Friday, October 31, 2008
However, prayer warriors, we have a request for next Tuesday.
Next Tuesday is our last growth scan. Growth scan numbers don't mean anything unless they are at least 4 weeks apart and I only have 4 weeks left! So on Tuesday morning, our team of doctors is going to decide if we're going to have a baby that day or just let me go to term (which would be something no one was expecting!)
I'm not sure whether we're praying for her to stay in there or for her to be born. We're anxious to meet her!
But we're praying that God's will be revealed on Tuesday and that the doctors have wisdom and that EMMA WILL BE HEALED!
Whoa, ok, seriously, mom? I get to play with this sword thing?
Respect the Light Saber!
Charlie has had plenty what I call "but seriously..." looks. This is his latest "but seriously, stop taking pictures of me and let me play!" look.
I can't believe Becky didn't have this one on the blog a long time ago. This is what Daddy's do for little dudes. They got to the children's museum on Friday nights and climb their slight little selves into spacious turtle shells. And then they try to get out...... I give Becky much credit for not putting this one up earlier.Back to the little dude. He's already making those very important calls to family. His favorite call is to "A Bean" (Auntie Bean) and "co'in Ruby" (Cousin Ruby) and "Uncle Mahew si cel" (Uncle Matthew and his motorcycle) Yes, we don't call Uncle Matthew specifically, we call the "si cel".
OK, enough for now.
Thursday, October 30, 2008
Yes, folks, that is indeed Josh in the background doing dishes!! Do I have the best husband on the planet or what?
And how did my little boy get to be so big??? Yesterday morning I asked him if he was ready to get up out of his crib and he responded by throwing a leg over the railing and hopping out!!
Ok, so I guess we're ready for a big-boy bed! Or at least a toddler set up. We have a crib we're borrowing that converts into a toddler bed by standing with only 3 rails and then we bought a bed-side rail for a twin bed and put it on the 4th side of the crib. He can climb in and out, but he's not likely to roll out anytime soon.
And the child is SOOOOO excited! Eli was over to play today and Charlie couldn't wait to show him his "BIG BOY BED!"
Let's just say with the excitement of a playdate, neither little boy napped very well today, so when they were awake at 2:00, they had a "blankey and lovey" party in Charlie's room.
Here they are stomping around the room to the music of Charlie's bouncing Tigger:
And this is a variation on their "Home Run" game with blankies. I am not privy to the rules of the "Home Run" game (it involves throwing and running, that's all I've got so far), so I couldn't begin to explain this particular variation, but it looks like fun!
And then I had to run to the restroom quickly (as pregnant women so often need to ... would anyone judge me if i just started wearing diapers? ok, maybe that's going a bit far ... maybe)
Anyway, when I came back into Charlie's room, this was what I saw:
Two little friends playing in Charlie's big boy bed together ... that's normal, right? :) Charlie was so excited to show off that they could climb in and out of his new bed.
And finally, this next video doesn't really capture the cuteness of the moment, so you'll have to imagine they aren't being interrupted by stern looks NOT to bounce on the bed. They are both learning to sing the praise song "Mighty to Save." Eli obviously has more words in hand than Charlie (Charlie basically has "God moves mountains and God is mighty to save"), but they were singing together nonetheless. You'll have to take my word for it that I didn't really get the camera in video mode in time to appropriately capture how sweet this truly was, but it made me really happy. Shouldn't we all be so lucky as to have a friend to hang out somewhere cozy with and spontaneously start singing praise to God without worrying about tune or pitch?
And that's all, folks.
Tuesday, October 28, 2008
The Darling Husband and I haven't been sleeping super well lately, and for my part, the insomnia is part sickness (although I'm wondering if that's a cause or result of lack of sleep) and part worry. I worry about Emma. What's she going to look like? What are the next 6 months going to look like? What are the next 30 years going to look like?
At some point, "Trust in the Lord" starts to sound trite, even though I cringe at the thought of diminishing his power to save. It's hard when you've heard it your whole life to make it sound fresh.
And since I've heard "Cast your Cares upon the Lord" ever since my Psalty records planted those words in my heart as a child, sometimes admitting that you're worried feels like yet another mistake you're making ... and therefore something to worry about. Like I didn't eat my veggies today and I'm disobeying Christ's command to not worry and it's causing me to worry!!!!
For today, anyway, however, God is speaking those words freshly through Scripture.
