Memorial Day!

We enjoyed a weekend away from the norm and visited Mike's family in Michigan. It was nice to spend time with family.

We went to visit Mike's dad's grave. Our boys had never been there but had been asking what it looked like, so we loaded up in the van and had a nice time remembering and sharing with our boys. He fought in Korea, and was honored by the Boy Scouts with a flag by his grave.

We headed to the parade at noon. The boys huddled under a blanket with their cousins. It was so windy, but they still had a great time (and managed to grab a few tootsie rolls :)).
Then we headed back to grandma's for a cookout and a serious game of wiffle ball. It was so fun...to watch :)

Please keep our niece Rachel in your prayers. On Tuesday she began the bone marrow transplant process. She has been fighting leukemia for about a year now (she is 13 years old). Tue began 5 days of full body radiation, then comes a big dose of chemo, then the transfusion of bone marrow from her younger sister. Then at least 21 days in isolation while they wait for the grafting to take. It will not be a fun or easy road! Pray for no side-effects, and that her body will not reject the donor marrow.

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."

Weekend fun!

Grandma came this way for a few days when the doc told us our girl would not have a heartbeat by Friday...well, when her heart WAS still beating we decided to take advantage of our time together. The boys had fun with paint...and we had fun with a little paint ourselves. We 3 girls went for a relaxing pedicure :)

The boys painted pictures... We enjoyed Trent's soccer...

But, Drew's game was rained out...

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. "

Reflecting

As I was driving in the car this weekend, I was challenged by my kids' music. See, I listened to these same songs -well tapes- when I was little and jumped at the chance to buy them on sale in the Cedarville University bookstore a couple years ago. The truths I learned from Steve Green, as a kid, I'm excited to pass on to my kids. But this weekend I heard them in a new light as I continue to filter everything through this new trial we face. I just wanted to share something little that has encouraged my heart! These songs - straight from Scripture - I want my boys to learn, so they are "hidden in their heart" and can lean on the TRUTH when they face struggles of their own.

I must admit I don't always FEEL like God is there or knows what He's really doing. BUT, the Word I have hidden in my heart challenges these thoughts/lies. I'm so thankful God has preserved the Bible all these years, and because I believe every word is true, I KNOW that He truly IS in control, He's knit this little girl in my womb, His ways are perfect, and He will stick closer to me than a brother! I also had to smile when I listened to "A Joyful Heart is Good Medicine" from Proverbs 17:22.

***Update*** I tried to figure out how to attach the songs, but I can't. Oh well. You can listen to all of the songs in full length on Rhapsody.com. Click here to go there.

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.

Great day...

I picked up some real fish food (we usually just use bread) at Walmart the other day and the boys were so excited that it looked like the food we get at the zoo to feed the catfish. We spent time out in the sun, the boys skipped rocks on the pond, and played on the swing set.

Drew was showing me another rock he found for his "coewection." The pile in my garage, however, is beginning to get rather large, hummm...

Trent was rollin' around in the grass. We are loving this weather!