his life and thought. It encourages me to continue to "do the right thing" when my head and selfish heart just want to be done living in limbo and begin moving on.

What's in a NAME?

I have been looking and thinking and waiting for some revelation as to what to name our precious little girl. Boys names come easy for us...I guess we've had a little more time to think and accumulate them since Trent is now 7! Mike and I had some ideas early on, but I wanted to focus on her name's meaning.

It has been a long 6 months!! She has made it to 24 weeks (yesterday) and she is a testimony to the grace of God. Our family is a testimony to the Grace of God, were it not for His strength and His peace and His faithfulness, I don't know how we'd have made it this far. Her name, (insert drum roll and cymbal crash here) JOANNA will always remind us that "God is gracious." I learned, just today, that this name is found twice in Luke - Joanna was one of three women mentioned who gave to help finance Christ's ministry. Again she is named with the two Marys in Luke 24:10 as one of the women who went to the empty tomb and were met by 2 men/angels and then reported what they had seen and heard to the apostles. Anyways, just an interesting tidbit I thought. Her middle name CLAIRE means "shining light." I can't think of a name more fitting to remind us of the impact our daughter's life has had on others, and specifically our doctor! She has proven to be stubborn and persistent in proving that God is in control of the life and breath of all mankind. Our doctor can try to predict, he can think he knows best -but his heart is softening to the meaning and value of each life. He has processed out loud with me some of his thoughts these last two weeks. My mom and I left amazed last week at some of the things he shared as he must reconcile our daughter's life with what he has medically known and practiced for 20+ years. It renewed my strength, accountability, and reliance on God despite the emotional ups and downs of this journey, and selfishly wanting to "move on" and begin this journey of grief. However, seeing a glimpse into how his thought process and values are not lining up with the lives of his patients is really making him rethink some things, or at least his attitude toward the choices his patients make for their unborn child knowing that the outcome will still be the same if it were "sped up" or allowing nature to take its course.

It is my prayer that Christ's light would continue to shine through Joanna Claire's life that all may see and know that with "You [God] is the fountain of life; In Your light we see light." Psalms 36:9. We are excited to call her by name and are so blessed by those of you who continue to pray for our family, and our precious little light.

Blessings friends...

**UPDATE** on my appointment:

Her heart rate is still slowing. It was 44 bpm. She is not moving as much, not even as a reaction to my pushing, poking, or squishing. :) The doctor said this is probably due to the fact that her abdomen is so bloated with fluid that her belly is actually pushed up against me. Not much room in there. He said her belly is still small enough to deliver normally, but that is a concern down the road. He said the next course of action, if she hangs in there another 2-4 weeks will be to give her steroids to help develop her lungs. [From what I gather, this is just procedural (covering his back) as the possibility to deliver prematurely is high and this will give her a chance outside of mom if she were to miracuously make it through loabor with a heartbeat.] Though he's said more than once that that is pretty much impossible.

Thanks for lifting us up in prayer, friends!

4-D

Today at my appointment I found out that our baby girl has more fluid around her heart. So after about 3 weeks of everything being the "same" it looks like things are getting a bit worse. He wasn't able to measure a heart rate, though he looked and listened to it for about 15 seconds. (I continue to count it at about 50 bpm when I can find it at home on the doppler.) I asked him if I could see her in 4D and though this picture isn't the best it was really neat to see her on the screen!! It's the first time I've seen one with any of my kiddos. For the last few weeks he's let me set up my next appointment as far as the date goes, but today he said he wanted to see my back on Tuesday morning, and just to call if anything happened before then. I know he probably has another hunch, but decided NOT to share it with me :) I guess he's learning that anything is possible when it comes to Koning babies (Noah and our girl)! I asked about brain activity and he said, "it's very primitive but she is not suffering." I just wonder how she continues to move and grow with such an ineffective heart- making for insufficient blood and oxygen flow. He started to say, "I can't imagine that Tue...well...I'll just see you on Tuesday."