I'm trying to read the Bible this year with the Useful Breath daily Bible reader schedule. Sorry, Pastor Dave, I know I'm a little behind, but Exodus 13 and 14 REALLY spoke to me today.
Somewhere in between "Let my people go" and the parting of the Red Sea was the fresh evidence I needed that God really was in the business of helping his people (whether they deserved it or not ... whether they prayed right or not ... and whether they really truly thought it was going to happen or not).
I hadn't realized before that God didn't take the Isrealites on exactly the most direct route out of Egypt. Ex 13:17 says "When Pharaoh let the people go, God did not lead them on a road through the Phillistine country, though that was shorter. For God said, 'If they face war, they might change their minds and return to Egypt.' So God led the people around by the desert road toward the Red Sea."
So when Pharaoh's army had the Isrealites trapped up against the sea, I understand why the people were a little miffed: "Have you brought us out to the desert to die? It would have been better to stay in Egypt!"
I have to admit, there are times I relate to the Isrealites in this moment. "You could fix Emma in 2 seconds if you wanted to!"
But God brought them there ON PURPOSE. They didn't understand it at the time, and we don't get to find out what the other option would have been, either. God has brought us down this path because it's the best for our growth and HIS GLORY. He's showing them dependence on Him and He's showing off a little in the process. Have I mentioned how painful the dependence lesson has been for me in the last 3 months? Nothing I can do will change Emma's outcome and the doctors are saying the word "maybe" a little too often for this information junkie's tastes. But it felt good to be reminded that God has us in this place on purpose.
That wasn't the part that made me feel better, though. What helped me actually get 3 hours of worry-free sleep this afternoon (aside from my mom taking Charlie :)) was Moses' response.
"Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Lord will fight for you, you need only to be still."
Yes, I need to pray for Emma and Charlie, but if I fall asleep and forget to pray for more than 2 hours, it's not like God's going to drop the ball and forget about them!
I need to be thoughtful about bringing my petitions before the Lord, but it's not the amount I work on phrasing them correctly that will or won't save Emma.
Not by might nor by power but by HIS SPIRIT will she be saved (that's a verse somewhere in there, i'm sure of it ... Psalty sang it once:)). He will fight for her, I only need to be still.
I think I may actually sleep tonight, but if you're still awake and feel led to pray for us for something, "be still and know that He is God" would be a good one for us tonight.
Mama, however, is sick and exhausted and going back to bed. Praise God for family to watch the monster this afternoon so I can try to get over this awful cold!
Friday, October 24, 2008
It's all we can hope for right now! Praise God she's ok in there.
Wednesday, October 22, 2008
This is one of the stories in his Bible that we read every day:
Jesus was a teacher who
taught what God wants us to do.
Love your neighbor, shine your light
Hate what's wrong and do what's right.
Be kind and helpful, quick to share
Talk to God in simple prayer.
seriously, we haven't talked about the TOGA thing since the last time we made videos! Where does he come up with this stuff?!
[and yes, of course Jesus was more than a teacher and yes of course we talk about His miracles and pray to Jesus every night ... just wanted to clarify:)]
and i promise he's not picking his nose ... he wouldn't do that ... ever ... oh, who am i kidding
Thank God for Charlie. It's pretty hard to be depressed with this little man around.
Thanks for all your comments and prayers, we'll keep you posted!
Tuesday, October 21, 2008
Now, for the other appointment we had today.
We had our consultation with a neonatologist (neonatal = after the baby is born). He put some things into perspective for us, helping us understand what all of this that we have been told about Emma means for the first few months of her life.
First, his main concern was about her heart, not the hernia. We didn't really understand until today what the findings regarding the heart might mean, but here's what he spelled out for us:
Her aorta is narrow, thinner than her pulminary artery. When she's in Mama, this is not a problem. Babies in utero are obviously not breathing and are therefore not getting oxygen from the lungs for the rest of the body, so there is a valve (I think? I hope there aren't any doctors reading this site, I'm sure I'm getting some of this wrong, but this is the basic idea) a valve that circumvents that part of the process while the heart is pumping blood to Emma's body. When she's born and the cord is cut, that valve closes and the pulminary artery kicks in. For Emma, this could be dangerous. The doctor said it would be like hooking up a garden hose to a fire truck, that the aorta cannot handle the amount of blood the pulminary artery would be sending it's way. So they are going to give Emma some medicine to keep that valve working until they can assess her heart situation. Unless the aorta fixes itself or is less thin than it looks now, they will have to do "open-chest" (as opposed to open-heart) surgery within the first couple of days of her little life.
