keep praying, keep praising!

Harper: Day 2 (6/14)

sweet girl was pretty heavily sedated after surgery and all night. however, they started weaning and allowing her to wake up this morning. guess what? when she woke up enough, her breathing tube was removed! that's awesome! she is still on a nasal cannula to blow a little air in and help keep things stimulated/inflated, but that's a GREAT BIG step!

Harper is also currently in heart block...that means her heart hasn't quite woken up from the shock of surgery (normal and expected), so she has the help of a temporary pacemaker right now. the doctors will give her heart up to a week to get its act together before they decide to place a permanent pacemaker that she will have for the rest of her life. while mommy and daddy don't necessarily WANT that, if that's the only thing they have to deal with, they'll take it!

Harper has also had some of her IVs removed, medications discontinued, and the girl is EATING, people! EATING, a day after heart surgery! and according to her daddy, she is breathing AND eating much better than before her surgery...this is fantastic news! right now, she's eating an ounce every three hours, and they will continue to advance that slowly until she is on "full feeds"...meaning she gets all of her nutrition from mama's milk and the IV fluids can be turned off completely.

Harper: Day 3 (6/15)

i didn't hear much today, except that Miss Harper's heart has kicked it into high gear and is working on its own! hallelujah, no pacemaker for this girl!

please continue praying for a good, speedy recovery. Harper will have another echocardiogram (heart sonogram) over the next few days to make sure the patches that were placed are not leaking at all (or maybe leaking just a tiny bit). so pray that Dr. Harrell's stitches are holding better than your grandma's quilt stitches ever thought about holding together!

here i raise my ebenezer...

i love this verse from the old hymn...it comes from a verse in 1 Samuel. The Israelites were being attacked by the Philistines, and God threw the Philistines into a tizzy, and they all ran in every direction BUT toward the Israelites. The Israelites chased after them and slaughtered them. In response to the victory, Samuel set up a sort of altar to praise God and mark the occasion...he called the stone "Ebenezer", which means "thus far has the Lord helped us."

in similar fashion, we are raising our Ebenezer stone in victory today...she made it! praise God, Miss Harper made it through surgery! see mama Amy's blog here. i got text updates throughout the day. Harper was taken back to the OR around 7:30 yesterday morning, and her day proceeded as follows:

1036: Harper went on the heart/lung machine about 10. Her heart will be stopped for about an hour. Surgery is going well so far.

1215: The repair was a little more complicated than they expected. There was another hole that had to be patched as well, but both have been patched and now they'll warm her up and restart her heart. (my aside...the heart ORs are kept very cold...i'm talking like 40 or 50 degrees fahrenheit. Aids with decrease in infection and body metabolism rates.)

I asked when I woke up this afternoon if sweet girl was settled in the PICU yet:

1441: I think so. Dr. Harrell said it was one of the most difficult repairs he's ever done. Her heart was much more deformed that they could see on the echo. So it took a lot longer than expected.

I also asked if she was still considered "fixed", and i got a big smile: Yes! All fixed :)

1755: She's doing well...considering. (i tried to upload a picture here, but blogger shut me down both times...)

1816: Sorry for such a long delay. Harper is in ICU and doing well. She may go off the ventilator as early as tonight. We are so relieved and thankful that she has done so well!

I asked how mommy and daddy are doing, and Amy said they are well...mostly just relieved, thankful, and at peace.

Please keep praying for Miss Harper. The second and third days after surgery are usually harder, as your body starts to wake up more and the AK-47 caliber of pain meds from surgery start to wear off. Harper will be kept on continuous pain and sedation drips for now to help, and she will also have medicine ordered for breakthrough pain. Continue to pray for healing to her body and that she stays free of infection. Continue to pray for guidance for the doctors, nurses, and respiratory therapists caring for her. Pray for true rest for Amy and Dustin, and that they would continually be renewed and strengthened by the Father.

will post more later...continue to pray that His name is glorified in every way possible!

hit yo' knees for baby Harper!

ok friends...i am a lame, awful poster. however...that is a topic for a different post. i have something much more important to discuss.