So my roller coaster begins another trek up, up, up a steep hill. As I listen to the warning of the coaster's clicking, I wait for my heart to beat faster and my palms to get sweaty before I just can't hold my scream in any longer. Then comes the quick emotional rush to the low of lows. It's hard living day by day wondering if "this" will be the day she kicks for last time. My strength is definitely dwindling...I think about just being "done." Thankfully I don't have to rely on my own strength!! His grace is sufficient for each day, hour, and minute. Thank you for the many times you faithfully pray for us. You are such a blessing to me especially!

Quick Update on our baby girl...

Last night my computer decided to "get sick." I'm looking at 3/4 of a blurry screen(so forgive any typos!) that is only turquise and yellow and green! Hopefully it's something we can get fixed quickly, but I'm frustrated by the timing!

Anyways, I just got back from a pretty uneventful trip to the doctor. I started by letting him know I regularly feel her move and that it surprises me that she moves so actively likeI remember with my other kids. He didn't really say anything. While taking a look, he said it was hard to get a reading on the heart rate because sometimes it beats steady and others its very abnormal, so he guessed that it averages out to be about 60 bpm. He looked at and measured the head (she is head down now) and the leg and said she is measuring "right on." He said, "I can't tell you she looks any worse than last week, if not better." So he left it up to me as to when I come in, "he's just along for the ride." He's said this before and I have to wonder what he's thinking about this ride in that intellectual head...how and why this is happening! I told him a lot of people were praying with me that she would hold on for at least another week while my mom was out of the country. As he walked out he smiled and said, "All you have to do is look at my stock portfolio to see how I am at predicting..." He laughed to himself and shook his head as he leaft the room. I'm scheduled to go back in next Thursday, meanwhile we'll continue to take one day at a time and I'll enjoy all the kicks.

Thank you for your continued prayers for our family. We can't thank you enough for helping us carry this burden!

"Behold, God is my salvation, I will trust and not be afraid; For the LORD GOD is my strength and song, And He has become my salvation." -Is. 12:2

20 weeks + 2 days

I headed to the doctors office again this morning with 2 boys in tow. Mike met us there and they enjoyed an old Superman cartoon in the waiting room. Words are hard to find today...it's mostly been tears and lots of dialog with the Lord...I'm weary.

I wish it was easier to trust...His plan, His timing, His ways, His purpose; trying to reconcile my daughters life and purpose, my pain, my fear, my tears.

As I wander down my hallway, I stop and often stare at the reminders I made and hung shortly after we said goodbye to Noah.

It's hard to believe we are wandering through this Valley of Weeping yet again...not that I thought we'd have an automatic pass telling us to move directly to "GO, collecting $200" after Noah either. But it's hard to walk this same road, that of losing my child. What more do I need to learn? What didn't I "get" through my thick head the first time? Is it something about myself that I need to examine, or is it so that the works of God may be displayed through [her] (John 9:1-3)? I don't know - I won't know on this side of heaven, and I'm trying to just be ok with that. His grace is sufficient for each moment, each day, each week. I follow a blog by Angie, the wife of Todd Smith - the lead singer for Selah, and she hit the nail on the head here.

Angie writes..."Several people have written me over the months and they have asked me this question in many different ways. 'Do you believe that God was responsible for taking your baby? How can you love a God Who would do that?' Here is my answer.
I don't know why she is gone, but I do know Who had the final say. And it wasn't the snake.
And because I know Who, I am willfully unconcerned with why. "

I am willfully unconcerned with why. I can say most days, I feel this way- His grace allows me to say this. I just wish I could say this everyday with certainty! It's hard when I'm weary of walking this road.