The hole in her heart is still a question as to whether or not that's a problem. At this point, if it requires surgery, they are thinking that won't happen until she's closer to 3 months old. We will be sent home from the hospital (when all these other issues clear up) with instructions for how to recognize heart failure and we'll assess the heart situation from there. If this one does require surgery, it will be open-heart surgery.
But back to the first 24 hours of life ...
Remember way back when we were worried about the jaw bone? We didn't understand the implications that had for all this other stuff. If Emma needs to have any tubes in her mouth (ventilator or the like), which seems likely with her stomach being in her chest, there is a possibility that the small jaw bone could keep them from being able to fit things like that in her mouth. Or, if the micrognathia (recessed chin) is severe, it could inhibit breathing in and of itself. There are two options if this is the case. One, they could break her jaw and re-set it, which may have to happen later in life anyway. Or two, if this presents an emergency situation and we need to stabilize Emma, they could do the hole in the throat thing we all saw in those videos meant to scare you away from smoking. Neither sounds like much fun to me.
For the Diaphragmatic Hernia, we just have to wait and see. Dr Payne is actually not convinced that it is indeed a DH. He almost seemed to think that Emma's version of this potentially serious complication was too good to be true. The fact that it's only the stomach and that there is no evidence of pressure on the heart and lungs is FABULOUS news, but it's leading Dr Payne to believe that maybe this is actually a defect in the esophogus (any of you who know how to spell words like that should be writing this instead of me ... but then again, if you know how to spell that, you probably have given up reading at this point out of frustration with my incredibly lame attempts to explain medical concepts I barely understand). Either way, it's something that needs to be corrected before she can eat, so that's another surgery we'll be looking at within the first few days of her life. But then again, very little babies like Emma sometimes don't have the strength to eat until they are bigger, so we're probably looking at IV feeding for awhile anyway.
Which brings us to Emma's size. Dr Payne feels that a baby who is THIS small (he emphasized that she really is very small for her age) with this many potential problems is not likely to have a smooth go of life even after she leaves the NICU. He said babies this small tend to stay smaller than normal and who knows what kind of syndrome that might indicate at this point. He described her future development (cognitive and physical) as "murky." So he wants a geneticist to meet Emma when she's born to determine what else we should be looking for in the future.
Hence, the title of this post.
In the short-term, anyway, Dr Payne was guessing that if we make it to 37 weeks, we should expect at least a 30 day NICU stay. We toured the NICU today and saw where Emma will spend her first month. It's depressing to think she'll be there and not home, but it's amazing the things they can do for little ones. I know she'll be in good hands.
But we're kind of sad tonight. Thank you for your prayers.
God give us strength, preferably at the moment in the form of SLEEP.
Sunday, October 19, 2008
I was praying for Emma and saying all those things you feel like you're supposed to say: Your will be done, You are able to heal her if that's your will, but if not give us strength, give Josh peace when he needs to be there for Emma after her birth, help Charlie deal with all this is in his way, etc.
Now, those are all wonderful prayers and I appreciate those of you who have prayed them with me, but I realized something was missing and the Holy Spirit hit me over the head with it this weekend.
I realized that I had yet to say these words: "Please heal Emma."
That sounds so dumb, typing it now. Maybe you all are 'better pray-ers' than I am in this area (whatever that means), but hear me out.
I had asked God to give the doctors wisdom. I had asked God to use the scan to show us what we needed to know to treat Emma. I had acknowledged his power to heal and affirmed in prayer that he could if he wanted to and it would be nice if he did ("but I know You don't really do that all that often anymore..." not that I'd really said that to God, but you know what I mean).
But to actually ask God to reverse what's already in play felt a little too bold and possibly even arrogant. Emma is being knit together in her mother's womb, am I to watch over God's shoulder and tell him that something is going wrong?
I mean, really, we serve a God to asks us to boldly approach his throne and bring our prayers and petitions to Him. I'm scared of that, if I'm truly honest! Am I going to insult God by asking Him to change what could possibly be His will being played out?
And it's a little vulnerable to ask for something so big and know that the answer might be 'no.'
But on the drive up to Duluth, I prayed a prayer that I honestly hadn't prayed yet: Please heal Emma. Fix the hole in her heart. Move her stomach back to where it's supposed to be. Close the hole in her diaphragm. Grow another vessel in her cord. Grow her to the size she's supposed to be. Make all those facial markers go away. And put enough amniotic fluid in there.