this sweet girl right here...
is having her surgery TODAY! as i type, her mommy and daddy are driving toward Lubbock. they have to arrive by 6:00 AM, and surgery will begin sometime between 7:00 and 7:30.

here's what's going to happen: most of us have two ventricles in the lower half of our heart; one to pump deoxygenated blood to the lungs, and one to pump oxygenated blood that has returned from the lungs out to the body. these two are divided by a piece of muscle called a septum...same concept as that thing that divides your two nostrils. in Harper's case, she has a large VSD...ventricular septal defect. basically means that where that septum should be...there's a big ol' hole. so Miss Harper's deoxygenated blood is mixing with oxygenated blood. this is a problem, because the blood being pumped to her body is only semi-oxygenated. that makes it hard to breathe, hard to have energy, hard to eat...basically, everything is harder for little miss. so what the doctors are going to do is take a piece of gore-tex patch and sew in in where that septum should be. as long as all goes well...and we have faith that it will!...this will be the only surgery Harper will ever have to have and she will live a normal life from now on.

what does this mean for her? if you will look again at the picture above, you will notice an orange and white tube dangling from Miss Harper's left nostril. that is a feeding tube. remember how it's hard for her to have the energy to eat? since Harper came home from the hospital at 3-4 weeks of age (and even in the hospital), that tube has been her worst best friend. Harper gets to practice bottle-feeding a couple times a day just so she remembers how, but the vast majority of her nutrition is delivered via a feeding pump through that tube and directly into her stomach. that way, she gets all of her calories and can concentrate just on gaining weight, not having to work for it. this way, she's been able to get bigger more quickly in order to optimize her chances for surgery. since she came home from the hospital, this has been Harper's world:


the bag on the pole holds her milk, which then runs through her tubing. she gets fed every three hours, around the clock. you will also notice a white cord hanging off the front of her swing...that hooks to a monitor that measures the level of oxygen in Harper's blood. if it gets below a certain level, the monitor alarms loud enough to wake the dead for 20 miles...her mama will attest to this! as time has worn on, her monitors have gone off more often, and her color has not been quite as pink. she's also been working noticeably harder to breathe. between these things and her weekly appointments with the cardiologist, we have arrived at today.

Amy and Dustin have incredible faith...i watched it play out two and a half years ago with their twin boys. please pray for them...pray God will encourage and strengthen them today, and that they will have the Peace that passes all understanding. pray that the Perfect Love they cling to will cast out all of their fears.

and the team...pray for Dr. Harrell...he's the surgeon who will be operating on Miss Harper. pray for steady hands and wisdom. pray for the anesthesiologist who will be closely monitoring Harper's pain, sedation, and oxygenation levels during surgery. pray for the perfusionist who will be running the heart/lung machine that will do all of Harper's blood pumping and oxygenation during the most critical part of surgery...in order for the heart to be still enough to make the microscopic stitches needed, her heart will actually be stopped for a while. pray for the circulating nurses and scrub techs, that they will be able to anticipate every need.

after surgery, Miss Harper will be wheeled back to the pediatric intensive care unit. i know those nurses, and i know they are some of the best. they will be Harper's advocates throughout their stay. pray that their eyes are open and anticipating anything that may be cropping up with Miss Harper after surgery. and most of all...pray for Miss Harper. pray that her little 13 week old self knows the love and comfort of the Father through all of this. pray that her pain is well controlled and that healing comes quickly. pray that she doesn't develop an oral aversion from all of the tubes in her mouth (this will make it more difficult to relearn bottle feeding). pray that no post-op infections crop up and increase her hospital time.

it's gonna be a big day...pray that the Father is known above all.

more updates later.

good, awesome, enlightening stuff.

disclaimer: this is NOT mine. I am not this theologically brilliant. I transcribed the following word for word from a YouTube video. mad props to the true author, Tim Keller (Redeemer.com).

I hope this encourages you as much as it did me.

What is the Bible basically about?
Message by Tim Keller, www.redeemer.com

What is the Bible basically about?

"And beginning with Moses and all the prophets, he interpreted to them in all the scriptures the things concerning himself." -Luke 24:27

What is the Bible really about? Is the Bible basically about me and what I must do, or is it basically about Jesus and what He has done?