Dr. W counted her heart rate at 47bpm today. He showed me the entirety of her profile on the screen...I saw a large black abdomen - fluid just completely surrounding everything. I can't believe that I can feel her move with such force sometimes...I imagined she'd be lethargic with such a slow heart. He said, "I know I've been wrong and haven't predicted a time frame the last couple of weeks, but I don't think by next week we'll have a heartbeat."

I'm weary...of this roller coaster. Physically watching my belly grow, and emotionally as our bond grows - it weighs heavy. The wondering and the waiting - it drains me. Thank you for praying us through this gap. Some days I haven't the words.

Please continue to pray for peace and rest as we wait. My mom and two brothers will be traveling to Israel for an amazing trip through the Holy Land beginning next week. I'm trusting that the Lord will work out the timing of our daughters arrival and my families travels. He knows my desires and so I'll lay them down at His feet and trust that His plan is perfect. (I just wish I could have a sneak peak, to see how it all works out.)

I look forward to the transformation of our Valley into Refreshing Springs...I know He is faithful to see us through.

With Love and Gratitude to our Saviour and our Friends,

The Konings

Baby girl

Well I'm just shy of 20 weeks. I can hardly believe we heard the doctor tell us "she would have no heartbeat tomorrow"...and that was 3 weeks ago. The doctor told me today that he really didn't think I'd make it through May. But as he saw her heart still beating, he told me "he's just along for the ride now." He said that the 50-60 bpm we continue to see/hear is from the ventricle. It is programed to beat at that rate regardless. The problem continues to be from the atrium. It doesn't seem to be working - it is just full of fluid. I asked how it was possible for her to even survive on 50-60bpm and he told me, "I can explain it." Later, he looked at the brain and turned on the blue and red color, it seemed as though their was brain activity, though he didn't say so in words. He reminded me as he's said before that the demand on her heart will only increase, but he can not predict when it will be "too much." As long as I'm healthy, he is willing to watch and care for me during this pregnancy. He told me he is seeing 3 other families right now who have chosen to continue their pregnancy as we have. I truly believe that the Lord is softening his heart...how can this not?

He said there is only one way he'd begin "pushing buttons." He said it isn't likely, but it is a possibility. I could get something called mirror(s) syndrome (he commented that I wouldn't find it on the internet!) Basically, the placenta would become so full of fluid that it would become poisonous to me and cause toxemia. That is the only way he would "push buttons" for me to deliver in spite of her heart still beating. Then he said, "After seeing your 2 boys last week, I'll be 'darned' if I let anything happen to you!"

I saw lots of black on the screen, indicating fluid. He showed me her intestines and liver just "floating around" in fluid. He said that she has some in her neck also. I asked about what she'd looked like after delivery. I asked if she'd look bloated? He said, "like the Michelin man, but not so big that you couldn't deliver." I picture it like the little bloated Ethiopian babies I've seen in pictures. I asked if there would be any other physical thing that would be abnormal. He said, "no, she'd look perfect." Again, he's admitted he's just along for the ride. What a crazy ride it is for us! Don't' have to understand it, just have to trust that God's ways and timing are perfect! Easier said than done some days, so thank you all again for lifting us up in prayer! You all have been such an encouragement to us. We are clinging to the hope we have through faith! Thanks for taking our hand, helping us up, and walking beside us down this rough road.I'm so thankful for our first two blessings!!! What joy they bring to our home!!!

Doctor visit

Yesterday I took my boys with me to see the doctor. They mostly enjoyed the train table out in the waiting room, but did get a peek at their little sister and her heart on the u/s screen. They were well behaved and the doctor said, "Thanks for being so polite boys" as he left the room. A mother always loves to hear that!

Almost every time Mike and I go in, the doctor asks how many kids we have at home - and comments about how he's glad we have 2 healthy ones at home. Yes, we are too, but they can't replace Noah or this little girl we've been looking forward to having for so long. He just doesn't quite get it, but I know he's trying. He sees plenty of women who try an try and still have empty arms. He commented on how this affects ones faith. He thinks it might be different (our attitude, our faith) if we didn't have two boys already. All I know, what I choose to believe is that no matter what God is in control, His is faithful, and He is good.