Please. (look up with wide eyes at Heavenly Father like the child I feel like in that moment)
That was a huge leap for me! It felt truly powerless and childish. It felt like whatever the opposite of "Christian-ese" is. But it was honest and GOOD.
And then, well ... Have you ever felt pushed along in your prayer by the Holy Spirit? I felt him smiling and nodding and agreeing with me in prayer. It was wonderful.
So now I have a proclaimation to make: it is truly and actually within the realm of possibility in REAL reality that our next ultrasound technician will furrow her brow, look confused, and say, "there's absolutely nothing wrong with this baby."
And I'll be darned if that won't be the biggest praise and worship and GLORY TO GOD this family has ever heard!
(and yeah, I know, if that's not His plan, glory to God anyway and His will be done and all that ... but let's stop the Christian-ese here)
So I'm praying for healing in a way I never have before. Does that challenge you to do the same in your prayers for your life? If not, don't tell me :) Let me think that this is a revelation and not God smacking me on the side of the head and saying "DUH!"
So now we have two appointments a week just like before, but one is a simple BPP with a nurse and the other is a BPP plus full doppler scan (to check blood flow) with a perinatologist. Our next appointment is Tuesday.
We're feeling like we're in good hands, medically and spiritually. Thank you so much for all your prayers!
Wednesday, October 15, 2008
MRI confirmed the DH. Emma's stomach is up in her chest, but Praise God that it's ONLY her stomach and that it's behind the lungs and not putting pressure on the lungs or heart and so far it's a WORKING stomach! These are all very exciting things in my life right now! :)
Emma's lungs look symmetrical, which has the doctors optimistic about normal lung tissue developing and a minimal amount of respiratory distress occuring.
So Praise God that this is not nearly as bad as it could be!
We're asking for prayers about the first couple weeks of her life at this point. We spoke with a "nurse care coordinator" yesterday who told us to expect at least a 3 week long hospital stay for little Emma. We're going to tour the NICU and meet our neonatologist sometime in the coming weeks. We know that God will and is giving us the strength to get through this, but it seems a little overwhelming at the moment.
Still, I have faith that it's going to be ok.
In case you're curious, scoring is based on:
2 pts for movement (she has to have 3 substantial movements)
2 pts for muscle tone (one of the movements has to be more than just a jerk - she waved this time)
2 pts for level of amniotic fluid
2 pts for "practice breathing" (nothing to do with her lungs, it's just the diaphragm practicing moving like breathing)
2 pts for the non-stress test (does her heart rate accelerate when she kicks)
Go, Emma! Hang in there, little girl!
Monday, October 13, 2008
(no, we don't have the results back yet)
To confirm the findings from the last ultrasound, our doctor ordered an MRI to be performed on Friday. I was nervous about the results of the test, but it didn't really occurred to me to be nervous for the test.
So I went into the room ready to be bored and uncomfortable for at least 30 minutes, but that's about it. We've all seen the 'House' episodes, it's just a big tube with a magnet in it, right? I had no prison tatoos that were going to come shooting out of my skin! The nurses strapped camera plates across my belly (therefore strapping me down to the machine), gave me headphones to listen to breathing instructions they would need to give me and explained the procedure and rolled me into the machine.
Then, I panicked! I mean, sweat dripping, heart racing PANIC! I am not a claustrophobic person, but for some reason looking up at the ceiling of the machine and feeling so inclosed just FREAKED me out. I pushed the panic button they gave me and yelled "I need to get out!" They hadn't even started the testing yet; I don't even think the nurses had left the room.
So I got out and sat up and cried. I said, "I don't know what's wrong with me, but I don't think I can do this!"
They sort of exchanged a look and told me to take a few deep breaths. I asked them to just give me a minute and I sat and prayed. I asked God to help me. I told Him I knew I needed to do this test and asked him to send His spirit to calm me down. The nurse asked me if I thought I was ready to try again and I said I thought I was. She suggested putting a washcloth across my eyes so I wouldn't see the machine and asked me if there was a radio station in the headphones I would like to listen to. I asked her to turn the station to KTIS (Christian radio I listen to all the time) and we tried again.
This time, God showed up so completely I just felt like I needed to share!