When you read in Luke and Acts about how Jesus in those 40 days got His disciples together, 40 days before He ascended after He was raised, what was He doing? Basically he was saying, "Everything in the old testament is about Me." He says, "The reason you didn't understand what I was about was that you didn't realize that everything in the prophets and the psalms and the law was pointing to Me."

Do you believe the Bible is basically about you, or basically about Him? Is David and Goliath basically about you and how you can be like David and Goliath, or basically about Him, the One who really took on the great and the only giants that can really kill us? And so His victories are imputed to us.

Who is David and Goliath really about? That's the fundamental question.

And when that happens, you start to read the Bible anew, you know?

Jesus is the true and better Adam, who passed the test in the garden...His garden, a much tougher garden. And whose obedience is imputed to us.

Jesus is the true and better Abel, who though innocently slain has blood that cries out; not for our condemnation but for our acquittal.

Jesus is the true and better Abraham, who answered the call of God to leave all of the comfortable and familiar and go into the void, not knowing whither he went.

Jesus is the true and better Isaac, who was not just offered up by his father on the mount but was truly sacrificed for us all. While God said to Abraham, "Now I know you love me, because you did not withhold your son, your only son whom you love from me," now we at the foot of the cross can say to God, "Now we know that you love me, because you did not withhold YOUR son, your only son, whom you love for me."

Jesus is the true and better Jacob, who wrestled and took the blow of justice we deserved so we, like Jacob, only received the wounds of grace that wake us up and discipline us.

Jesus is the true and better Joseph, who is at the right hand of the King, and forgives those who betrayed and sold him and uses his power to save us.

Jesus is the true and better Moses, who stands in the gap between the people and the Lord and who mediates the new covenant.

Jesus is the true and better Rock of Moses, whose strike with the rod of God's justice now gives us water in the desert.

Jesus is the true and better Job; He's the truly innocent sufferer who then intercedes for and saves his friends.

Jesus is the true and better David, whose victory becomes his peoples' victory though they never lifted a stone to accomplish it themselves.

Jesus is the true and better Esther, who didn't just risk losing an earthly palace but lost the ultimate heavenly one; who didn't just risk His life but gave His life; who didn't just say "If I perish, I perish," but says, "When I perish, I'll perish for them, to save my people."

Jesus is the true and better Jonah, who was cast out in the storm so we could be brought in.

He's the real Passover Lamb. He's the true Temple, the true Prophet, the true Priest, the true King, the true Sacrifice, the true Light, the true Lamb, the true Bread...

The Bible's not about you! It is primarily about Jesus.

so close...