The doctor said fluid is still accumulating, but calculated her heart rate at 60bpm a little faster than where it's been at 50. I asked, "So, what are you thinking?" He replied, "I'm not in that business anymore. I've been wrong the last to weeks, so I'll just plan to see you back in another week." I'll go back in again Wednesday.

**I couldn't resist putting up some pics of my boys from Trent's first baseball game last night. He did super. He had two catches and hit the ball each at bat:) It looked like he had a lot of fun. He played against 2 other boys from church, so it was fun to see them all out there playing together.

Drew, on the other hand, had fun gathering "porcupines." (he really was proud of his pile of pine cones!)

Watching and Waiting...

Monday I did go in to have a check-up, it was more of the same, so I didn't post anything. The heart rate was 55 bpm and fluid was obviously building up in the abdomen and around the heart. He asked me to come back in Wednesday.

Some of you know, my mom rented a fetal doppler for me. It has been so nice to pick it up whenever and try to find the baby's heartbeat here at home. I was a little nervous (before I could really feel the baby move) that I wouldn't know when/if she died. So this has been such a "peace of mind" thing for me. FYI- I've been feeling her move a lot lately...most of all when I was having my pedicure...guess she's destined to be a girlie girl!

So all that to say, Wednesday morning after I got up, I checked to find a heartbeat and I found one...50 bpm. I called the office and asked if I really needed to come in, and the nurse said not Wednesday, but definitely before the end of the week. I already had an appointment scheduled for Thursday -so I decided that would be a good time.This morning, I walked into the office confident, having already found the heartbeat this morning. Sure enough as I looked at the screen and saw the pulsing white blob, the doctor said, "I know you weren't born yesterday." He really has no explanation (medically) as to why our baby girl is still alive. (though we know - like Job - that God holds "the life of every living thing, and breath of all mankind." Job 12:10 He is revealing Himself through our little girl.

Our doctor explained more about why the heart is not working. There is a large opening between the left and right ventricle and it is filled with fluid. The right ventricle "knows" to pump without the command/impulse from the 'atrial septal' (I think that's what he called it) This impulse is only getting through 1 out of 7 beats - so it's pretty ineffective! I asked about any other abnormalities especially the head and the presence of fluid. He said, "It looks better than before." He also prefaced this by saying, "I don't want you to get your hopes up, I can tell you this because of how you've been handling everything so maturely, the outcome will be the same as 2 years ago, but the heart actually looks better than Monday. It was swimming in fluid Monday and today it's just not." He also said he's, "done making predictions, but he wouldn't be surprised if come June baby was still ticking." Wow that's different than what we've been hearing these last 2-4 weeks -doc just trying to predict when her heart WOULD NOT be beating.

He also mentioned that he thought our girl had Trisomy 13...I'm not totally convinced yet because he hasn't given any other indication as to other abnormalities, so he's just going on the heart issues. I'll have to research this a little bit more. Who knows! But like he said earlier Trisomy 13, like Noah's Meckel-Gruber, is fatal. He said he'd see me next Wednesday. After he left the room, I looked at Mike and my nurse and I just laughed. What is the Lord up to?? The nurse looked at me and shared, "You're really messing with him! He's stumped!"

I've been so prepared to have to say goodbye this last week, that it's nice to think I could have another week to enjoy being pregnant and feeling my little girl twist and turn and kick within me. Again, thank you for praying!!

Just because...I finally decided to just go and buy some yarn to make a blanket. I've wanted to for a couple weeks, but just thought I wouldn't have time to actually finish it. So, I started it last night and I got a fair bit done :) Something special for my little girl. Made with love and prayers by her mama.