I felt the presense of the Holy Spirit in a way I've only felt maybe a couple of times before in my life. I lay in the machine and listened to the songs and focused on the words. Selah's "You Raise Me Up" was the first song I heard and as I made the words my prayer I felt so encircled by God's love that I completely forgot about the test and the machine. I experienced joy and worship and ... I can't really describe it, but I pray that if you know the Lord you know what I am talking about ... it's that thing that you only really get a couple of times in your walk with the Lord. It was a blessed time, and I came out of the test smiling.
The nurses probably thought I was crazy when I asked them if they were church-going people and thanked them for letting me listen to KTIS. :)
So anyway, here's how God has used that experience:
I have felt overwhelmed in the last couple of days, thinking about what life might look like after Emma is born. Last night, Josh and I were talking and I started to cry in absolute despair. I said, "I don't think I can do this!" (in the moment, I missed the irony ... but don't worry, I got there eventually)
I felt God's presense again last night, reminding me of the blessing I experienced by allowing myself to go through the test. God reminded me that I didn't want to do it, that it wasn't necessarily fun and I'm super excited to do it again or anything, but that HE SHOWED UP. Like the Third Day song says, "I must go through the valley to stand upon the mountain of God." God will be there with blessings in His hand WHATEVER the outcome with Emma. He never said life would be easy, but He said He'd be with us, and sometimes that sounds trite, but I think I had forgotten the joy and strength and peace and love that He brings when you really focus on allowing Him to envelope you in His presense.
I praise God for this experience; I'm drawing strength from it and I hope you do, too.
Saturday, October 11, 2008
This has been my mantra for the past several days. I just run these phrases over and over in my head, with a possible soundtrack in the background that includes the song "Mighty to Save." :)
So not to over-spiritualize my days with my son, but SERIOUS joy flows out of that kid!! God has given us such an amazing gift in our little boy, and Charlie reminds me to be joyful ... which I must admit wouldn't be my first inclination some days recently.
So here's some joy to pass along:
Grampa, this one's for you - Charlie's ABC baseball book has a page that says "P is for Pitcher up on the mound." Charlie takes that very seriously ...
Well, the leg up in the air *is* in the picture ... that must be how you throw!!
And Nana, this one's for you. For the rest of you, I take no credit for teaching him this. It was my mother. You'll have to ask her. She *was* a sorority girl, after all!
We went over to play with Eli and Henry this week and the boys had a dance party ... Charlie didn't know the "She'll be coming round the mountain" song that the other boys were singing at the time, so he inserted his own words: "Toga! Toga! Toga!" Thank you, Mom, for that moment of embarrassment. Luckily, Tam is a fellow "mother of sons" and took it in stride (with quite a bit of laughter). Later, when they had lunch, her boys were singing "Mighty to Save" along with the radio (which, by the way, if you haven't seen on her blog yet, is very cute. click here) and Charlie belted out "GORY! He REIGNS!" Well, yeah, that's the idea, dude :) He'll get there eventually, but for now he's pretty darn special and keeps me smiling.
Thank you all for your prayers for Emma. We find out the results of the MRI next week and starting Tuesday we have twice-a-week biophysical profile tests. I'll post results when I know them.
Tuesday, October 7, 2008
Emma's heart is slightly assymetrical, but pumping well. Her aorta is slightly smaller than her pulminary artery, which could require surgery after she's born, or it could correct itself once she starts using her lungs after birth.
There is also a small hole in her heart, which could also require surgery after she's born or it could correct itself. Doppler scans of blood flow look good, however, which was reassuring.
And of course the little drama queen threw another curve ball at us today. She has a "cystic formation" in her chest cavity that wasn't there in previous scans. Her stomach has also mysteriously vanished (it was right where it was supposed to be at 20 weeks). This is leading the perinatal doc to suspect that she has a diaphragmatic hernia, which means she has a hole in her diaphragm that abdominal organs can push up through. The guess right now is that the cyst in her chest is her stomach that has pushed up through her diaphragm; we have an MRI on Friday to confirm this.
This new symptom obviously has us very concerned. If this is indeed a hernia, it can be corrected by surgery after she's born, but the idea of a little one having surgery that early in life scares me a lot.
Her growth was not stellar this check, either. Emma is back below the 10th percentile, but her fluid levels and doppler results have reassured the docs that she's ok in Mama for a little while longer. They'd like to keep her in there as long as possible to have her be as strong as she can be for her upcoming surgery(s).
All I know is that God's unfailing love surrounds those who trust in Him. Please pray that Josh and I will continue to be filled with a sense of peace and trust in the Great Physician. We know that Emma's little life is in God's hands and we'll wait to see what He's got planned!