so, I have been out of town for a week...and I'm SO glad to be back home! here's the latest on Miss Harper Lynn... we have completely mature lungs, people!! that's fantastic! Harper is also very close to five pounds. Pray with me that five pounds is an under-estimate...and that she continues to gain lots of good weight over the next several days...weight is VERY important. When Harper is born, she will be on an IV drip of a medication that will help keep an important extra vessel in her heart open (that will later be closed...yes, the NICU is full of paradoxes). However, we generally don't feed babies who are on this medication. So, beside being like every other baby who loses approximately 10%(ish) of their body weight the first week of life, we won't be putting anything in to help her regain. In addition, sweet girl will lose weight after surgery because her body's metabolic demands will be extremely high as a part of the healing process from surgery. We also don't feed babies immediately after major surgery...see, babies are sort of like men. they have a one track mind. In Harper's case, we want her body to focus on oxygenating and making that heart work. If we feed her, that steals blood and energy away from the healing process, and her body is concentrating on too many things at once. However; no foods means no weight gain (beside water weight, which isn't good weight gain and will go away anyway), In short: pray for poundage!! At this point, Miss Harper's birthday is scheduled for April 5th. The c-section is scheduled for 7:30 am, so sometime around 8:00 am, sweet Harper will be making her grand entrance, to quite the audience: pray for Dr. Killeen (Amy's regular OB) and the assisting physician (another OB). they will be the ones performing the c-section and taking care of Amy. also pray for the anesthesiologist...for good spinal anesthesia and pain control for Amy, as well as no nausea. After anesthesia is deemed effective, daddy Dustin will be escorted back to the OR. Pray for courage for him, and that he and Amy will be filled with the Peace that passes all understanding. I'm not sure whether Dr. Robinson (the cardiologist) will be present at the delivery...generally he shows up in the NICU and performs the echocardiogram after baby comes back from OR. But pray for clear images and good reports from him. This echo will give us the clearest picture of Harper's heart and blood flow thus far, and will go a long way in determining what surgeries and/or procedures she will have in the first week or so of life, as well as the overall severity of the defect. Aaaaand we can't forget the NICU team. :) There will be two nurses, possibly a respiratory therapist, and one of two neonatologists (Dr. Contreras or Dr. Carroll) present to take care of Miss Harper. She may require immediate intubation for poor respiratory effort. However, since her lungs are mature, we are hoping for the other scenario: all you mommas...do you remember the first time you heard your brand new baby cry? Do you remember the first time you met the sweet thing you'd been waiting to meet for all those months (or years, Jennifer)? Do you remember counting their toes and touching their sweet, still-covered-with-vernix faces? Pray that for Amy and Dustin. Pray they will be able to have a moment with sweet girl before she is whisked off to the NICU. Pray they will get to hear her "hello world, why is it so COLD out here???" holler. Pray they will get to have a first few pictures with this precious life. And pray for Miss Harper. Being a brand new baby in the NICU is not the funnest experience. Bright lights, lots of people and noise, needle pokes, things being stuck to her chest, being restrained to keep her from "helping" during central line placement...lots of new things. Pray for God's comport and peace to Harper during her first few hours of life. Lastly, but definitely not leastly...please pray for Harper's big brothers Eli and Landon. They have been hearing about this new baby sister for a while, and won't understand why they don't get to meet her right away. Pray that God will give them patience and understanding in their two year old minds and hearts, and extra measures of love while mommy and daddy are away. Pray also for the fabulous grandmas and other friends and family members who will be with the boys in the coming days, that they will be able to comfort Eli and Landon and keep them reassured. That's all I know for now...will keep y'all posted. Keep praying it up!

big girl!

quick update: I heard from Amy and her last appointment showed that Miss Harper is getting positively chunkified...she went from 3# 11 oz on March 11th to 4# 8 oz today (the 22nd). that's almost a pound in a week and a half! she now weighs more than either of her big brothers did when they were born. please don't stop praying for growth and the optimal situation for little miss when she's born. go, big girl, go!

46XX

the verdict is in! along with other tests that were run on Miss Harper this weekend, chromosomal tests were done. many times, if a baby isn't growing and everything else checks out, it means some type of chromosomal defect is involved. the full report will not be in until next week, but the preliminary results show a chromosomally normal female: 46XX. all sets of chromosomes are there and normal, including the sex chromosomes (the XX). that's FANTASTIC news...praise God! Thank you for praying!

As a result of normal chromosomes, the doctors think Harper's lack of growth is due to (in Amy's words) "a lousy placenta." Since Harper's not growing, she's under some stress (we could liken it to working hard because you have a pressing deadline at your job, but you're still functioning well) but all of the testing they've done shows that she's not in DIStress (which could be compared to you having a meltdown and being locked up in the psych ward, getting shots of psychotropic drugs in your rear as a result of previously mentioned project). So, Amy was allowed to go home (90 miles from the hospital) today, but her doctors are wanting to keep a very close watch on Miss Harper and want Amy to take it very easy to keep Harper's next few weeks as stress free as possible for optimal growth. She will be back in Lubbock for a non-stress test and sonogram on Saturday.

So...how to pray?? At this point, please continue to pray for Miss Harper to get bigger and to have a few more weeks "on the inside"...they are shooting for end of March/beginning of April-pray for April! Also, we want her heart's tricuspid valve (the valve that controls blood flow from the right atrium to the right ventricle) to get bigger. Please also pray that her VSD (hole between the ventricles that allows blood mixing) doesn't get bigger...we want it to be big enough to allow blood into the right ventricle but not so big that it can't be closed in order to create a two-chamber heart.

Please also continue to pray for Amy and Dustin; that God is preparing their hearts for this precious little heart that is coming. Pray for strength and courage for the days to come, and that they will lean wholly on Jesus in everything.