And then last night, after the kids were "in bed" (remind me to post a "Not Me" Monday post about this) some friends came over to plant a pink lily they had bought for our little girl. It's beautiful and it was such a thoughtful expression of love for our family. I'm excited that it has lots of buds, so we can enjoy lots of flowers in the weeks ahead :)

Many of you have asked about a name...we would share, but we haven't decided yet. I've been scouring a couple books I checked out of the library :) Mike and I both would like to find a name with a special meaning...so you'll just have to wait...

Micah 7:7 "But as for me, I will watch expectantly for the Lord; I will wait for the God of my salvation. My God will hear me."

WELL...

**Update**I ADDED SOME FAMILY PICS(Thank you Jen!)**

I'll start with yesterday's events. I was getting antsy wondering what was going on with our little girl. I didn't think I could make it another week before going to the doctor to find out. So, I called the office and they let me come in to see one way or another if there was a heartbeat. Actually, I was prepared to hear the worst- just kind of a bad feeling. But to my surprise, as I watched to screen, I saw a little white thing pulsating. It was slow, I could even tell, and the doctor said that it didn't look good.(Today the nurse told me she thought the rate was in the 30's.) He was pretty confident that we would not find the heart beating Friday. He said that "we wouldn't be making the decision." Our baby's heart would not last much longer. He gave us the option of going to the hospital to induce then, but said he imagined that we wouldn't feel comfortable doing that WITH a heartbeat. We agreed and told him we didn't want to induce until there was really no heartbeat. So I left, starting to mentally make a list of all I wanted to do before Friday.
My friend Jen met us this morning to take some family pictures. (and "belly" pictures for me :)) This was something I had been wanting to do, but didn't really expect it would need to be done today. After the pics, I called the doctors office and they told me to come right in. I was as prepared as I could be to see a still heart and then proceed with an induction. Again, to my surprise, I saw a little white heart pulsating on the screen. The doctor said, "I guess the baby didn't get the memo." He said each time he sees the baby getting progressively worse, more fluid building up around the heart and in the abdomen. The heart rate was still slow at 76 beats/min. So again, we wait. Monday I'll go in to be checked again. Evidently, he still believes the heart will give out this weekend and wants to check again Monday.
"Wow Lord, what's going on here? I thought I was all ready, and now I have to put my life on hold for a couple more days. This roller coaster of emotions is unbelievable. I'm so thankful for more time, as hard as it is not to be able to 'move on' and begin the healing. Tonight I have felt, more than ever, flutters in my womb. My little girl is making her presence known! A gift I will cherish. Thank you for this time, but help me as I wait for the inevitable. I'm trusting that your timing is perfect, help my heart line up with the truth I know in my head."
I read this on the journal page of Steve Green's website. It is a quote from Charles Spurgeon's Morning and Evening that was an excellent reminder for me. Thanks for your prayers!!

"God is always thinking upon us, never turns aside His mind from us, has us always before His eyes; and this is precisely as we would have it, for it would be dreadful to exist for a moment beyond the observation of our heavenly Father. His thoughts are always tender, loving, wise, prudent, far-reaching, and they bring to us countless benefits: hence it is a choice delight to remember them. The Lord always did think upon His people: hence their election and the covenant of grace by which their salvation is secured; He always will think upon them: hence their final perseverance by which they shall be brought safely to their final rest. In all our wanderings the watchful glance of the Eternal Watcher is evermore fixed upon us—we never roam beyond the Shepherd’s eye. In our sorrows He observes us incessantly, and not a pang escapes Him; in our toils He marks all our weariness, and writes in His book all the struggles of His faithful ones. These thoughts of the Lord encompass us in all our paths, and penetrate the innermost region of our being. Not a nerve or tissue, valve or vessel, of our bodily organization is uncared for; all the littles of our little world are thought upon by the great God. "

