An Uncle's Thoughts

As I wait to pen my thoughts and the events these last few days, I wanted to share the letter Joanna's uncle wrote. I think it captures perfectly my heart as well. THANK YOU for this SPECIAL GIFT, Kevin.

To my tiny niece Joanna,

I'm so glad I got to see you, Joanna, the day that you were born.
All bundled up, I held you, such a tiny baby's form.
Little Joanna Claire, such a great big shining light.
You have shown us God is gracious, and that His timing is right.
Without speaking a single word, you've already said so much.
Kicking in your mommy's tummy, did you know how many lives you'd touch?
See, just like your older brother, you are fulfilling your design,
God made you with a special heart, that now beats in perfect time.
You've shown so many people that God controls all of our days.
You are proof to the whole world that God is perfect in His ways.
We can not always understand why things happen like they do.
But we are certain that God is Love, because He created You!
I'm a little disappointed, Joanna, I have to wait so long,
To get to know my little niece, and ask you how you are so strong.
So til we get to see you, Joanna, we'll feel like we are apart,
But we know that you're with Jesus, living in rhythm with His heart.

No words...

Joanna Claire was born at 7:28 am this morning July 28. She was a full 26 weeks old. She weighed 2lbs. 13 oz. and was 12 in long. Her hands and feet were so tiny. Thank you all for your prayers, I have felt a real peace today.

I wanted to share the lyrics to the song I kept thinking of today...

He Knows My Name

I have a Maker
He formed my heart
Before even time began
My life was in his hands

I have a Father
He calls me His own
He'll never leave me
No matter where I go

He knows my name
He knows my every thought
He sees each tear that falls
And He hears me when I call

Joanna Claire's with Jesus

My tears are flooding over as I play the confirmation I got from the doctor just an hour and a half ago over in my head. Emotions and thoughts are overwhelming as I anticipate all that will take place in the next 24 hours. Let me back up a bit, last night as I enjoyed sitting with a friend talking and eating some Cold Stone I wondered how long I get to feel the hiccups and kicks from my little girl. Never did I imagine this week to be the "perfect time" God would chose to allow Joanna's heart to beat it's last. Today I got out my trusty dopplar and tried to find her heartbeat, but it was quiet. I don't allow myself to get all worked up, sometimes shes just not in a good position. I tried the cold soda and decided to wait to see if I could feel her kick or move. We enjoyed a wonderful day with some friends - swimming - the boys had a blast!! I checked again when we got home, but couldn't find a heartbeat. I called the doctors office and they said to come on in. My heart racing I dropped off the boys and raced to the doctors office...getting very impatient with all the SLOW drivers! He asked if I had a sixth sense about things. I told him I was not very confident about what I'd find out and as he moved the wand over my belling I saw nothing but black and white...no more movement - where so many weeks before, Joanna had defied the odds and just kept fighting to stay alive. He said, "I'm sorry, but you were right." He said, "Go home spend time with your family, get things settled, and meet me at the hospital at 9pm. I'll have everything lined up and ready to go." So, we'll head in to be induced tonight and say 'Goodbye before our Hello' to Joanna Claire in the morning.

We appreciate your prayers! Don't understand this timing like I said before because my mom is out of state doing some advanced training before school starts, we have been planning a family vacation to Michigan next week, Mike is very busy at work as another co-worker is on vacation. AHHH!!

So what can I change? Nothing but my attitude...so, I'll continue to trust that God is faithful and caring and is not at all looking down from heaven saying, "Ha, let's see how you do now! Figure this one out!" He is hurting with us, this is another reminder to us that this world is not all there is. There is a perfect world he has provided for us, and that is HEAVEN...no pain, no tears, no disease, no death! We are thankful for the assurance of this HOPE. Christ made a way for us to be a part of heaven through His own death on the cross and I can trust that no matter what tragedy or brokenness this world throws at us, we will come out with the faith that God has not abandoned us and left us alone. His Spirit abides with us giving us comfort, strength, peace, and hope for the future. It doesn't mean it doesn't hurt, boy, just the opposite!! My tears will be my constant companion for a while.

We'll try and post updates as soon as we can...

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!