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.

While I'm Waiting...

This is a song I keep hearing on the radio and I really like it! Thought I'd share...



The lyrics...

I'm waiting
I'm waiting on You, Lord
And I am hopeful
I'm waiting on You, Lord
Though it is painful
But patiently, I will wait

I will move ahead, bold and confident
Taking every step in obedience
While I'm waiting
I will serve You
While I'm waiting
I will worship
While I'm waiting
I will not faint
I'll be running the race
Even while I wait

I'm waiting
I'm waiting on You, Lord
And I am peaceful
I'm waiting on You, Lord
Though it's not easy
But faithfully, I will wait
Yes, I will wait

I will serve You while I'm waiting
I will worship while I'm waiting
I will serve You while I'm waiting
I will worship while I'm waiting
I will serve you while I'm waiting
I will worship while I'm waiting on You, Lord

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!

End of the Season...

I started this post before we left for the holiday, but I couldn't get the photos to uplaod...I'll try again...

Here are a few pictures of the boy's last games of the summer...it's been fun and the boys have sure enjoyed playing on a team. They have been learning a lot and we have so enjoyed watching the process!
Here are a few candids from his "boring" time in the outfield...
Drew enjoyed his season of soccer too! His highlight was scoring a few goals, but his favorite position was goalie.

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