Ultra sound Update

How do we begin…where do we go from here? I can tell you that after Noah died I felt a peace about having more children…that God would not allow us to go through this again…well, in some respects that is true, but the heartache we feel today is the same as the day we learned about Noah’s problems. Our baby girl (the doctor said, "I think were pink" anyway) does NOT have Meckel-Gruber syndrome. In fact, the specialist said that if we did an amniocentesis we’d probably find all the chromosomes normal. So although we are not walking down the exact same path, we find ourselves on a different path that leads to the same end. Our baby girl is in heart failure. Those words that stung my ears, seemingly out of the blue two weeks ago (that “your baby is not in heart failure”), are indeed what I feared and prayed so hard not to be true today.
What the doctor saw this morning was fluid building up in the belly and liver, a very irregular heartbeat, and a heart rate of 75. (Half the normal rate of 150) Signs are pointing to the heart not working/pumping like it should. As the baby grows the demands on the heart only increase and so the doctor told us that it would be likely that when I go back in two weeks there would not be a heartbeat.
I was “prepared” for a Meckel-Gruber diagnosis and was relieved that no symptoms seemed to be present during the previous ultra sounds. I was so NOT prepared to hear that my baby really would not survive another couple of weeks.

Lord, I’ve been here before, I thought I learned a whole lot from Noah…what are you doing now? This is not supposed to happen, right? I know in my head of your faithfulness, your truth, but help my heart to fall in line with my head! I know that the road of bitterness is not for me, so instead- I choose to trust, but it is just so hard. I will cherish the time I have with my daughter now, thought things would be different…you know maybe ponytails, and ribbons, and dolls, and shopping, and long conversations over the phone or coffee…

I asked the doctor how common this heart failure is for babies, I was surprised to hear 1 out of 500. He said I’m unique because we don’t usually see patients for u/s at 11 weeks and so we’ve seen the progression. Normally we’d have a mom come in around 18 weeks for her u/s and just find no heartbeat. He said,” it’s like you got hit by a bus and a golf ball at the same time.” (At least he toned down his example a bit from the Potter’s experience and said golf ball instead of ‘shot in the back’)!

He did say some kind words to me as well, which Jen and I specifically prayed for as I drove to my appointment. He asked Mike if I “was ‘always like this’ understanding that our culture doesn’t handle these diagnosis’ or outcomes with grace. Most people throw their heads back in a Job like moment and ask 'Why me!?'” Mike then said, “we don’t what anyone to lose the message.” The doctor said, “I get the message, you’ve helped me see things differently. I learn more from my patients that they learn from me sometimes.” WOW was all I was thinking…maybe we are making a small impact on how he sees life and the value of it in this world.

He said more than once, “I’m so glad you have two children at home.” Yes, we are extremely thankful for the two children God has given us to raise, but we will always remember the two other children He’s given to us, me especially to carry, for just a short while. They can never be replaced – each unique and special, made in His image. Don’t know the why’s, but we know and trust that His ways are Higher than ours and His ways are Perfect.

“Hear my cry, O God; Give heed to my prayer. From the end of the earth I call to You when my heart is faint; Lead me to the rock that is higher than I. For you have been a refuge for me, A tower of strength against the enemy. Let me dwell in Your tent forever; Let me take refuge in the shelter of your wings.” Psalm 61:1-4

Thank you for your love and support. Words can not express our gratitude and the encouragement that they give. Continue to pray for us, and the baby…we know the reality, but we also believe in a God who can work miracles.

Hope Clinic Banquet

Many of you prayed for Jen and I last Thursday. I thought I'd share a little bit about that night. We estimated there were about 240 people in attendance, and from our conversations with the men and women afterwords there was quite a mix of people (yes, including the Amish family that came up to share about the 3 sons they had lost). I wished somehow we could have presented the gospel more clearly, although, Mike assured me that people could not deny hearing the different ways we shared about having a personal relationship with Christ that night...NOT a religion, but a relationship. I do pray that Noah and Owen's lives continue to speak to the hearts of those that heard that night. He is truly the God of the Calm and the Storm. I have to say I could totally feel your prayers, as I was speaking, the words seemed to flow more as in a conversation and less rehearsed and read (which I wasn't sure would happen considering all that is heavy on my heart about baby #4). I looked down to see steady hands-not the trembling fingers and knocking knees- as I turned page after page...I guess by the 5th time around I'm getting more comfortable in front of a crowd. Can I just say - GRACE of GOD. I do have to say it was nice to see some familiar faces. My good friends parents, one of Mike's co-workers, and even a mom I met at support group almost 2 1/2 years ago.
Thanks again for your prayers...I look forward to seeing/meeting the lives touched by our boys when we reach heaven.

Down this road before...

Thank you for all your love, support, and prayers! I really drew strength today knowing we'd be lifted up before our Father's Throne. This follow up didn't go as smoothly as I had hoped. The specialist and his ultra sound tech looked at the heart first. The pattern was still irregular and the heart rate was 112 (normal being from 120-160). The doctor said it was too early to see the actual structure of the heart to see why the heart is misfiring. He reassured us by sharing that, "the baby is not in heart failure." Of course I swallowed really hard at this comment wondering if that is where we're headed. I'll go back again in 2 weeks to hopefully get a better look at the heart's structure.

The tech also found a bit of fluid collecting at the back of the head. She measured it at .8 and under 1.0 is considered in the high range of "normal." Memories of Noah's diagnosis flood my mind, but I remind myself that we'll must take one step at a time and face each hurdle as it comes...not before.

The specialist left us by saying, "just continue to think happy thoughts these next two weeks." "Oh great, yeah sure," I thought at first - "that's how your leaving things with us?" But I know that we have something even better that we can do than "think happy thoughts." We'll be on our knees asking, probably more like begging, the CREATOR to help our baby mature and grow into a healthy child

As I lay on the ultra sound table, a very familiar face came in to let me know Mike had arrived. It was my wonderful nurse Susan. I looked forward to seeing her each visit with Noah. She gave me a big hug and she said how often she thinks of us. With tears welling in her eyes she shared how we had impacted her personally by carrying Noah. What an encouragement...she is a dear lady who is a shining light in an office where so often it is suggested to terminate a pregnancy. She has been an advocate there and shared with me a few times how she has used Noah's life as a reminder to the doc that we DO bond with our baby and enjoy that time being pregnant because often that is the ONLY time some women may get. She said she would fervently pray for us the next two weeks, and we would ask you to do the same as well. It's really hard not to think that we may be headed down such a familiar path, one that is so treacherous. But as I sat in the car listening to the radio, I realized I had zoned out until I heard these words...

But the voice of truth tells me a different story

the voice of truth says "do not be afraid!"and

the voice of truth says "this is for my glory"

Out of all the voices calling out to me

I will choose to listen and believe the voice of truth

There were/are so many things going through in my head, but the truth is I need only to listen to one voice and He says, "Do Not Be Afraid! This IS for MY GLORY! I am with you always."

Good News...

Mike and I are excited to share that we are EXPECTING baby #4. I'm 13+ weeks and we are due October 24. We covet your prayers tomorrow as we go see the specialist for a follow up ultra sound. I was sent down to see te specialist when I went in at 11 weeks because they were concerned about a slow heartbeat. The u/s tech did a lot of measurements of the head and was able to tell us that everything was measuring normal at that time. We were told the slow heart rate could have been caused by an immature electro impulse system. The specialist said, "I could scare you with all the possibilities, but I remember you don't scare easily." Maybe I did make a small impact last time with Noah :)

We left 2 weeks ago not with terrible news, so that was good. I was at peace with "wait and see." Tomorrow we'll see baby again! We are praying that their heart continues to mature and that they got our good genes and won't have Meckel-Gruber Syndrome. We have confidence, however, that God's plan is GOOD and He will take care of us no matter what the outcome may be.